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
Sunday, 2 December 2012
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
Subscribe to:
Posts (Atom)