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
Tuesday, 25 September 2012
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
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