Hi everyone!
Well, I am still waiting to hear if I need radiotherapy! The MDT meeting a few weeks ago decided that I should be referred to the Royal Marsden in Sutton to discuss my options with the gynae clinical oncologist. Apparently this doesn't mean that I definitely need radiotherapy, but I guess if they are going to the trouble of referring me, then on balance I'm more likely to need it than not! Anyway, I am still awaiting this appointment, so life is a bit on hold in case I need to have radiotherapy, which could mean treatment every weekday for 5 weeks down in Sutton - fun, fun, fun!
I'm the meantime ...
Last Monday I went to see the gynae surgeon again, to have a review of my HRT and get the results of my bone density scan that I had last week. This scan was just really there to get a base line for future scans as they check me for any signs of osteoporosis (something that I am at risk of having gone through the menopause early). Well, the scan results came back fine and I'm next due to have one in a couple of years. My hormone levels are within the normal range as well, so I'm sticking with the HRT I'm currently on for now. With these two pices of news, the surgeon discharged me from the gynae service and I'm now in the hands of my GP for all things HRT related. I am now trying to work my way through the pile of books that are recommended reading from the Daisy Network (a charity that works with women who have gone through early menopause for various reasons). Amazon always does well out of me!
With my sick note (or whatever it's called these days) expiring last Wednesday, Thursday marked a return to work for me! This was exciting and I was glad to get back to the office and catch up with some of my friends. I must admit though, I've kind of got used to having 9 months off at a time, so going back after just 7 weeks felt a bit odd. Of course, I may be having a radiotherapy holiday again yet, but I think working again is a good step! For the time being, I am just working part time whilst I continue to return to full strength, so I can't be totally to blame again for the weather yet! (You will notice that the weather is showing signs of improvement though, now I'm back ;-))
Last Sunday I took part in the Race for Life at Crystal Palace Park. It was a great atmosphere as ever and I had a lovely walk with Stacey, who's mum Jill is a lovely friend of mine. We had a lovely natter all the way around the 5km course, which we completed in the sunshine and showers in 1 hour, 10 minutes! Yay! Thank you so, so much to everyone who sponsored me! The current tally stands at £665! If anyone still wants to make a donation, here's my page:
Race for Life sponsor page
Today, I've been a bit of an armchair sports fan and may have given myself an injury by straining my thumb using the remote control! ;-) I've managed to clock up watching the 2nd Lions rugby test, the British F1 Grand Prix qualifying, Laura Robson's tennis match at Wimbledon, the final few laps of the Moto GP, the IPC athletics Grand Prix in Birmingham and the highlights of the Tour de France! I think I now have square eyes! It's certainly been a tense day to be a British sports fan!! It's probably a good thing that I am back at work now to get me away from the tele! ;-) Just to reassure you, in amongst it all I did go for a bit of a walk in the sunshine to top up my vitamin D levels and restock the fridge from sainsburys! All in all a 'busy' day!
One last thing for today, can I just say a massive thank you to all the British armed forces, past and present, on Armed Forces Day 2013.
XXX
Saturday, 29 June 2013
Thursday, 6 June 2013
The sun has got his hat on ...
.... Hip hip hip hooray!
Yes, I seem to have some lovely weather for my continuing recovery from surgery. This makes me very happy and I am making the most of it by getting out for a walk each day :-)
In other news, apparently my name wasn't on the list for discussion at the Gynae MDT meeting on Monday, so as yet there is no decision on radiotherapy yet. Apparently I'm on the list for next Monday's meeting. Oh how I love to wait!
Xxx
Saturday, 1 June 2013
Something suspicious that glows
Over the last few months I have been again been back under the microscope as the clever peeps look for some way to explain why my cancer markers were rising. Back in January, my routine 3 monthly checkup showed that the little buggers had risen from the all time low of 8 at the end of chemo last October. Anyway, this prompted a CT scan and colonoscopy. The latter showed up nothing worrying, just a couple of small polyps that were removed. The CT scan however, picked up 'something' roughly in the area of my ovary - possibly a cyst. To check this, I was referred to have an ultrasound. This was done and nothing was found - if there was a cyst, it had apparently burst, as these things do. This all took me to March. The day after my birthday I got the news that the cancer markers were still going up, so it was decided that a PET scan would be a good idea, to see if there were any areas that picked up the radioactive glucose more than it should.
I had a bit of a shock when it came to finding out that there was something not right with the scan results. I was due to get them from my oncologist a couple of weeks after the scan. On the Monday before this I got a letter in the post saying that an appointment had been made with my surgeon for the following Tuesday. This meant that there was obviously something there that needed cutting out, but what and where?! My imagination was working over time! I called my CNS nurse, but she was on holiday! I just couldn't think straight. I called my surgeon's secretary to try and get more info. My surgeon was in clinic but his secretary kindly said she would see if he could give me a call. The secretary called back and arranged for me to see the surgeon the next day rather than wait a week. Mum and Dad rushed up to London to come with me.
When we saw the surgeon, he explained that the PET scan had picked up 'something suspicious that glows' roughly in the region of my left ovary (the same area where the CT had picked up something). With the two operations I had already had, they weren't sure if and what it could be attached to as my innerds were likely not in the correct anatomical position anymore. Therefore, it could be attached to the ovary, my womb, the outside of what's left of my bowel, my bladder or the peritoneum! Cripes! The list was near endless! The best way to find out would be to open me up and then they could remove it at the same time! (Gulp) This would potentially leave me with an illiostomy, if it was attached to the outside of the bowel and therefore they would have to remove more of the bowel (I was only just able to get away without having one when I had my initial bowel surgery). I was given a surgery date of a meat two weeks later! (Gulp, gulp) To check that there were no signs from the inside of a tumour pushing in from the outside, I was to have a colonoscopy the day before the operation (triple gulp)!
As they didn't know exactly what they were going to find, I had to effectively sign a blank cheque when I consented for the operation. I had already said that if it was attached to the ovary or womb, then they could remove it. I wanted more to have the best chance of survival than worry about having children. I'm now 35 and so my chances were reducing anyway. I also think that there are plenty of children out there that need love if and when I am in a position to want a family. Besides, who knows what effect the chemo had already had!
Anyway, after long delays before the colonoscopy because of equipment problems, the scope came back fine, with no sign of any intrusion (phew). After a dinner of soup (welcome after no food for more than a day), it was finally the night before my operation. With all the unknowns, we didn't know how long I would be in hospital for or how long recovery would be. All the unknowns were a bit scary! At 7am the next morning, I was admitted. The operation didn't take place until the afternoon and the last thing I remember was going to sleep in the anesthetiser room at 12.10pm.
I woke up again around 5 hours later. My surgeon was soon at my bedside and he explained that they had found the growth on my womb and a cyst on one of my ovaries, which had become stuck together, so they had done a hysterectomy!! (Huge gulp)
I spent the next four days in hospital recovering on the ward. I was mobile a lot quicker than my first operation and with having the morphine pump to control my pain I got on better. They had cut out my original bowel surgery scar and just extended the cut a bit to access my abdomen so in effect I have had a big of a tummy tuck (not as much of one as I would like, but hey ho ;-)) the new scar is also very wiggly, which has made for some interesting times trying to get the dressings to cover it! Sometimes I think it would be easier if the surgeons could cut me the same length as the dressings and in a straight line ;-)
Sarah looked after me for the first couple of weeks at home and then I came to my parents place. It is now just over 3 weeks since the operation and I am recovering well. The staples were taken out by my surgeon when I saw him for follow up about 10 days ago. He was pleased with how everything was healing, as was my Gynae surgeon. They said that it was another bowel cancer met rather than a new type of cancer. My oncologist, who I saw a week ago, said that there was no need for chemo (yay)! I am still waiting to hear if I need radiotherapy - it will depend on how big the margins around the tumour they were able to cut out). The decision on this comes on Monday. Fingers crossed it won't be needed!
I have been very luck with being able to see friends whilst I have been in recovery and thank you all for the well wishes, cards, pressies, tweets, texts, calls etc! You are all so kind! I have decided that this will be my last adventure with cancer and am now looking forward to getting back to full health and enjoying the rest of my life - so many things to do, places to go, people to meet! And I'll now save a fortune on tampax to help me fund it! ;-)
Take care everyone
All my love
Xxx
I had a bit of a shock when it came to finding out that there was something not right with the scan results. I was due to get them from my oncologist a couple of weeks after the scan. On the Monday before this I got a letter in the post saying that an appointment had been made with my surgeon for the following Tuesday. This meant that there was obviously something there that needed cutting out, but what and where?! My imagination was working over time! I called my CNS nurse, but she was on holiday! I just couldn't think straight. I called my surgeon's secretary to try and get more info. My surgeon was in clinic but his secretary kindly said she would see if he could give me a call. The secretary called back and arranged for me to see the surgeon the next day rather than wait a week. Mum and Dad rushed up to London to come with me.
When we saw the surgeon, he explained that the PET scan had picked up 'something suspicious that glows' roughly in the region of my left ovary (the same area where the CT had picked up something). With the two operations I had already had, they weren't sure if and what it could be attached to as my innerds were likely not in the correct anatomical position anymore. Therefore, it could be attached to the ovary, my womb, the outside of what's left of my bowel, my bladder or the peritoneum! Cripes! The list was near endless! The best way to find out would be to open me up and then they could remove it at the same time! (Gulp) This would potentially leave me with an illiostomy, if it was attached to the outside of the bowel and therefore they would have to remove more of the bowel (I was only just able to get away without having one when I had my initial bowel surgery). I was given a surgery date of a meat two weeks later! (Gulp, gulp) To check that there were no signs from the inside of a tumour pushing in from the outside, I was to have a colonoscopy the day before the operation (triple gulp)!
As they didn't know exactly what they were going to find, I had to effectively sign a blank cheque when I consented for the operation. I had already said that if it was attached to the ovary or womb, then they could remove it. I wanted more to have the best chance of survival than worry about having children. I'm now 35 and so my chances were reducing anyway. I also think that there are plenty of children out there that need love if and when I am in a position to want a family. Besides, who knows what effect the chemo had already had!
Anyway, after long delays before the colonoscopy because of equipment problems, the scope came back fine, with no sign of any intrusion (phew). After a dinner of soup (welcome after no food for more than a day), it was finally the night before my operation. With all the unknowns, we didn't know how long I would be in hospital for or how long recovery would be. All the unknowns were a bit scary! At 7am the next morning, I was admitted. The operation didn't take place until the afternoon and the last thing I remember was going to sleep in the anesthetiser room at 12.10pm.
I woke up again around 5 hours later. My surgeon was soon at my bedside and he explained that they had found the growth on my womb and a cyst on one of my ovaries, which had become stuck together, so they had done a hysterectomy!! (Huge gulp)
I spent the next four days in hospital recovering on the ward. I was mobile a lot quicker than my first operation and with having the morphine pump to control my pain I got on better. They had cut out my original bowel surgery scar and just extended the cut a bit to access my abdomen so in effect I have had a big of a tummy tuck (not as much of one as I would like, but hey ho ;-)) the new scar is also very wiggly, which has made for some interesting times trying to get the dressings to cover it! Sometimes I think it would be easier if the surgeons could cut me the same length as the dressings and in a straight line ;-)
Sarah looked after me for the first couple of weeks at home and then I came to my parents place. It is now just over 3 weeks since the operation and I am recovering well. The staples were taken out by my surgeon when I saw him for follow up about 10 days ago. He was pleased with how everything was healing, as was my Gynae surgeon. They said that it was another bowel cancer met rather than a new type of cancer. My oncologist, who I saw a week ago, said that there was no need for chemo (yay)! I am still waiting to hear if I need radiotherapy - it will depend on how big the margins around the tumour they were able to cut out). The decision on this comes on Monday. Fingers crossed it won't be needed!
I have been very luck with being able to see friends whilst I have been in recovery and thank you all for the well wishes, cards, pressies, tweets, texts, calls etc! You are all so kind! I have decided that this will be my last adventure with cancer and am now looking forward to getting back to full health and enjoying the rest of my life - so many things to do, places to go, people to meet! And I'll now save a fortune on tampax to help me fund it! ;-)
Take care everyone
All my love
Xxx
Sunday, 28 April 2013
The madness continues - Race for Life
OK then folks, I've already been called crazy for doing this, but I am determined that I am going to complete the Race for Life at Crystal Palace Park on Sunday 23rd June 2013. This will be 46 days after my operation - plenty of time, right?!?! I need to have something positive to aim for as I recover from the operation. Anyway, the plan to run the Race this year is out of the window, but a slow shuffle should eventually cover the 5km I am sure. Does anyone know if there is a time limit??!! Maybe I can set the record for the slowest Race for Life!! ;-)
Anyway, any ladies out there wanting to join me, here's where you sign up:
Crystal Palace London Race for Life 2013 sign up
Of course, cheer-squads are more than welcome to help me get round the course!!!
Oh, and if there's any spare pennies floating around, I would be very grateful for sponsors:
Rach's Race for Life sponsor page
Thank you all
xxxxx
Anyway, any ladies out there wanting to join me, here's where you sign up:
Crystal Palace London Race for Life 2013 sign up
Of course, cheer-squads are more than welcome to help me get round the course!!!
Oh, and if there's any spare pennies floating around, I would be very grateful for sponsors:
Rach's Race for Life sponsor page
Thank you all
xxxxx
Pick Me Up interview
Hi folks,
Here's the interview I did with Pick Me Up magazine for Bowel Cancer Awareness Month. There's been a lot of journalistic interpretation of my story to fit the style of the magazine, but the main thing is to raise awareness.
xxxx
Here's the interview I did with Pick Me Up magazine for Bowel Cancer Awareness Month. There's been a lot of journalistic interpretation of my story to fit the style of the magazine, but the main thing is to raise awareness.
xxxx
Tuesday, 9 April 2013
My TV appearance!
Here's a copy of the interview I did with BBC London News on Thursday 4th April 2013. I am not sure why it won't play on iphones or ipads - if anyone knows how to make it work, please let me know and I will try and fix it (not very technically minded at all)
xxxx
Sunday, 2 December 2012
Golly, it's been a while!
Well folks, I can't believe it has been over a month since I last wrote a post! I'd like to take this opportunity to welcome you all to winter, well if you're in the northern hemisphere anyway, and happy second day of advent! Hope that opening those little doors every morning has revealed some treats! I'm very lucky this year and have four advent calendars on the go!!!! As well as a wee bit of chocolate, I get a Liz Earle mini from their advent calendar, a mini pot of nail polish from my Ciaté one (Thank you so much Lesley and Laura for this) and on my iPhone I get a photo from A Year to Celebrate 2012 app, to remind me what a great year this has been.
Anyway, where did I leave off with this blog ... (Goes back to read last post) ....
Oh yes, I remember now ... I'd seen the registrar and they thought my scan was all clear. Well, after a week of waiting back at Mum and Dad's, I came back to London to find an answer phone message from the registrar confirming that the scan report was in and that it was indeed all clear - phew! The message had been left the Monday after I'd been to the hospital (a week before I found it), so why couldn't the registrar have called me on my mobile? They had the number! Oh well, what was done was done. Now I could get on with enjoying my time off before my planned return to work in the last week in November. Oh yes, and I was recovering from my treatment and building my strength back up ;-)
During my week at Mum and Dad's I went down to Dorset to celebrate the christening of a good friend's daughter. This was a lovely day and I really enjoyed catching up with everyone! Thank you so much Poppy for inviting me to your special day!
Half term week bought my good friend Sarah to London and with it a lovely catch up session and a trip to the cinema to see the lovely Mr Bond! ;-) I really enjoyed Skyfall but was thankful that the seats were comfy! I'd recommend seeing it if you are one of the few that hasn't already!
I think that bought me to the end of October and therefore into the month of my return to work - eek! I was feeling loads better already and my cetuximab rash was beginning to clear up, so I was looking less scarey too. A trip to the hairdessers for a colour and cut helped with this too. I was even managing to stay awake all day (no more afternoon naps). I was getting out on my walks and enjoying some lovely sessions with my yogi! It was time to start planning again. I wanted to do some sort of retreat to try and help set me on a healthy footing. Initially I wanted to try and fit something in before going back to work, but in the end I decided that I'd prefer to do something when I was sure I'd have the energy to enjoy it and make the most of the experience. Therefore, I have booked myself onto an 8 day retreat in Costa Rica in February, which I am SOOOOOOOO excited about!!!! It is aimed at people affected by cancer and as well as yoga, meditation and healthy cooking classes, there is a trek up a volcano, rainforest hikes and visits to the local villages! It all sounds so much fun and just up my street! Hopefully my sister will be able to come too, but it will depend on her work - she's just changed jobs. If she can't make it, off I go on my first holiday on my own! How have I got to be a single 34 year old without doing that before? Anyway, my aim now is to try and be as fit and healthy as I can be to make the most of my trip.
November has bought with it the opportunity to meet up with friends, both old and new. I had a lovely pamper session with Lucy, a day of culture at the Science Museum and V& A with Jo and Oliver and a lovely walk in the park with Nikki and Callan. I have also managed to meet up with some of my lovely new friends that I have met through twitter that have also been affected by bowel cancer. There are far too many of you to mention individually but it has been great to meet you all and I hope that we can meet again soon - you are all so lovely and an inspiration and so special to me - thank you! I wouldn't have got through this year without you all! A special mention must go to Paul though, who invited me to join him and his friends to go to Twickenham to watch the England v South Africa rugby match. Despite the rain and the result, I had a really fun day! Thank you sooooo much Paul! :-) Hopefully over the coming months, I will be able to meet more of my twitter family!
Friday 23rd November bought with it the return trip to the hospital to see my oncologist. I'd been to the hospital a few days before to have blood taken so that the test results would be there ready for my clinic appointment. It was time to see what the all important CEA had done in the weeks since chemo had finished. I must admit, I was very nervous about this appointment, although I knew in my head that I had done everything I could to beat the cancer and I was feeling great. Mum and Dad came up to London and Dad came with me to the hospital. After the usual wait, my oncology consultant called us through. She asked how I was and then told me that everything was looking good. The CEA was now 8, and whilst not back within the normal range, it had certainly dropped from the last time, 5 weeks earlier, and was the lowest it has ever been recorded at for me. Yay!!! As a result of this, she doesn't want to see me again until March next year! This means that my next hospital appointments are with my surgeon at the beginning of February and then with my oncologist in mid March! I can't believe that I am now working in months rather than weeks! Hooray!!!
OK, the next milestone to get through was my return to work! It seemed to come around so quick and I was really looking forward to getting back and seeing everyone again. Thankfully the 8am starts and long shifts are waiting a bit longer as my managers have agreed to let me take it slowly with a phased return. As a result, I am currently working half days and not every day. So last Sunday evening I set my alarm for going back Monday morning. This week has gone well and although I have been tired, I have still managed to have a bit of a life around work - I really didn't want to go back to work but be too tired to do anything else, even just the little things like do my grocery shopping or clean the flat, which is why I'm doing the phased return thing, even though it means a few less ££ at the end of the month. Anyway, week two beacons this week, so hopefully that will go as well as last week. I've tried to be a bit prepared and have made some stuff for lunches that are in the freezer, and planned my other meals - hopefully I'll be able to resist the pasty shop at the station again, although they smell sooo good! ;-)
Now, I know many of you will be aware that November is the month of the dodgy tash in aid of Movember, raising money for prostate cancer. Well, did you know that December is the month of the dodgy beards? Decembeard is to help raise money and awareness of bowel cancer and so is therefore an event that is close to my heart. Both Bowel Cancer UK and Beating Bowel Cancer are hoping to get people to raise money for them by growing a beard. Now, as this is not something I can do very easily, I have decided to wear a cut out beard to raise money for both of these wonderful charities Now the plan at the moment is to wear the beards on 27th December and I am asking for sponsors for this. I know it's not the best time of the year for spare change, with Christmas just around the corner, but if you have any spare pennies I would be ever so grateful if you could bung them my way, via www.virginmoneygiving.com/RachelVince Thanks ever so much! Now, anyway, 27th December is my first live shift back at work, so it will be 11 hours sitting in the office. I will get photographic evidence that I will be wearing my beard though and I will of course wear it too and from work on the train and when I am out and about on my lunch break. I just have to figure out how I am going to eat my lunch and drink my tea - through a straw maybe?!?
I think that's about all my news for now ....
take care everyone
xxxxx
Anyway, where did I leave off with this blog ... (Goes back to read last post) ....
Oh yes, I remember now ... I'd seen the registrar and they thought my scan was all clear. Well, after a week of waiting back at Mum and Dad's, I came back to London to find an answer phone message from the registrar confirming that the scan report was in and that it was indeed all clear - phew! The message had been left the Monday after I'd been to the hospital (a week before I found it), so why couldn't the registrar have called me on my mobile? They had the number! Oh well, what was done was done. Now I could get on with enjoying my time off before my planned return to work in the last week in November. Oh yes, and I was recovering from my treatment and building my strength back up ;-)
During my week at Mum and Dad's I went down to Dorset to celebrate the christening of a good friend's daughter. This was a lovely day and I really enjoyed catching up with everyone! Thank you so much Poppy for inviting me to your special day!
Half term week bought my good friend Sarah to London and with it a lovely catch up session and a trip to the cinema to see the lovely Mr Bond! ;-) I really enjoyed Skyfall but was thankful that the seats were comfy! I'd recommend seeing it if you are one of the few that hasn't already!
I think that bought me to the end of October and therefore into the month of my return to work - eek! I was feeling loads better already and my cetuximab rash was beginning to clear up, so I was looking less scarey too. A trip to the hairdessers for a colour and cut helped with this too. I was even managing to stay awake all day (no more afternoon naps). I was getting out on my walks and enjoying some lovely sessions with my yogi! It was time to start planning again. I wanted to do some sort of retreat to try and help set me on a healthy footing. Initially I wanted to try and fit something in before going back to work, but in the end I decided that I'd prefer to do something when I was sure I'd have the energy to enjoy it and make the most of the experience. Therefore, I have booked myself onto an 8 day retreat in Costa Rica in February, which I am SOOOOOOOO excited about!!!! It is aimed at people affected by cancer and as well as yoga, meditation and healthy cooking classes, there is a trek up a volcano, rainforest hikes and visits to the local villages! It all sounds so much fun and just up my street! Hopefully my sister will be able to come too, but it will depend on her work - she's just changed jobs. If she can't make it, off I go on my first holiday on my own! How have I got to be a single 34 year old without doing that before? Anyway, my aim now is to try and be as fit and healthy as I can be to make the most of my trip.
November has bought with it the opportunity to meet up with friends, both old and new. I had a lovely pamper session with Lucy, a day of culture at the Science Museum and V& A with Jo and Oliver and a lovely walk in the park with Nikki and Callan. I have also managed to meet up with some of my lovely new friends that I have met through twitter that have also been affected by bowel cancer. There are far too many of you to mention individually but it has been great to meet you all and I hope that we can meet again soon - you are all so lovely and an inspiration and so special to me - thank you! I wouldn't have got through this year without you all! A special mention must go to Paul though, who invited me to join him and his friends to go to Twickenham to watch the England v South Africa rugby match. Despite the rain and the result, I had a really fun day! Thank you sooooo much Paul! :-) Hopefully over the coming months, I will be able to meet more of my twitter family!
Friday 23rd November bought with it the return trip to the hospital to see my oncologist. I'd been to the hospital a few days before to have blood taken so that the test results would be there ready for my clinic appointment. It was time to see what the all important CEA had done in the weeks since chemo had finished. I must admit, I was very nervous about this appointment, although I knew in my head that I had done everything I could to beat the cancer and I was feeling great. Mum and Dad came up to London and Dad came with me to the hospital. After the usual wait, my oncology consultant called us through. She asked how I was and then told me that everything was looking good. The CEA was now 8, and whilst not back within the normal range, it had certainly dropped from the last time, 5 weeks earlier, and was the lowest it has ever been recorded at for me. Yay!!! As a result of this, she doesn't want to see me again until March next year! This means that my next hospital appointments are with my surgeon at the beginning of February and then with my oncologist in mid March! I can't believe that I am now working in months rather than weeks! Hooray!!!
OK, the next milestone to get through was my return to work! It seemed to come around so quick and I was really looking forward to getting back and seeing everyone again. Thankfully the 8am starts and long shifts are waiting a bit longer as my managers have agreed to let me take it slowly with a phased return. As a result, I am currently working half days and not every day. So last Sunday evening I set my alarm for going back Monday morning. This week has gone well and although I have been tired, I have still managed to have a bit of a life around work - I really didn't want to go back to work but be too tired to do anything else, even just the little things like do my grocery shopping or clean the flat, which is why I'm doing the phased return thing, even though it means a few less ££ at the end of the month. Anyway, week two beacons this week, so hopefully that will go as well as last week. I've tried to be a bit prepared and have made some stuff for lunches that are in the freezer, and planned my other meals - hopefully I'll be able to resist the pasty shop at the station again, although they smell sooo good! ;-)
Now, I know many of you will be aware that November is the month of the dodgy tash in aid of Movember, raising money for prostate cancer. Well, did you know that December is the month of the dodgy beards? Decembeard is to help raise money and awareness of bowel cancer and so is therefore an event that is close to my heart. Both Bowel Cancer UK and Beating Bowel Cancer are hoping to get people to raise money for them by growing a beard. Now, as this is not something I can do very easily, I have decided to wear a cut out beard to raise money for both of these wonderful charities Now the plan at the moment is to wear the beards on 27th December and I am asking for sponsors for this. I know it's not the best time of the year for spare change, with Christmas just around the corner, but if you have any spare pennies I would be ever so grateful if you could bung them my way, via www.virginmoneygiving.com/RachelVince Thanks ever so much! Now, anyway, 27th December is my first live shift back at work, so it will be 11 hours sitting in the office. I will get photographic evidence that I will be wearing my beard though and I will of course wear it too and from work on the train and when I am out and about on my lunch break. I just have to figure out how I am going to eat my lunch and drink my tea - through a straw maybe?!?
I think that's about all my news for now ....
take care everyone
xxxxx
Friday, 19 October 2012
Is this it?
Sorry it's been a while since I last blogged but it's been a busy couple of weeks. I've managed to go to the hospital 6 times in the last two weeks! That sounds a lot doesnt it, even for me!
Well, I guess, like many stories, it's best to begin at the beginning ...
I told you all about the fun I had on Monday 8th on what was meant to be my last chemo day, in my last post, so I guess I can actually skip over visit 1.
Visit 2 was Wednesday 10th for the chemo attempt 2. This was meant to be a straight forward 2-3 hours for the oxyplatin infusion and then the 5fu pump attachment (aka the infamous condom bottle). The day did also involve a shift change as sis handed over to mum as baby sitter. Well, needless to say, there was a bit of a wait to start treatment and so we'd been going about half an hour when it came time for sis to hand over to mum. I had managed to have both lines of my PICC successfully flushed and the chemo to start. I should say now I guess that my double PICC has been a bit temperamental and has had a tendency to block. Anyway, it only took a few minutes for sis to leave before the alarms on the IV to start going off to tell us that on both lines had obstructions! Uh oh! I guess the curse of me and mum was to strike again! I've had both PICCs used as at the same time as the oxyplatin infusion, I've been having a frolic acid infusion. For some reason, after working fine for half an hour, both lines had had enough. My lovely chemo nurse flushed both lines again, with great difficulty and put some urokinase (a clot buster drug) down the lines to try and clear them. After much head scratching by four of the nurses on the unit, including the two sisters, it was decided that they would try putting the infusions through at half speed. Thankfully this worked and the lovely drugs finally went into my system! I never seem to do anything the easy way and I guess my body decided that it wanted to make what is hopefully my last chemo session a memorable one for me and the staff! :-)
Thursday was a quiet and uneventful day, thankfully, and then it was time for the final condom bottle to be removed. Friday brought visit number 3 for this to be done. Because of the PICC problems on Wednesday I had been nervous that the pump wouldn't work, to such an extent that I'd even been weighing the bottle to check it was getting lighter! (it takes about a day or so for the condom to visibly shrink) thankfully the bottle was getting lighter! I guess at an infusion rate of 2.5ml an hour, it was slow enough to cope with even a partially blocked line. The condom bottle was dispensed with no problem, and my nurse gave both PICCs a good flush. I now am the proud owner of a redundant bottle pouch on a belt - I guess it'll be good for the hip flask! ;-)
Mum and Dad stayed with me over the weekend as I wasn't really up to much, thanks to the cumulative side effects of the chemo - tiredness was the main issue, along with some nausea, so I think I spent a lot of the weekend asleep! Not much entertainment value there for the parents! Sorry folks!
Right, week 2 started with visit number 4 on Monday morning - CT scan time! My nausea is normally eased by having a little something to eat, but as my scan was at 9.30am and I wasn't allowed anything to eat for 6 hours before, we had to come up with a new plan! Thankfully, those acupressure bands that you can buy for travel sickness seemed to help. Dad and I headed to the hospital and thankfully there wasn't too long to wait before I was taken into the scan room. Now, there have been issues in the past with me having scans (firemen, lost veins, PICC line problems) but thankfully this time went relatively smoothly. I had the lovely contrast put through my PICC and had the scan done, all in about 10 minutes. Then came the blip - they had taken off the dressing over my PICC to put the contrast through and only had a cannula dressing (basically a piece of sticky dressing with no gauze or anything) to cover it - they put that on to stop the PICC falling out (the PICC was held in by two stitches, so wasn't likely to go anywhere). Anyway, as the scanning department couldn't redress my PICC and I couldn't do it either as they hadn't cleaned it ( I had a couple of dressings with me) Dad and I headed up to the day unit and the nurses there kindly sorted me out with a cleaned and flushed PICC and it nicely blanketed up in dressings, all nice and cozy!
Visit 5 was for a blood test, so on Wednesday I headed back to the day unit for a hour and a half wait before a quick 5 minute job! You've got to love the NHS sometimes, don't you?! Anyway, that was all done and dusted, with an appointment made for a PICC flush in 10 days time.
Now today was visit 6 to the hospital and was to be by far the most significant. Today I was due to get the results of the scan and from that my consultant was to decide if I am cancer free!! Eek! Probably needless to say, its been a nervous few days and I've not been able to concentrate on much. Mum, Dad and sis came to the hospital with me - a bit like my entourage! We had a bit of a wait but nothing as long as normal and then one of the registrars called me through. Here goes! The registrar started off by saying that the scan report hadn't been done yet!!! What!!?? How can I have come to the hospital to get news like that!!?? Thankfully, he went on to explain that my oncology consultant had looked at the scan images though and as far as she could tell, there was nothing untoward on them. Phew!!! We'll have to wait for the formal report but hopefully that will say the same thing. The cancer markers in my blood (The CEA) are a little elevated, at 14 (normal levels are below 5, but I have had mine up in the 70s). This marker can be elevated as a result of chemo though, so it is not really reliable so close to chemo finishing. I am to go back to see the consultant in 5 weeks, by which time hopefully the marker will have dropped and it will be confirmed that I don't need any more treatment. The best bit today though was the fact that I had my PICC taken out (its left a lovely bruise!). For me this is a great indication that the doctors think that no more treatment will be needed as if they thought it was a possibility that I'd need more chemo then they would have said to leave it in for now! The registrar took the line out there and then! He did make a bit of a hash of dressing it though - typical doctor! ;-) Anyway, I am now PICC free and the days of wrapping my arm in cling-film to have a shower are in the past again! Yay!!
To celebrate what we consider a good news day, the family are playing sardines staying in my ickle flat tonight, so we got a take away and opened a bottle of wine. Now, I have not had any alcohol since before I started this second chemo encounter back in February, so having a glass of a very nice red went straight to my head!! Hic!
Anyway, on the day we are all standing up to cancer, I have and I think I have finally kicked its ass!! (I can say that, I've had bowel cancer!)
I would like to take this opportunity to thank everyone for all their support and love that you have given me as I have encountered chemo again - I wouldn't have got through it without you all!! Oh goodness, I must be a bit tipsy - I LOVE YOU!!! Hic hic ;-)
xxxxx
Well, I guess, like many stories, it's best to begin at the beginning ...
I told you all about the fun I had on Monday 8th on what was meant to be my last chemo day, in my last post, so I guess I can actually skip over visit 1.
Visit 2 was Wednesday 10th for the chemo attempt 2. This was meant to be a straight forward 2-3 hours for the oxyplatin infusion and then the 5fu pump attachment (aka the infamous condom bottle). The day did also involve a shift change as sis handed over to mum as baby sitter. Well, needless to say, there was a bit of a wait to start treatment and so we'd been going about half an hour when it came time for sis to hand over to mum. I had managed to have both lines of my PICC successfully flushed and the chemo to start. I should say now I guess that my double PICC has been a bit temperamental and has had a tendency to block. Anyway, it only took a few minutes for sis to leave before the alarms on the IV to start going off to tell us that on both lines had obstructions! Uh oh! I guess the curse of me and mum was to strike again! I've had both PICCs used as at the same time as the oxyplatin infusion, I've been having a frolic acid infusion. For some reason, after working fine for half an hour, both lines had had enough. My lovely chemo nurse flushed both lines again, with great difficulty and put some urokinase (a clot buster drug) down the lines to try and clear them. After much head scratching by four of the nurses on the unit, including the two sisters, it was decided that they would try putting the infusions through at half speed. Thankfully this worked and the lovely drugs finally went into my system! I never seem to do anything the easy way and I guess my body decided that it wanted to make what is hopefully my last chemo session a memorable one for me and the staff! :-)
Thursday was a quiet and uneventful day, thankfully, and then it was time for the final condom bottle to be removed. Friday brought visit number 3 for this to be done. Because of the PICC problems on Wednesday I had been nervous that the pump wouldn't work, to such an extent that I'd even been weighing the bottle to check it was getting lighter! (it takes about a day or so for the condom to visibly shrink) thankfully the bottle was getting lighter! I guess at an infusion rate of 2.5ml an hour, it was slow enough to cope with even a partially blocked line. The condom bottle was dispensed with no problem, and my nurse gave both PICCs a good flush. I now am the proud owner of a redundant bottle pouch on a belt - I guess it'll be good for the hip flask! ;-)
Mum and Dad stayed with me over the weekend as I wasn't really up to much, thanks to the cumulative side effects of the chemo - tiredness was the main issue, along with some nausea, so I think I spent a lot of the weekend asleep! Not much entertainment value there for the parents! Sorry folks!
Right, week 2 started with visit number 4 on Monday morning - CT scan time! My nausea is normally eased by having a little something to eat, but as my scan was at 9.30am and I wasn't allowed anything to eat for 6 hours before, we had to come up with a new plan! Thankfully, those acupressure bands that you can buy for travel sickness seemed to help. Dad and I headed to the hospital and thankfully there wasn't too long to wait before I was taken into the scan room. Now, there have been issues in the past with me having scans (firemen, lost veins, PICC line problems) but thankfully this time went relatively smoothly. I had the lovely contrast put through my PICC and had the scan done, all in about 10 minutes. Then came the blip - they had taken off the dressing over my PICC to put the contrast through and only had a cannula dressing (basically a piece of sticky dressing with no gauze or anything) to cover it - they put that on to stop the PICC falling out (the PICC was held in by two stitches, so wasn't likely to go anywhere). Anyway, as the scanning department couldn't redress my PICC and I couldn't do it either as they hadn't cleaned it ( I had a couple of dressings with me) Dad and I headed up to the day unit and the nurses there kindly sorted me out with a cleaned and flushed PICC and it nicely blanketed up in dressings, all nice and cozy!
Visit 5 was for a blood test, so on Wednesday I headed back to the day unit for a hour and a half wait before a quick 5 minute job! You've got to love the NHS sometimes, don't you?! Anyway, that was all done and dusted, with an appointment made for a PICC flush in 10 days time.
Now today was visit 6 to the hospital and was to be by far the most significant. Today I was due to get the results of the scan and from that my consultant was to decide if I am cancer free!! Eek! Probably needless to say, its been a nervous few days and I've not been able to concentrate on much. Mum, Dad and sis came to the hospital with me - a bit like my entourage! We had a bit of a wait but nothing as long as normal and then one of the registrars called me through. Here goes! The registrar started off by saying that the scan report hadn't been done yet!!! What!!?? How can I have come to the hospital to get news like that!!?? Thankfully, he went on to explain that my oncology consultant had looked at the scan images though and as far as she could tell, there was nothing untoward on them. Phew!!! We'll have to wait for the formal report but hopefully that will say the same thing. The cancer markers in my blood (The CEA) are a little elevated, at 14 (normal levels are below 5, but I have had mine up in the 70s). This marker can be elevated as a result of chemo though, so it is not really reliable so close to chemo finishing. I am to go back to see the consultant in 5 weeks, by which time hopefully the marker will have dropped and it will be confirmed that I don't need any more treatment. The best bit today though was the fact that I had my PICC taken out (its left a lovely bruise!). For me this is a great indication that the doctors think that no more treatment will be needed as if they thought it was a possibility that I'd need more chemo then they would have said to leave it in for now! The registrar took the line out there and then! He did make a bit of a hash of dressing it though - typical doctor! ;-) Anyway, I am now PICC free and the days of wrapping my arm in cling-film to have a shower are in the past again! Yay!!
To celebrate what we consider a good news day, the family are playing sardines staying in my ickle flat tonight, so we got a take away and opened a bottle of wine. Now, I have not had any alcohol since before I started this second chemo encounter back in February, so having a glass of a very nice red went straight to my head!! Hic!
Anyway, on the day we are all standing up to cancer, I have and I think I have finally kicked its ass!! (I can say that, I've had bowel cancer!)
I would like to take this opportunity to thank everyone for all their support and love that you have given me as I have encountered chemo again - I wouldn't have got through it without you all!! Oh goodness, I must be a bit tipsy - I LOVE YOU!!! Hic hic ;-)
xxxxx
Monday, 8 October 2012
One last chemo day ... Or not!
Ok, so today was meant to be my last day of chemo, after near two years of treatment, well apart from the 7 months off when they thought I was cancer free, I have been really looking forward to this being it and moving into the monitoring phase. I must admit though that I have been a bit nervous too, with the luck that I have, could today really be it?! Well, as it turns out, I haven't finished chemo!
Having rocked up to he hospital for my 10 o'clock appointment, we were told that the chemo wasn't ready yet. Now this we weren't surprised by - the pharmacy never seems to have things ready on time. Anyway, after a bit of a wait, I was called through to the chemo day unit. Then came the first issue of the day. I'm not sure if I've mentioned it before, but this time I have a double PICC (2 lines going into me) and it seems that one of the lines likes to be blocked each time I turn up at the hospital. They take it in turns though just to be fair! Anyway, this time the nurse couldn't flush the clot out and unblock the line so I was given some urokinase to break down any clots in the line. Thankfully this did the trick and I have two working lines again, for now anyway!
I had my mouse drug connected and away we were for the first drug! Alas, as this was being checked, the nurses realised that this was the only drug that had been prescribed! Not again! Having had the same problem with the first cycle of this round of chemo, I knew that this wasn't likely to be quickly sorted. However, I hoped that it could all be sorted in the two hours that it would take for the mouse drug to be infused. The nurses contacted the duty colorectal oncology registrar. From the notes, which thankfully were on the unit this time, the nurses could see that my oncology consultant wanted me to have the full chemo again for one last time. However, the registrar turned out to be a bit of a tw*t and wouldn't just come up to see the notes and prescribe the medication. Instead he insisted that he wanted to talk to my consultant (who doesn't work Mondays as far as I know) and he'd then call back. We still hadn't heard from the reg by the time the mouse drug had finished or by the time that the flush was done (another 30 minutes), despite the nurses paging him 4 more times. The nurses even tried to call my consultant directly, but only got her voicemail. By this time it was 3 o'clock and even if the reg would prescribe it, there wasn't time for the pharmacy to make it up and for it to be given to me before the unit closed for the night. Grrrrrr! We were then advised to go home and I now have an appointment for Wednesday afternoon to hopefully have the chemo drugs. Such a frustrating day!
Oh well, at least I'm not cold sensitive at the moment, so I was able to enjoy some fresh (but cold) pomegranate this evening! You've always got to look on the bright side! ;-)
Anyway ....
Yesterday I had a brilliant morning at the Royal Parks Half Marathon! I met up with the Beating Bowel Cancer crew at their cheer point just before mile 6 and doned my t-shirt (alas no bum shorts). We cheered all the runners past but especially those running for the charity - about 30 of them! I also saw Aisling and gave her a big hug! The last of the runners came past just before midday so the cheer point was packed up and I was able to go and see Aisling finish the run. She did amazingly well and finished in 2 hours 22 mins! I am so proud of her! Well done Ais!
Well, I think that's it from me for tonight.
Take care folks
Xxxx
Having rocked up to he hospital for my 10 o'clock appointment, we were told that the chemo wasn't ready yet. Now this we weren't surprised by - the pharmacy never seems to have things ready on time. Anyway, after a bit of a wait, I was called through to the chemo day unit. Then came the first issue of the day. I'm not sure if I've mentioned it before, but this time I have a double PICC (2 lines going into me) and it seems that one of the lines likes to be blocked each time I turn up at the hospital. They take it in turns though just to be fair! Anyway, this time the nurse couldn't flush the clot out and unblock the line so I was given some urokinase to break down any clots in the line. Thankfully this did the trick and I have two working lines again, for now anyway!
I had my mouse drug connected and away we were for the first drug! Alas, as this was being checked, the nurses realised that this was the only drug that had been prescribed! Not again! Having had the same problem with the first cycle of this round of chemo, I knew that this wasn't likely to be quickly sorted. However, I hoped that it could all be sorted in the two hours that it would take for the mouse drug to be infused. The nurses contacted the duty colorectal oncology registrar. From the notes, which thankfully were on the unit this time, the nurses could see that my oncology consultant wanted me to have the full chemo again for one last time. However, the registrar turned out to be a bit of a tw*t and wouldn't just come up to see the notes and prescribe the medication. Instead he insisted that he wanted to talk to my consultant (who doesn't work Mondays as far as I know) and he'd then call back. We still hadn't heard from the reg by the time the mouse drug had finished or by the time that the flush was done (another 30 minutes), despite the nurses paging him 4 more times. The nurses even tried to call my consultant directly, but only got her voicemail. By this time it was 3 o'clock and even if the reg would prescribe it, there wasn't time for the pharmacy to make it up and for it to be given to me before the unit closed for the night. Grrrrrr! We were then advised to go home and I now have an appointment for Wednesday afternoon to hopefully have the chemo drugs. Such a frustrating day!
Oh well, at least I'm not cold sensitive at the moment, so I was able to enjoy some fresh (but cold) pomegranate this evening! You've always got to look on the bright side! ;-)
Anyway ....
Yesterday I had a brilliant morning at the Royal Parks Half Marathon! I met up with the Beating Bowel Cancer crew at their cheer point just before mile 6 and doned my t-shirt (alas no bum shorts). We cheered all the runners past but especially those running for the charity - about 30 of them! I also saw Aisling and gave her a big hug! The last of the runners came past just before midday so the cheer point was packed up and I was able to go and see Aisling finish the run. She did amazingly well and finished in 2 hours 22 mins! I am so proud of her! Well done Ais!
Well, I think that's it from me for tonight.
Take care folks
Xxxx
Thursday, 4 October 2012
Quick recommendation
Hola amigos!
I just wanted to share with you a great website for healthy recipes:
Wholefoods Market Recipes
I have the app on my phone and tablet but the website has the same recipes as far as I can see. I've tried a number of the recipes over the last few months and have not been disappointed yet. The only slight hitch is that as it is an American website / app, all the measurements are in cups. I've got round this by using my trusty Tala cooks measure though, so no problems really.
I just wanted to share this with you all.
As you were
:-) xxx
I just wanted to share with you a great website for healthy recipes:
Wholefoods Market Recipes
I have the app on my phone and tablet but the website has the same recipes as far as I can see. I've tried a number of the recipes over the last few months and have not been disappointed yet. The only slight hitch is that as it is an American website / app, all the measurements are in cups. I've got round this by using my trusty Tala cooks measure though, so no problems really.
I just wanted to share this with you all.
As you were
:-) xxx
Tuesday, 2 October 2012
White gloves
I'm typing this whilst wearing gloves so please forgive my typos! Why am I wearing gloves i hear you ask? Well, don't worry it is not that cold in my flat! The heating was turned on in my building yesterday and with the one radiator in my flat, I am now nice and toastie with the lounge currently 25c!! I have had to open the windows and turn the radiator off! Anyway, I am wearing gloves because my skin is so dry now thanks to the mouse drug that my hands are beginning to crack - ow! I'm therefore smothering them in super strong hand cream and wearing cotton gloves to help it get absorbed by my hands (as well as making sure I don't leave a greasy trail over everything I touch!). I look like some sort of mime artist!! It also puts me in mind of the ladies in the fifties that wore white gloves all the time - maybe I have watched 'The Help' too recently! Anyway, hopefully this technique will help my skin, even if it does make using touch screen devices rather laborious!
So what else has been happening in the world of Rach? Bet you've all been on the edge of your seats! ;-) Well, after last weeks trip to the Midlands and back, I had the penultimate condom bottle unattached on Wednesday afternoon, no problems. We didn't even get as far as the waiting room, as the chemo day unit was so quiet that the nurses could see to me straight away! I almost put my foot in it and said "it's dead in here" - not sure that would have gone down well, given the location though!
Sarah left me to my own devices on Thursday and I have been flying solo ever since. The first few days, I felt a bit icky, as usual with that stage of the chemo cycles, with not having much energy and feeling nauseous. I was also feeling the cold more than I have for a while. Thankfully, Monday brought a new week and it was as if a switch was flicked! I woke up feeling ok and with the heating now on, the cold sensitivity is now a lot better!
Yesterday afternoon I had my first yoga session since my operation! I can't believe it's been so long, but with everything that's been going on, it just hasn't been possible before now. It was really great to get moving again and give my body a good old stretch! It certainly needs it, with having been curled up on the sofa pretty much constantly for the last 3 months! Anyway, thanks so much Clare for the session and I am looking forward to the next one tomorrow afternoon.
On Friday, Dad and I are back off to clinic. Hopefully we'll see my normal oncologist and she can confirm once and for all what the treatment plan is. I received a copy of the letter that the other consultant sent my GP and in the section about treatment so far, it made no mention whatsoever about my liver surgery, which makes me even more sure that the consultant hadn't read through my notes enough to realise that this had taken place.
I'm hoping that the weekend will bring some fine weather as I'm having a day out on Sunday. My great friend Aisling is running the Royal Parks Half Marathon in aid of Sense and I'm off to cheer her on. I'm also hoping to meet up with some other Beating Bowel Cancer supporters to cheer on the runners raising money for that great charity! I am looking forward to it and have so much respect for people who go to so much effort raising money for so many worthwhile causes! Hopefully next year I'll be able to do my bit, although I'm not aiming for a half marathon just yet, don't worry Mum! It's going to be a bit of a sad day though as Aisling is moving to Exeter that evening ready to start her new job at the Met Office the next day. I'm going to miss you Ais, and wish you all the very best. Don't worry though, you can't get rid of me that easily! ;-)
Anyway, I'd better go and get some lunch.
Bye for now
Xxxx
So what else has been happening in the world of Rach? Bet you've all been on the edge of your seats! ;-) Well, after last weeks trip to the Midlands and back, I had the penultimate condom bottle unattached on Wednesday afternoon, no problems. We didn't even get as far as the waiting room, as the chemo day unit was so quiet that the nurses could see to me straight away! I almost put my foot in it and said "it's dead in here" - not sure that would have gone down well, given the location though!
Sarah left me to my own devices on Thursday and I have been flying solo ever since. The first few days, I felt a bit icky, as usual with that stage of the chemo cycles, with not having much energy and feeling nauseous. I was also feeling the cold more than I have for a while. Thankfully, Monday brought a new week and it was as if a switch was flicked! I woke up feeling ok and with the heating now on, the cold sensitivity is now a lot better!
Yesterday afternoon I had my first yoga session since my operation! I can't believe it's been so long, but with everything that's been going on, it just hasn't been possible before now. It was really great to get moving again and give my body a good old stretch! It certainly needs it, with having been curled up on the sofa pretty much constantly for the last 3 months! Anyway, thanks so much Clare for the session and I am looking forward to the next one tomorrow afternoon.
On Friday, Dad and I are back off to clinic. Hopefully we'll see my normal oncologist and she can confirm once and for all what the treatment plan is. I received a copy of the letter that the other consultant sent my GP and in the section about treatment so far, it made no mention whatsoever about my liver surgery, which makes me even more sure that the consultant hadn't read through my notes enough to realise that this had taken place.
I'm hoping that the weekend will bring some fine weather as I'm having a day out on Sunday. My great friend Aisling is running the Royal Parks Half Marathon in aid of Sense and I'm off to cheer her on. I'm also hoping to meet up with some other Beating Bowel Cancer supporters to cheer on the runners raising money for that great charity! I am looking forward to it and have so much respect for people who go to so much effort raising money for so many worthwhile causes! Hopefully next year I'll be able to do my bit, although I'm not aiming for a half marathon just yet, don't worry Mum! It's going to be a bit of a sad day though as Aisling is moving to Exeter that evening ready to start her new job at the Met Office the next day. I'm going to miss you Ais, and wish you all the very best. Don't worry though, you can't get rid of me that easily! ;-)
Anyway, I'd better go and get some lunch.
Bye for now
Xxxx
Tuesday, 25 September 2012
Treatment update
Well, I am so relieved to report that it looks like the consultant I saw last Friday was confused and I am not going to need the extra 6 months of cetuximab aka mouse drug! Yay! I saw Fiona, my CNS, yesterday whilst I was having my chemo and she was pretty sure that this was the case but she was awaiting confirmation from my normal consultant. She heard back this morning and kindly phoned with the good news! I am so relieved! Of course if it was deemed a good idea, I'd have had the treatment but I'm glad this will not be the case. I can now get on with making plans again without having to factor in weekly hospital visits!
Yesterday's chemo session was a bit of a long one! Now if all goes smoothly, it take about 5 and half to 6 hours (2 lots of 2 hours for the cetuximab and then oxyplatin, plus flushes on each line at the start, in between and at the end and then 5 minute bonus of 5 fu and then hooking up to pump aka condom bottle). Anyway, there was a 2 and a half hour delay getting the drugs up from pharmacy! I wasn't the only one who was affected by this and there was a rumour that the registrar was late prescribing the drugs. Grr! At least it gave the rain time to clear and the sun come out (and then set!).
Last night I got to experience a new side effect to me - jelly legs! Thankfully, my twitter friend Hayley reassured me that it would only last a few hours, which it did! Thanks so much Hayley! It's so great to be able to get advice and reassurance from others who are going through or have been through similar things to me, either via twitter or on the forums! Not sure what I would have done in the days before such things existed! Thank you all for your support!
I am now back to enjoying the cold sensitivity that comes with the oxyplatin. I've decamped to my sister's house in Leicester for the night and have made the most of being able to turn the heating on (I won't tell you what I've set the thermostat at!). In the building I live in, the heating doesn't get switched on until 1st October. Last year we were all complaining it made it too warm as it was 30c outside, but we can't wait this year! Brrrr!
As I said, I've come up to Leicester for the night - it's the first time my 5fu pump, aka the condom bottle, has been on holiday! As I'm only attached to it for 46 hours, it's never been worth leaving London before as I only get one day off between the hospital visits. However, Sarah had to come on a course back here this afternoon and I decided to give her a break from going up and down to London on the train by giving her the pleasure of driving up and down the m1 instead, with me tagging along as navigator, sweet dispenser and dj! I tell you what, the 12 miles of 50mph limit near Luton are boring - we saw 5 people working this morning! And as for lorries trying to over take each other on hills when they are all limited to 60mph, just don't get me started!
Anyway, that's enough from me for now! I'm off to fill in applications to do some volunteering for two wonderful charities, Beating Bowel Cancer and Bowel Cancer UK.
Bye
Xxxx
Yesterday's chemo session was a bit of a long one! Now if all goes smoothly, it take about 5 and half to 6 hours (2 lots of 2 hours for the cetuximab and then oxyplatin, plus flushes on each line at the start, in between and at the end and then 5 minute bonus of 5 fu and then hooking up to pump aka condom bottle). Anyway, there was a 2 and a half hour delay getting the drugs up from pharmacy! I wasn't the only one who was affected by this and there was a rumour that the registrar was late prescribing the drugs. Grr! At least it gave the rain time to clear and the sun come out (and then set!).
Last night I got to experience a new side effect to me - jelly legs! Thankfully, my twitter friend Hayley reassured me that it would only last a few hours, which it did! Thanks so much Hayley! It's so great to be able to get advice and reassurance from others who are going through or have been through similar things to me, either via twitter or on the forums! Not sure what I would have done in the days before such things existed! Thank you all for your support!
I am now back to enjoying the cold sensitivity that comes with the oxyplatin. I've decamped to my sister's house in Leicester for the night and have made the most of being able to turn the heating on (I won't tell you what I've set the thermostat at!). In the building I live in, the heating doesn't get switched on until 1st October. Last year we were all complaining it made it too warm as it was 30c outside, but we can't wait this year! Brrrr!
As I said, I've come up to Leicester for the night - it's the first time my 5fu pump, aka the condom bottle, has been on holiday! As I'm only attached to it for 46 hours, it's never been worth leaving London before as I only get one day off between the hospital visits. However, Sarah had to come on a course back here this afternoon and I decided to give her a break from going up and down to London on the train by giving her the pleasure of driving up and down the m1 instead, with me tagging along as navigator, sweet dispenser and dj! I tell you what, the 12 miles of 50mph limit near Luton are boring - we saw 5 people working this morning! And as for lorries trying to over take each other on hills when they are all limited to 60mph, just don't get me started!
Anyway, that's enough from me for now! I'm off to fill in applications to do some volunteering for two wonderful charities, Beating Bowel Cancer and Bowel Cancer UK.
Bye
Xxxx
Friday, 21 September 2012
Paralympics, christenings and, well, cancer
Hello!
Sorry it's been so long (again), folks! I can't believe it's already getting towards the end of September! Anyway, I guess you are wondering what has been happening in the world of Rach!? Well, there are a few things that have occurred.
First off, there was the Paralympics. How great we're they?!?! I loved watching the Olympics on tv, but the Paralympics were a whole other ball game for me, mainly because I got to go!!! Yes, I was very luck to spend four days dragging Dad around and sending him deaf by cheering so much! We managed to see some of the swimming, including an Ellie Simmonds gold medal, some of the athletics, including a David Weir gold medal, some of the wheelchair rugby, including a GB match, and the medal matches of the mens wheelchair basketball! (I'm so so lucky). I loved the whole experience, and even climbing all the stairs to get to the cheap seats was worth it! The Olympic Park was great and absolutely huge! Seeing all the iconic venues was brilliant, and soaking up the atmosphere was amazing! Where else in London would complete strangers sit and chat about things they have seen or going to see? And as for the games makers, police and members of the armed forces - they were brilliant and so friendly! We did begin to wonder how many happy pills they had to take though! ;-) I think that I have found a now sport to enjoy watching - the wheelchair rugby was brilliant! A lot of like wheelchair bumper cars combined with a bit of basketball and rugby! I'm definitely going to try and find some more matches to watch! We had a brilliant time and I was glad that we were able to go and that it was timed with my good week on chemo! Thanks to all the Paralympians for putting on a great show and for inspiring all of us to look for what we can do rather than what we can't! And thanks Dad for being my partner in crime and coming with me! I'll post some pics once I have gone through the 2000+ that I took!!!!
After the excitement of the Paralympics, it was back to the fun of the chemo ward, but more on that later.
Last weekend I went up to Lincolnshire for my cousin's little boy's christening. I hadn't seen any of that side of my extended family for over 2 years (since before diagnosis) so it was really great to see them all and catch up on everything that's been happening. I met Erin, the daughter of my cousin Philip and his wife Emma, for the first time, which was fun and by the end of the afternoon we were flying like birds together and she was showing me her Angry Birds prowes on Philip's iPhone! A very cute and clever little girl! To Erin, all I can say is "cheese" (she takes a great photo)!!! I also got to meet little Amelia, the daughter of my cousin James and his wife Cara. She was happily gumming the cucumber sticks and looking super cute! I just hope her teething isn't too painful for her. Of course, the star of the day was little Samuel, the son of my cousin Ann and her husband Nigel. He was such a well behaved little boy and looked lovely in his christening gown. I think it must have helped that it was his grandpa, my uncle, that was performing the service and doing the whole holy water bit. The afternoon tea after the service was very well catered and gave me a chance to catch up with other family members, including my cousin Matthew and his fiancé Bex, who are planning their wedding next year - can't wait for that guys! All in all it was a fantastic day and I was so glad to be able to come and see you all! I hope we can all catch up again soon!
The rest of the weekend Mum and I spent hanging out with Granny. Unfortunately I have had a cold for the last fortnight (picked up at the Paralympics I think, as Dad was suffering with it more than me) and it was the bad time of my chemo cycle for side effects, so I spent a lot of time resting / sleeping. It was really lovely to be with Mum and Granny though and hopefully next time I'll be more value for money!
As I mentioned, I have been suffering from a cold this last fortnight. Now this is not pleasant at the best of times, but the risk factor ups a couple of notches when you are on chemo. One of the things that chemo does is knock your immune system and so a cold could develop into something more sinister! Eek! Anyway, thankfully my white blood cell count was fairly normal and so for me, this is just behaving like a normal cold. It's annoying, but thankfully nothing worse and I'm keeping Kleenex and Olbas in business!
OK, now onto the cancer bit of this update (feel free to sign off and go and get a cup of tea now). Well, having had the cock ups with the first cycle of this round of chemo, I was hoping that we would be into smooth sailing mode, but someone somewhere had other ideas. The first clue was when a letter arrived from the hospital to say that my clinic appointment was being delayed three weeks! Now, I have to see one of the doctors in the clinic before each chemo appointment so that they can check I am coping OK with the treatment and they then prescribe the chemo drugs. This meant that a three week delay in the clinic appointment would lead to a three week delay in treatment! Not good! I got straight on the phone to find out what was going on and thankfully my MacMillan CNS (Clinical Nurse Specialist) sorted it so that I could see someone in clinic on the originally planned day. We never did find out who decided that there should be a three week delay - someone in admin probably! Anyway, the doctor was seen and chemo was duly administered on schedule - this time with all the drugs that I was supposed to get (no one knows why there was the prescription cock up with the first cycle). Anyway, since then I have been enjoying the side effects of chemo that seem to have got a little bit more pronounced quicker than they have in the past - I guess having a cold hasn't helped. I won't give you too many details, but I'll just say that the immodium has been put to the test and I've not been able to venture too far from a bathroom on more days than I would have liked! :-( Sorry if that is too much info! Anyway, (I say that a lot, don't I?!) we are now half way through the planned chemo and I am due to have my forth and (hopefully) final condom bottle disconnected on October 10th, which will be 23 months to the day since they first found the tumour! What an adventure it has been!! Fingers crossed that'll be me done with chemo for good! However, today in clinic, there was a curve ball thrown! Grrr! I saw a different consultant to my normal one today and he seemed to suggest that I may have to continue having the mouse drug fortnightly for another six months!!!! What!?? Sarah and I tried to find out more about this, and the doctor suggested that a maintenance regime would continue with that one drug! Technically it is a biological anti-body treatment rather than chemotherapy, but it would still tie me down to going to the hospital every week! Obviously, if this is considered the best option for me to make sure that I beat the cancer, then I will take the treatment, it just all came a bit out of the blue and it has never been mentioned before. It knocked us for 6 to say the least. I have been psyching myself up for treatment to all be done with in less than three weeks, but to hear that it could carry on until March is another matter entirely! Oh well! I have left a message with my CNS (she gets lots of calls from me) this afternoon to ask her to find out from my normal consultant what the game plan is. Hopefully she'll get back to me early next week with some answers. Until then, all plans are on hold again! Grrr!
Well, I think that about covers everything that's going on at the moment! I'm going to enjoy my weekend and then it is back to the chemo grindstone on Monday with at least 6 hours in the comfy chair and drips attached! Fun fun fun!
Have a good one everyone and thanks for reading (hope I haven't bored you!)
xxxx
Sorry it's been so long (again), folks! I can't believe it's already getting towards the end of September! Anyway, I guess you are wondering what has been happening in the world of Rach!? Well, there are a few things that have occurred.
First off, there was the Paralympics. How great we're they?!?! I loved watching the Olympics on tv, but the Paralympics were a whole other ball game for me, mainly because I got to go!!! Yes, I was very luck to spend four days dragging Dad around and sending him deaf by cheering so much! We managed to see some of the swimming, including an Ellie Simmonds gold medal, some of the athletics, including a David Weir gold medal, some of the wheelchair rugby, including a GB match, and the medal matches of the mens wheelchair basketball! (I'm so so lucky). I loved the whole experience, and even climbing all the stairs to get to the cheap seats was worth it! The Olympic Park was great and absolutely huge! Seeing all the iconic venues was brilliant, and soaking up the atmosphere was amazing! Where else in London would complete strangers sit and chat about things they have seen or going to see? And as for the games makers, police and members of the armed forces - they were brilliant and so friendly! We did begin to wonder how many happy pills they had to take though! ;-) I think that I have found a now sport to enjoy watching - the wheelchair rugby was brilliant! A lot of like wheelchair bumper cars combined with a bit of basketball and rugby! I'm definitely going to try and find some more matches to watch! We had a brilliant time and I was glad that we were able to go and that it was timed with my good week on chemo! Thanks to all the Paralympians for putting on a great show and for inspiring all of us to look for what we can do rather than what we can't! And thanks Dad for being my partner in crime and coming with me! I'll post some pics once I have gone through the 2000+ that I took!!!!
After the excitement of the Paralympics, it was back to the fun of the chemo ward, but more on that later.
Last weekend I went up to Lincolnshire for my cousin's little boy's christening. I hadn't seen any of that side of my extended family for over 2 years (since before diagnosis) so it was really great to see them all and catch up on everything that's been happening. I met Erin, the daughter of my cousin Philip and his wife Emma, for the first time, which was fun and by the end of the afternoon we were flying like birds together and she was showing me her Angry Birds prowes on Philip's iPhone! A very cute and clever little girl! To Erin, all I can say is "cheese" (she takes a great photo)!!! I also got to meet little Amelia, the daughter of my cousin James and his wife Cara. She was happily gumming the cucumber sticks and looking super cute! I just hope her teething isn't too painful for her. Of course, the star of the day was little Samuel, the son of my cousin Ann and her husband Nigel. He was such a well behaved little boy and looked lovely in his christening gown. I think it must have helped that it was his grandpa, my uncle, that was performing the service and doing the whole holy water bit. The afternoon tea after the service was very well catered and gave me a chance to catch up with other family members, including my cousin Matthew and his fiancé Bex, who are planning their wedding next year - can't wait for that guys! All in all it was a fantastic day and I was so glad to be able to come and see you all! I hope we can all catch up again soon!
The rest of the weekend Mum and I spent hanging out with Granny. Unfortunately I have had a cold for the last fortnight (picked up at the Paralympics I think, as Dad was suffering with it more than me) and it was the bad time of my chemo cycle for side effects, so I spent a lot of time resting / sleeping. It was really lovely to be with Mum and Granny though and hopefully next time I'll be more value for money!
As I mentioned, I have been suffering from a cold this last fortnight. Now this is not pleasant at the best of times, but the risk factor ups a couple of notches when you are on chemo. One of the things that chemo does is knock your immune system and so a cold could develop into something more sinister! Eek! Anyway, thankfully my white blood cell count was fairly normal and so for me, this is just behaving like a normal cold. It's annoying, but thankfully nothing worse and I'm keeping Kleenex and Olbas in business!
OK, now onto the cancer bit of this update (feel free to sign off and go and get a cup of tea now). Well, having had the cock ups with the first cycle of this round of chemo, I was hoping that we would be into smooth sailing mode, but someone somewhere had other ideas. The first clue was when a letter arrived from the hospital to say that my clinic appointment was being delayed three weeks! Now, I have to see one of the doctors in the clinic before each chemo appointment so that they can check I am coping OK with the treatment and they then prescribe the chemo drugs. This meant that a three week delay in the clinic appointment would lead to a three week delay in treatment! Not good! I got straight on the phone to find out what was going on and thankfully my MacMillan CNS (Clinical Nurse Specialist) sorted it so that I could see someone in clinic on the originally planned day. We never did find out who decided that there should be a three week delay - someone in admin probably! Anyway, the doctor was seen and chemo was duly administered on schedule - this time with all the drugs that I was supposed to get (no one knows why there was the prescription cock up with the first cycle). Anyway, since then I have been enjoying the side effects of chemo that seem to have got a little bit more pronounced quicker than they have in the past - I guess having a cold hasn't helped. I won't give you too many details, but I'll just say that the immodium has been put to the test and I've not been able to venture too far from a bathroom on more days than I would have liked! :-( Sorry if that is too much info! Anyway, (I say that a lot, don't I?!) we are now half way through the planned chemo and I am due to have my forth and (hopefully) final condom bottle disconnected on October 10th, which will be 23 months to the day since they first found the tumour! What an adventure it has been!! Fingers crossed that'll be me done with chemo for good! However, today in clinic, there was a curve ball thrown! Grrr! I saw a different consultant to my normal one today and he seemed to suggest that I may have to continue having the mouse drug fortnightly for another six months!!!! What!?? Sarah and I tried to find out more about this, and the doctor suggested that a maintenance regime would continue with that one drug! Technically it is a biological anti-body treatment rather than chemotherapy, but it would still tie me down to going to the hospital every week! Obviously, if this is considered the best option for me to make sure that I beat the cancer, then I will take the treatment, it just all came a bit out of the blue and it has never been mentioned before. It knocked us for 6 to say the least. I have been psyching myself up for treatment to all be done with in less than three weeks, but to hear that it could carry on until March is another matter entirely! Oh well! I have left a message with my CNS (she gets lots of calls from me) this afternoon to ask her to find out from my normal consultant what the game plan is. Hopefully she'll get back to me early next week with some answers. Until then, all plans are on hold again! Grrr!
Well, I think that about covers everything that's going on at the moment! I'm going to enjoy my weekend and then it is back to the chemo grindstone on Monday with at least 6 hours in the comfy chair and drips attached! Fun fun fun!
Have a good one everyone and thanks for reading (hope I haven't bored you!)
xxxx
Friday, 31 August 2012
Cake and chemo - the rematch!
You'll all be pleased to hear that yesterday was a much less disastrous day than Tuesday seemed to be! The only thing that tried to put a dampener on things was my persistent headache that ibuprofen and paracetamol couldn't shift! It turns out that when you are given cetuximab on its own it can cause a headache! Although I did have a dose of cetuximab on its own back in May, it's likely that there would still have been some of my other chemo drugs in my system, so no headache then. Anyway, with getting the oxyplatin and the 5FU yesterday afternoon the headache has just about gone! Yay!
Thankfully, all went straight forwardly at the hospital yesterday afternoon and I am now all hooked up to condom bottle number 7 of 10! I have it connected until tomorrow afternoon and have quickly gotten used to it hanging around again!! Thankfully, so far the side affects from the chemo have been minimal - at the moment I can drink room temperature drinks and don't have to clean my teeth in warm water. I'm taking my anti nausea meds as I hate feeling sick - thankfully not felt that way yet! I did get a quite numb right ear when I went out for a walk with mum this evening though - funny how it's always been my right ear that is affected first!! Hummm
Anyway, as I mentioned, mum is here now. It's been shift change day with sis having to go back home so she can go to work tomorrow. Dad bought mum up this afternoon and then took my car back to their house so that he can get it MOT'd tomorrow! Mum and I are then heading back for the weekend after I'm done at the hospital tomorrow afternoon. Thanks so much to you all, sis, mum and dad, for all the too-ing and fro-ing you are doing for me!!
Speaking of sis, the poor thing had to spend her birthday coming to chemo with me rather than meet up with her friends. Thanks again Sarah! To make it up to her I let her choose the take away for dinner!! Pizza was consumed!! Then it was cake time!! I had made her a New York style baked cheesecake from the original cheesecake recipe in the Junior's cookbook. Junior's is a chain of cheesecake restaurants in New York City that Sarah and I fell in love with when we were there for my 30th! This recipe calls for nearly 1kg of full fat Philadelphia cheese, among other naughty things!!! Well, thankfully even after my disasters whilst making it, it tasted good in the end!! We haven't quite finished it!! ;-)
Today, whilst supervising shift change I've been enjoying watching the Paralympics - truly inspirational!! I really loved the opening ceremony last night, especially seeing all the colourful outfits worn by the competitors - mexico certainly won that one!! I'm looking forward to vegging out and watching the games, and then I can plan my next mini adventure gold postbox tour!! Go Paralympic GB!!
Anyway, just to finish off with, here's a photo of the cake!
Night all
Thankfully, all went straight forwardly at the hospital yesterday afternoon and I am now all hooked up to condom bottle number 7 of 10! I have it connected until tomorrow afternoon and have quickly gotten used to it hanging around again!! Thankfully, so far the side affects from the chemo have been minimal - at the moment I can drink room temperature drinks and don't have to clean my teeth in warm water. I'm taking my anti nausea meds as I hate feeling sick - thankfully not felt that way yet! I did get a quite numb right ear when I went out for a walk with mum this evening though - funny how it's always been my right ear that is affected first!! Hummm
Anyway, as I mentioned, mum is here now. It's been shift change day with sis having to go back home so she can go to work tomorrow. Dad bought mum up this afternoon and then took my car back to their house so that he can get it MOT'd tomorrow! Mum and I are then heading back for the weekend after I'm done at the hospital tomorrow afternoon. Thanks so much to you all, sis, mum and dad, for all the too-ing and fro-ing you are doing for me!!
Speaking of sis, the poor thing had to spend her birthday coming to chemo with me rather than meet up with her friends. Thanks again Sarah! To make it up to her I let her choose the take away for dinner!! Pizza was consumed!! Then it was cake time!! I had made her a New York style baked cheesecake from the original cheesecake recipe in the Junior's cookbook. Junior's is a chain of cheesecake restaurants in New York City that Sarah and I fell in love with when we were there for my 30th! This recipe calls for nearly 1kg of full fat Philadelphia cheese, among other naughty things!!! Well, thankfully even after my disasters whilst making it, it tasted good in the end!! We haven't quite finished it!! ;-)
Today, whilst supervising shift change I've been enjoying watching the Paralympics - truly inspirational!! I really loved the opening ceremony last night, especially seeing all the colourful outfits worn by the competitors - mexico certainly won that one!! I'm looking forward to vegging out and watching the games, and then I can plan my next mini adventure gold postbox tour!! Go Paralympic GB!!
Anyway, just to finish off with, here's a photo of the cake!
Night all
Tuesday, 28 August 2012
Cake and chemo - not quite according to plan!
I had two things to do today - make a baked New York style cheesecake ready for my sister's birthday tomorrow and go to the hospital to have my first cycle of chemo. Well, like all my best laid plans, neither of these things went quite to script!! Grrr
Cheesecake first ... The recipe told me to make the sponge base, cook it and then let it cool before adding the cheesy topping. Well I cooked it for the time it said and left it to cool. However, when I started to spoon the cheesy topping on it just sank through the sponge - oops! Anyway, I put the base back in the oven to cook a bit longer and then obviously had to let it cool again. On the second attempt, the cheesy topping sank a little bit into the sponge again but I had to carry on as it needed to bake again for over an hour and I only had that time before I had to leave for the hospital!!! I suspect we may have a marble effect with the sponge and cheese all mixed up when we come to cut it and eat it!! I just hope it tastes ok!!!
Well, onto the chemo saga!! My sis and I arrived on the chemo ward to be told I needed to go for a chest X-ray as the PICC wasn't in the right place!!! I explained that I had been through all this already and had another PICC put in correctly (see earlier post). Anyway, the nurses explained that they couldn't give me any chemo unless I had another X-ray today and the doctor signed off on it! So off to X-ray I went again! The receptionist was surprised to see me again, after all this was to be my 4th X-ray in a week!! Well, after a bit of a wait and then the X-ray, I went back up to the chemo unit. Obviously the X-ray showed all was fine because after about 45 minutes I was hooked up to my cetuximab (the mouse drug). Now, this is when the first hints of something not being quite right showed themselves. Normally, the three drugs I am on (cetuximab, oxyplatin and 5FU, aka the condom bottle) all get sent up from pharmacy at the same time and then stored in the fridge on the ward until I'm ready to have them - they go on one at a time which is why a chemo session takes a minimum of 5 and a half hours. Anyway, sometimes if the pharmacy hasn't quite finished making up the drugs, they just send up the first one, with the others following. This is what appeared to have happened today. However, when the nurse called the pharmacy to check, she was told that only the cetuximab had been prescribed!! Hummm. It turns out that my consultant had the day off today so they couldn't check with her. The next step was to get my notes from the file room and check them. Alas, all my consultant had written in there was that chemo was to start today and she didn't specify which drugs!! Ok, so next I spoke to the oncology registrar on duty and told her that my consultant had suggested to me when I saw her on clinic a couple of weeks ago that I was to have all the same drugs as earlier this year. Thankfully the registrar thought this was most likely so off she went to prescribe the oxyplatin and 5FU. However, it was approaching 6pm by this time and the day unit was winding down for the day and it was going to take at least 2 hours for pharmacy to make up the drugs!! As a result we came home - the cetuximab infusion had finished by this point. I have to go back tomorrow to have the other drugs. It wouldn't really be a problem but I'd stupidly booked my car in for an MOT on Friday morning back near my parents house 100 miles away!! This has to be rethought as I will now have to go back to the hospital on Friday to get my condom bottle disconnected!! How stupid of me to make plans whilst I'm on chemo!! Doh!!
Anyway, here's hoping tomorrow will be a better day, especially as it's Sarah's birthday!!
Night all
Xxx
Cheesecake first ... The recipe told me to make the sponge base, cook it and then let it cool before adding the cheesy topping. Well I cooked it for the time it said and left it to cool. However, when I started to spoon the cheesy topping on it just sank through the sponge - oops! Anyway, I put the base back in the oven to cook a bit longer and then obviously had to let it cool again. On the second attempt, the cheesy topping sank a little bit into the sponge again but I had to carry on as it needed to bake again for over an hour and I only had that time before I had to leave for the hospital!!! I suspect we may have a marble effect with the sponge and cheese all mixed up when we come to cut it and eat it!! I just hope it tastes ok!!!
Well, onto the chemo saga!! My sis and I arrived on the chemo ward to be told I needed to go for a chest X-ray as the PICC wasn't in the right place!!! I explained that I had been through all this already and had another PICC put in correctly (see earlier post). Anyway, the nurses explained that they couldn't give me any chemo unless I had another X-ray today and the doctor signed off on it! So off to X-ray I went again! The receptionist was surprised to see me again, after all this was to be my 4th X-ray in a week!! Well, after a bit of a wait and then the X-ray, I went back up to the chemo unit. Obviously the X-ray showed all was fine because after about 45 minutes I was hooked up to my cetuximab (the mouse drug). Now, this is when the first hints of something not being quite right showed themselves. Normally, the three drugs I am on (cetuximab, oxyplatin and 5FU, aka the condom bottle) all get sent up from pharmacy at the same time and then stored in the fridge on the ward until I'm ready to have them - they go on one at a time which is why a chemo session takes a minimum of 5 and a half hours. Anyway, sometimes if the pharmacy hasn't quite finished making up the drugs, they just send up the first one, with the others following. This is what appeared to have happened today. However, when the nurse called the pharmacy to check, she was told that only the cetuximab had been prescribed!! Hummm. It turns out that my consultant had the day off today so they couldn't check with her. The next step was to get my notes from the file room and check them. Alas, all my consultant had written in there was that chemo was to start today and she didn't specify which drugs!! Ok, so next I spoke to the oncology registrar on duty and told her that my consultant had suggested to me when I saw her on clinic a couple of weeks ago that I was to have all the same drugs as earlier this year. Thankfully the registrar thought this was most likely so off she went to prescribe the oxyplatin and 5FU. However, it was approaching 6pm by this time and the day unit was winding down for the day and it was going to take at least 2 hours for pharmacy to make up the drugs!! As a result we came home - the cetuximab infusion had finished by this point. I have to go back tomorrow to have the other drugs. It wouldn't really be a problem but I'd stupidly booked my car in for an MOT on Friday morning back near my parents house 100 miles away!! This has to be rethought as I will now have to go back to the hospital on Friday to get my condom bottle disconnected!! How stupid of me to make plans whilst I'm on chemo!! Doh!!
Anyway, here's hoping tomorrow will be a better day, especially as it's Sarah's birthday!!
Night all
Xxx
Monday, 27 August 2012
My mini adventure
Today I have been on a mini adventure - alas it wasn't in a Mini (car) but via the delights of London buses and trains (does anyone else remember those adverts for Mini's - the Mini Adventures??). Anyway, I decided that I wanted to do something fun on my last day before chemo starts again tomorrow. I found a website that shows where all the gold postboxes are in the country (www.goldpostboxes.com) and it turns out that there are (currently) 6 in south-west London. Hopefully the Paralympians will do well in the coming couple of weeks and add more. Well, with the locations pinpointed I then planned my day using the trusty TfL Journey Planner. I decided to start with Pete Reed's postbox outside Chiswick Town Hall. I jumped on the train to Chiswick and then the E3 bus. I was planning to walk from the station to the town hall but as I got off the train, the heavens opened. Now of course I should have known this was going to happen, but I'd somehow missed this part of the forecast and left my umbrella at home, so off on the bus I went!! Here's Pete's postbox:
Then came the climb up the hill to Wimbledon village and then back down the other side of the hill to the All England Club. It was during this trek that I discovered that the blisters I got yesterday (from trainers I have had for years!) were not as well protected as I had hoped by the blister plasters - ouch!!! Anyway, I was very grateful when I found Andy Murray's gold postbox outside the All England Club. Here it is:
Now, with my blisters, my plan was to get the bus back to Wimbledon station and then the train down to Cheam for the last postbox of the day. However, the bustracker app on my phone told me that the next bus was in 25 minutes! I'm not really one for waiting around so decided that the feet could hold up to walking back up the hill to Wimbledon village where I hoped that there would be more bus options. Typically, as I got about 20m back up the road the bus that I was told was 25 minutes away went past!! Oh well! Once back in Wimbledon village I caught the number 93 bus. When I saw that the destination of the bus was North Cheam I decided to stay on the bus through to there rather than get off at Wimbledon station and get the train. Once I got to the end of the bus route, I walked down to Cheam and found my final postbox - that commemorating Joanna Rowsell's win in the team pursuit. Here it is:
After taking this snap, it was time to walk to Cheam station and catch the train home!! So, after 5 and a half hours, 3 buses and 5 trains I had visited the 6 gold postboxes on my mini adventure! I had also seem many parts of London that I've not been to before. Oh, did I mention that having bought that umbrella by Chiswick Town Hall, it had stopped raining by the time I got to Isleworth and remained dry for the rest of the day!! Typical! Never mind. I am now the proud owner of another black folding umbrella which will no doubt end up being left on a bus or train or in a pub somewhere in the future!!
I am now resting my poor feet before enjoying my final ice cream for a couple of months - cold sensitivity comes back tomorrow afternoon with my oxyplatin infusion. And then I have to also prepare for a certain sister's birthday on Wednesdy!! (I don't think she reads my blog - gets enough of me without it - but I'll leave out any birthday info until afterwards just in case).
Oh, check out these fun prints http://www.stuartsoriginals.com/cities.html I saw the London - Sporting City and London - World City prints in a gallery window in Wimbledon and thought they were great! (can I find somewhere to hang one, let alone justify buying one!!?? Hummmm)
Anyway, bye for now folks! No doubt the next post will be back about the joys of chemo!!
Take care
xxxxx
So, having found the postbox I bought an umbrella and went to catch the bus (the 237) to my next destination - Isleworth. Just up the road from Isleworth station I found the first of Mo Farah's gold postboxes, to commemorate his 10,000m gold medal. Here it is:
My next visit was to Mo's other postbox, commemorating his 5,000m win. This one was located in Teddington, so I caught the train down from Isleworth, via Twickenham. Here's Mo's second gold postbox:
OK, so I was now half way through my list of postboxes. The next destination was Wimbledon, where two postboxes could be found, so it was back on the train. Just up the road from the station was Sophie Hosking's gold postbox:
Now, with my blisters, my plan was to get the bus back to Wimbledon station and then the train down to Cheam for the last postbox of the day. However, the bustracker app on my phone told me that the next bus was in 25 minutes! I'm not really one for waiting around so decided that the feet could hold up to walking back up the hill to Wimbledon village where I hoped that there would be more bus options. Typically, as I got about 20m back up the road the bus that I was told was 25 minutes away went past!! Oh well! Once back in Wimbledon village I caught the number 93 bus. When I saw that the destination of the bus was North Cheam I decided to stay on the bus through to there rather than get off at Wimbledon station and get the train. Once I got to the end of the bus route, I walked down to Cheam and found my final postbox - that commemorating Joanna Rowsell's win in the team pursuit. Here it is:
After taking this snap, it was time to walk to Cheam station and catch the train home!! So, after 5 and a half hours, 3 buses and 5 trains I had visited the 6 gold postboxes on my mini adventure! I had also seem many parts of London that I've not been to before. Oh, did I mention that having bought that umbrella by Chiswick Town Hall, it had stopped raining by the time I got to Isleworth and remained dry for the rest of the day!! Typical! Never mind. I am now the proud owner of another black folding umbrella which will no doubt end up being left on a bus or train or in a pub somewhere in the future!!
I am now resting my poor feet before enjoying my final ice cream for a couple of months - cold sensitivity comes back tomorrow afternoon with my oxyplatin infusion. And then I have to also prepare for a certain sister's birthday on Wednesdy!! (I don't think she reads my blog - gets enough of me without it - but I'll leave out any birthday info until afterwards just in case).
Oh, check out these fun prints http://www.stuartsoriginals.com/cities.html I saw the London - Sporting City and London - World City prints in a gallery window in Wimbledon and thought they were great! (can I find somewhere to hang one, let alone justify buying one!!?? Hummmm)
Anyway, bye for now folks! No doubt the next post will be back about the joys of chemo!!
Take care
xxxxx
Saturday, 25 August 2012
Oh cripes!
I've just had a glass candle explode! (obviously the candle was made of wax but it was one of those that is in a glass, if you know what I mean). Typically, it exploded in the lounge between me and the cupboard where the vacuum is kept and I had bare feet!! (rolls eyes). Anyway, I picked my way across and I think I've hoovered all the little bits up. At least it was one of my cheap ikea candles and not one of my nice ones - maybe there's a tip in there - watch out for cheap Swedish candles!!
Anyway, apart from that excitement, I've had a really lovely day, and no sis that's not because you went home! ;-) hahaha! No, it's because I met up with my great friend Janey, her husband and little boy. Thanks so much guys for meeting me and for my tea and cookie! It was really lovely to see you, and to have a cuddle with Oscar (that's her son not her husband!)
I've just watched Faster, one of my Love Film films. Didn't really enjoy it as its not my usual cup of tea. I'm not really sure how it ended up on my list. Didn't even have a fit actor in it! ;-)
It's sad to hear that Neil Armstrong has died. Although I wasn't born when he took his famous small step, I have always been fascinated by space travel - as a kid I remember wanting to be an astronaut! Space Camp will always have a special place in my 80s film loving heart! I can still sit through Apollo 13 and The Dish over and over again without getting bored! This evening I've read this quote from Neil Armstrong a few times and I think it sums things up for me on my current adventure:
"I believe that every human has a finite number of heartbeats. I don't intend to waste any of mine"
RIP Neil Armstrong
Xxxx
Anyway, apart from that excitement, I've had a really lovely day, and no sis that's not because you went home! ;-) hahaha! No, it's because I met up with my great friend Janey, her husband and little boy. Thanks so much guys for meeting me and for my tea and cookie! It was really lovely to see you, and to have a cuddle with Oscar (that's her son not her husband!)
I've just watched Faster, one of my Love Film films. Didn't really enjoy it as its not my usual cup of tea. I'm not really sure how it ended up on my list. Didn't even have a fit actor in it! ;-)
It's sad to hear that Neil Armstrong has died. Although I wasn't born when he took his famous small step, I have always been fascinated by space travel - as a kid I remember wanting to be an astronaut! Space Camp will always have a special place in my 80s film loving heart! I can still sit through Apollo 13 and The Dish over and over again without getting bored! This evening I've read this quote from Neil Armstrong a few times and I think it sums things up for me on my current adventure:
"I believe that every human has a finite number of heartbeats. I don't intend to waste any of mine"
RIP Neil Armstrong
Xxxx
Friday, 24 August 2012
Pre-chemo jobs done
Well, I think they are all done anyway! I've been to have a dental checkup - all fine. I've made sure I'm stocked up on all the lotions and potions I need that the hospital does not provide, eg super strength moisturiser and gentle shampoo (thanks Lucy!) and this morning I went to get my hair cut and coloured. With the drug combo I'm on for chemo my hair thins but I'm lucky that I've always had a lot of hair and so ive never had any bold patches. My eye lashes fell out a few weeks after chemo finished last time tho - saved a few £ on mascara for a while there!! With my hair, unfortunately the grey hairs always remained stubborn and only the grey ones fell out! Typical!! Anyway, with only having (hopefully) 8 weeks of treatment I am hoping that having had my hair coloured this morning I'm hoping that not too much grey will show through before I can get it coloured again in October after treatment! We'll see!!!
Yesterday I met my friend Lucy for a bite to eat - we went to the newly opens Whole Foods Market just off Piccadilly. It was great to have a mooch around and the food was yummy! I would have loved to have stocked up with lots of lovely organic products if the ££ and arm strength (to carry it all) would allow!! I was surprised to see that some of the fresh fruit was grown in the USA! Surely the transportation costs and logistics would make it more feasible to source produce from the UK?! Anyway, still a great shop to mooch around.
Have a fun weekend everyone! Don't forget the waterproofs!!
Xxx
Yesterday I met my friend Lucy for a bite to eat - we went to the newly opens Whole Foods Market just off Piccadilly. It was great to have a mooch around and the food was yummy! I would have loved to have stocked up with lots of lovely organic products if the ££ and arm strength (to carry it all) would allow!! I was surprised to see that some of the fresh fruit was grown in the USA! Surely the transportation costs and logistics would make it more feasible to source produce from the UK?! Anyway, still a great shop to mooch around.
Have a fun weekend everyone! Don't forget the waterproofs!!
Xxx
Wednesday, 22 August 2012
Be gone curse!
Well another afternoon was spent at the hospital today! It turned out from X-ray number 1 that the end of my PICC line hadn't flipped down into the correct position overnight. This meant another trip to venous access - why is it at the other end of the hospital to the X-ray department!!??!! Anyway, we got there to be told that there would be an hour wait. Mum and I then decided to go and get a drink from the cafe and sit outside rather than remain in the waiting room. (Yes, we'd decided to risk just mum coming with me again - curse be damned!!) On returning to venous access, I was taken through. The original plan was to insert a guide wire through the line they'd put in yesterday and then remove the line and thread another line through over the guide wire and hopefully into the correct position. Well, best laid plans and all that - the nurse practitioner pulled the PICC line out too far to be able to put a guide wire through - she was only meant to retract it a few cm but got carried away and pulled out 36cm of the 40cm they'd put in and as my veins were so deep it had popped out of the vein (they could tell this when they inserted the guide wire and it made me cry out in pain - it's not meant to hurt!). Anyway, the next plan was to start again from the beginning. Oh well!! Luckily the nurses took pity on me and let me have some cold spray on my arm to numb my arm before they injected the stingy local anaesthetic, normally reserved for the children!! :-) it worked a treat, although i'm not sure it would be very pleasant if I was cold sensitive from oxyplatin! Well, the second line went in ok and this time they used ultra-sound on both sides of my neck to check that the line hadn't gone astray again! Apparently, they hadn't seen in years what happened yesterday! I must be special!! Hahaha
Well, although the nurses in venous access were confident that the line was in the right place, off to X-ray we went again to check! We certainly clocked up the steps today. Another gown was put on and X-ray number 2 of the day was done! This time the radiographer thought the line was in the right place but he wasn't confident enough to let me go home without me being seen by venous access again!! High Ho high Ho it was off back across the hospital again!! Grrr! By the time we'd got back the nurse had looked at the X-ray image and thought all was fine so I could go home!! At last!! Although it was a bit of a faff having to go back again today, Maria, the nurse practitioner who supervised yesterday and today, was great - keeping me distracted with chatting about all sorts of random things, from why the weather is so changeable here compared with her home in the Philippines to how to curl your eyelashes with a pen!! It was great! :-)
Anyway, hopefully that'll be it for hospital visits until Tuesday - chemo day!! Now I'm going to enjoy my free days with my friend, the PICC, back in my arm. Pity the weather looks like sticking with the rules of a British bank holiday - don't forget your brollies if you're heading out and about!! ;-)
Take care y'all!
Xxxx
Well, although the nurses in venous access were confident that the line was in the right place, off to X-ray we went again to check! We certainly clocked up the steps today. Another gown was put on and X-ray number 2 of the day was done! This time the radiographer thought the line was in the right place but he wasn't confident enough to let me go home without me being seen by venous access again!! High Ho high Ho it was off back across the hospital again!! Grrr! By the time we'd got back the nurse had looked at the X-ray image and thought all was fine so I could go home!! At last!! Although it was a bit of a faff having to go back again today, Maria, the nurse practitioner who supervised yesterday and today, was great - keeping me distracted with chatting about all sorts of random things, from why the weather is so changeable here compared with her home in the Philippines to how to curl your eyelashes with a pen!! It was great! :-)
Anyway, hopefully that'll be it for hospital visits until Tuesday - chemo day!! Now I'm going to enjoy my free days with my friend, the PICC, back in my arm. Pity the weather looks like sticking with the rules of a British bank holiday - don't forget your brollies if you're heading out and about!! ;-)
Take care y'all!
Xxxx
Tuesday, 21 August 2012
The curse strikes again
I really should know by now not to go to hospital with just mum - something always goes wrong! Well, today we went to get my PICC line put in ready for chemo next Tuesday. Anyway, all seemed to go fine as far as I could tell and I didn't feint!! I had the chest X-ray to check that the line was in the right place but unfortunately it wasn't. Instead of going up my right arm, across the top of my chest and towards my heart it goes up the vein on the left hand side of my neck! Oops! Apparently in 80% of cases in active people the line will flip into the correct position thanks to gravity and movement. Hopefully this will happen with me. I am heading back to the hospital tomorrow to have another chest X-ray to check it has. If not, I'll have to either have the current line fiddled with to get it in the right place or have another line in put in. Fun fun fun!! Oh well, it's better to have a PICC line in rather than have to have needles every time I have chemo and blood tests!
In other news, I had a lovely day on Saturday. It started with meeting my friend from uni, Anne-Marie, for lunch and an afternoon relaxing in St. James' Park. Thank you so much for coming up to London to see me! I'm so lucky that my friends are willing to come to see me, with Anne-Marie this week and Sarah coming from Plymouth a few weeks ago.
On Saturday evening I met with friends in Richmond to celebrate Sam's 30th birthday with a surprise party! We were thankful to be able to escape from the heat of the pub onto the Green which had turned into a big, communal beer garden for the surrounding pubs!! We did manage to have cake in the pub though, although the cake had melted to about half it's height!! Hahaha! Two of the balloons that we'd blown up popped in the heat as well!! The other advantage to sitting on the Green was that we could have a chip supper from the chippy down the street!! :-)
Last night I met some of my friends from work after their training day for a good catch up over a few (soft) drinks in the new beer garden that one of the local pubs had opened. It was great to see them and hopefully I'll see them again soon.
One final mention must be to baby Callan George - welcome to the world! Congratulations to Nikki, Ian and Ewan on the new edition to your family!! I'm looking forward to coming for a cuddle soon!
Signing off for now!
Xxxx
In other news, I had a lovely day on Saturday. It started with meeting my friend from uni, Anne-Marie, for lunch and an afternoon relaxing in St. James' Park. Thank you so much for coming up to London to see me! I'm so lucky that my friends are willing to come to see me, with Anne-Marie this week and Sarah coming from Plymouth a few weeks ago.
On Saturday evening I met with friends in Richmond to celebrate Sam's 30th birthday with a surprise party! We were thankful to be able to escape from the heat of the pub onto the Green which had turned into a big, communal beer garden for the surrounding pubs!! We did manage to have cake in the pub though, although the cake had melted to about half it's height!! Hahaha! Two of the balloons that we'd blown up popped in the heat as well!! The other advantage to sitting on the Green was that we could have a chip supper from the chippy down the street!! :-)
Last night I met some of my friends from work after their training day for a good catch up over a few (soft) drinks in the new beer garden that one of the local pubs had opened. It was great to see them and hopefully I'll see them again soon.
One final mention must be to baby Callan George - welcome to the world! Congratulations to Nikki, Ian and Ewan on the new edition to your family!! I'm looking forward to coming for a cuddle soon!
Signing off for now!
Xxxx
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