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
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