This is just a quick update about chemo and treatment generally.
My FB and twitter followers will be aware that round 4 was really quite rough. I started vomiting while the oxaliplatin was being infused and managed to fill 4 bowls (thats about 4 litres) and kept vomiting like the other three times.
What was different this time was despite taking all the anti nausea medication, the nausea did not go away. I have felt like death warmed up for the last two weeks. I was sick a couple of times as well. Proper gut wrenching vomit, which gave me back spasms and left me in an immense amount of pain as well as wondering what the hell was going on.
It got to the point where I was dreading yesterday as I didn't think I could put my body through another two cycles.
To cut to the point. I didn't have too. I still spent the same amount of time at St Lukes yesterday, but I was deemed to ill to have another bout of chemo and so yet again it comes to an end before the natural conclusion.
We are off to Somerset shortly and I will update further on why I was not able to have chemo yesterday.
About this Blog
This blog started as an online diary and place for me to rant about annoyances in my family.
However since July it has become a place for me to catalogue and express my views and opinions on the treatment I have recieved following the diagnosis of a potentially cancerous tumor in my bowel.
On 3rd August 2011 I was told that it was cancerous. In April 2012 I was given the all clear.
October 15th 2013 I was diagnosed with peritoneal disease and liver metastases. The cancer was back and this time it is inoperable.
It is a little bit out of date as the NHS doesn't tend to have a WiFi connection in hospital and I can only post when I get home and posts take a while to write.
It is NOT about individuals or the nursing profession. It is about some of the inadequacies in the system and the way the NHS is failing some people.
For more inane ramblings, follow me on twitter
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Showing posts with label oxaliplatin. Show all posts
Showing posts with label oxaliplatin. Show all posts
Thursday, 10 April 2014
Thursday, 13 March 2014
Peripheral Neurophathy
Take a think about what you have done so far today. Even those unconscious things that you just do without thinking and take for granted and then I'll tell you how my evening and morning have been.
When I had chemo first time round (back in 2011) I had to have a stronger dose of Oxaliplatin as I was having it every three weeks not every 2. This meant that the side effects kicked in quicker. The breeze over my face or in my throat was enough for it to start seizing up and becoming painful. There were times I was wheezing as I walked out of the hospital.
The poxy oxi is not so strong this time but last night the dreaded neuropathy kicked in. Alongside the vomiting this is just enough.
So even walking to the car my face is going numb, holding my handbag is uncomfortable because it is cold. I struggle to text Tony because the screen is to cold.
Driving home we need the window open because I need fresh air when I am vomiting every 20 minutes. But this again makes my face feel really uncomfortable and sore because of the breeze.
Walking from the car to the house is just as bad and it is getting worse now, which is what I as expecting. The pain and tingling is horrid.
I go upstairs to go to the loo, the toilet seat is cold so I loose some sensation in my fingers lifting it and then loose sensation somewhere else while I am sitting on it.
I need to take my painkillers, but need to run the hot tap first to get tepid water so I don't loose any sensation in my throat. But in order to do that I need to check the temperature so it is not too hot that I can't swallow it. Catch 22, fingers are numb, but throat is not. I decide to take some oromorph as my pain levels are quite high, but this is cold to swallow and causes some choking as I can't swallow it correctly.
Even the duvet and pillows being cold causes me problems and tingling.
Fast forward to this morning, I have had to find a pair of gloves to be able to take milk, butter and fruit juice out of the fridge to feed the children breakfast. Even bread which has been on the side all night gave my fingers a tingle. I had to run the tap again to get tepid water to make squash for me to drink and take my tablets as stuff that has been on the kitchen side all night is to cold.
I am dreading changing Hope's nappy as I know that using a wet wipe will be agony, based on the fact that I used a face wipe on my face last night as part of my routine and didn't think about what I as doing.
Peripheral Neuropathy - Making life difficult for cancer patients
When I had chemo first time round (back in 2011) I had to have a stronger dose of Oxaliplatin as I was having it every three weeks not every 2. This meant that the side effects kicked in quicker. The breeze over my face or in my throat was enough for it to start seizing up and becoming painful. There were times I was wheezing as I walked out of the hospital.
The poxy oxi is not so strong this time but last night the dreaded neuropathy kicked in. Alongside the vomiting this is just enough.
So even walking to the car my face is going numb, holding my handbag is uncomfortable because it is cold. I struggle to text Tony because the screen is to cold.
Driving home we need the window open because I need fresh air when I am vomiting every 20 minutes. But this again makes my face feel really uncomfortable and sore because of the breeze.
Walking from the car to the house is just as bad and it is getting worse now, which is what I as expecting. The pain and tingling is horrid.
I go upstairs to go to the loo, the toilet seat is cold so I loose some sensation in my fingers lifting it and then loose sensation somewhere else while I am sitting on it.
I need to take my painkillers, but need to run the hot tap first to get tepid water so I don't loose any sensation in my throat. But in order to do that I need to check the temperature so it is not too hot that I can't swallow it. Catch 22, fingers are numb, but throat is not. I decide to take some oromorph as my pain levels are quite high, but this is cold to swallow and causes some choking as I can't swallow it correctly.
Even the duvet and pillows being cold causes me problems and tingling.
Fast forward to this morning, I have had to find a pair of gloves to be able to take milk, butter and fruit juice out of the fridge to feed the children breakfast. Even bread which has been on the side all night gave my fingers a tingle. I had to run the tap again to get tepid water to make squash for me to drink and take my tablets as stuff that has been on the kitchen side all night is to cold.
I am dreading changing Hope's nappy as I know that using a wet wipe will be agony, based on the fact that I used a face wipe on my face last night as part of my routine and didn't think about what I as doing.
Peripheral Neuropathy - Making life difficult for cancer patients
Wednesday, 5 February 2014
Today's news
Well, the headlines.
The tumour hasn't grown, but equally it hasn't shrunk which seems to suggest that it hasn't responded to the current chemotherapy regime of Irinotecan, 5FU and Avastin.
This means that I need more aggressive and evil chemotherapy. This means more oxaliplatin and 5FU.
You may remember oxaliplatin or poxy oxy as it is known amongst the bowel cancer patients. It is the one that cause peripheral neuropathy, you know, the tingling in the fingers & toes and numbness in the cold.
I cannot wait, luckily I don't have too. Dr Cummins wants this to start on Monday! yep like after the weekend!!
I will be having this fortnightly so at a slightly lower concentration than I had previously, and I'll have 6 initial sessions, then another scan to see what the progress is.
Hopefully the removal of the Irinotecan and Avastin will curtail the bleeding and so that will alleviate some of my worries.
Don't be under any illusions though. I am still very ill. If this lot of chemotherapy does not work, we have to start looking into alternatives, radiotherapy, trial therapies, anything to try and target this awful disease.
In the meantime I read about an app you can download to help scientists try and find a cure for breast cancer. So if you or your significant goer, or anybody else you know is a gamer, visit
http://www.cancerresearchuk.org/support-us/play-to-cure-genes-in-space
and download the app. It's free, and helps fight cancer.
Monday, 28 October 2013
Chemo round one
I realise that this is a few days late and I actually had chemo last Thursday.
But we will go back one more day to Wednesday when I left mum with all three children and headed to Guildford to have my PICC line put back in. While having the line in I was chatting with the nurse about how demoralising I had found chemotherapy before and I was worried this time because I would be bringing Hope and found it really uncomfortable to sit on the ward with the more mature people who were giving you their life stories, which I don't care about. I have enough going on in my life without hearing about how you have had chemotherapy for 3 or 4 different types of cancer, or about how your cancer keeps coming back quicker and quicker. I don't want to face up to the fact that in 30 years time I might still be going back and forward to St Luke's to have yet another round of chemo. I need to keep the faith that this will be the last time I have chemo.
Judith the PICC nurse, listened and when I came back from having the X-ray to check the line was in the right place she introduced me to Claire, who is a Macmillan liaison nurse who listened and completely understood where I was coming from and came up with loads of solutions. These solutions made Thursday ( and going forward Wednesdays) much more approachable and hopefully bearable.
The unit where I have chemo has a 'treatment' room which has a bed and private bathroom ( essential for someone with my unpredictable bowel habits). Last Thursday we arrived at the unit and were able to use this room for my treatment.
This made things a lot easier and less stressful. Hope did not want to settle for a sleep and if I had been in the main room this would have ramped up my stress levels massively while she whinged and screamed at me. Instead I snuggled her into bed with me and rocked and cuddled her until she fell asleep.I can't offer her the ultimate comfort anymore as I am not breastfeeding (& that is a whole other post coming up soon). But I can provide a safe and secure environment where her needs are met to the best of my ability.
Back to the actual treatment. We started with a saline IV, then the irinotecan which took a couple of hours to infuse. Another lot of saline, then the folinic acid, and finally the pump of 5FU was connected.
If I hadn't had the pump, I wouldn't have known I had had chemo. I remember leaving the unit after my first dose of oxaliplatin and my face hurt, it hurt to breathe I would not have been able to drive. This time there was nothing.
Ok, not nothing, there was a little bit of nausea, but I know that the myriad of drugs can control that.
So we went home and hatched our weekend plans. I would not have got through the last couple of weeks without my mum being able to stop everything to come and get Hope to take a bottle and drop children at school, pre school and just provide general support. But our house is not big enough for her to live with us so we had to take her home.
Friday after school we loaded the car and headed home to the West Country. I had a nap in the back of the car and was very grateful to the spaciousness of the car for this pleasure.
We eventually arrived back in Somerset by 9.30 and it was a relief to everyone, we got the big 2 into bed and hoped Hope would settle down and go to sleep which she was not really happy with, so she had a little play with Grandpa.
Bright and early Saturday morning the children were up, despite a late night so we headed to Cardiff for the real reason for our visit. Tony had 2 tickets for the Rugby league World Cup opening ceremony and first two matches.
While Isaac and Tony went to the match, Imogen, Hope and I took advantage of Cardiff's shopping and came back to meet them significantly poorer!!
Tony and Isaac were supposed to watch both matches, but the late nights had caught up with them and we headed back to our hotel for some much needed r&r. Not much chance of that with a 3 year old, 5 year old and 6 month old. But eventually everyone fell asleep and I spent most of the night battling, I think, an irinotecan side effect in the form of bowel issues.
5.38am - the clocks had gone back. But the children did not agree and so they were up and we were counting down til 8am and we could go for breakfast and then head back to Somerset.
The reason I have told you all this is to illustrate the massive differences between all the chemotherapy regimes. After oxaliplatin I would not and could not have contemplated this. It didn't end there.
Back to Somerset to leave Isaac and Imogen with grandma and grandpa for a few days.
And finally back to Crawley at 11pm on Sunday night.
There are other bits, but I'll surprise you with those later!!
But we will go back one more day to Wednesday when I left mum with all three children and headed to Guildford to have my PICC line put back in. While having the line in I was chatting with the nurse about how demoralising I had found chemotherapy before and I was worried this time because I would be bringing Hope and found it really uncomfortable to sit on the ward with the more mature people who were giving you their life stories, which I don't care about. I have enough going on in my life without hearing about how you have had chemotherapy for 3 or 4 different types of cancer, or about how your cancer keeps coming back quicker and quicker. I don't want to face up to the fact that in 30 years time I might still be going back and forward to St Luke's to have yet another round of chemo. I need to keep the faith that this will be the last time I have chemo.
Judith the PICC nurse, listened and when I came back from having the X-ray to check the line was in the right place she introduced me to Claire, who is a Macmillan liaison nurse who listened and completely understood where I was coming from and came up with loads of solutions. These solutions made Thursday ( and going forward Wednesdays) much more approachable and hopefully bearable.
The unit where I have chemo has a 'treatment' room which has a bed and private bathroom ( essential for someone with my unpredictable bowel habits). Last Thursday we arrived at the unit and were able to use this room for my treatment.
This made things a lot easier and less stressful. Hope did not want to settle for a sleep and if I had been in the main room this would have ramped up my stress levels massively while she whinged and screamed at me. Instead I snuggled her into bed with me and rocked and cuddled her until she fell asleep.I can't offer her the ultimate comfort anymore as I am not breastfeeding (& that is a whole other post coming up soon). But I can provide a safe and secure environment where her needs are met to the best of my ability.
Back to the actual treatment. We started with a saline IV, then the irinotecan which took a couple of hours to infuse. Another lot of saline, then the folinic acid, and finally the pump of 5FU was connected.
If I hadn't had the pump, I wouldn't have known I had had chemo. I remember leaving the unit after my first dose of oxaliplatin and my face hurt, it hurt to breathe I would not have been able to drive. This time there was nothing.
Ok, not nothing, there was a little bit of nausea, but I know that the myriad of drugs can control that.
So we went home and hatched our weekend plans. I would not have got through the last couple of weeks without my mum being able to stop everything to come and get Hope to take a bottle and drop children at school, pre school and just provide general support. But our house is not big enough for her to live with us so we had to take her home.
Friday after school we loaded the car and headed home to the West Country. I had a nap in the back of the car and was very grateful to the spaciousness of the car for this pleasure.
We eventually arrived back in Somerset by 9.30 and it was a relief to everyone, we got the big 2 into bed and hoped Hope would settle down and go to sleep which she was not really happy with, so she had a little play with Grandpa.
Bright and early Saturday morning the children were up, despite a late night so we headed to Cardiff for the real reason for our visit. Tony had 2 tickets for the Rugby league World Cup opening ceremony and first two matches.
While Isaac and Tony went to the match, Imogen, Hope and I took advantage of Cardiff's shopping and came back to meet them significantly poorer!!
Tony and Isaac were supposed to watch both matches, but the late nights had caught up with them and we headed back to our hotel for some much needed r&r. Not much chance of that with a 3 year old, 5 year old and 6 month old. But eventually everyone fell asleep and I spent most of the night battling, I think, an irinotecan side effect in the form of bowel issues.
5.38am - the clocks had gone back. But the children did not agree and so they were up and we were counting down til 8am and we could go for breakfast and then head back to Somerset.
The reason I have told you all this is to illustrate the massive differences between all the chemotherapy regimes. After oxaliplatin I would not and could not have contemplated this. It didn't end there.
Back to Somerset to leave Isaac and Imogen with grandma and grandpa for a few days.
And finally back to Crawley at 11pm on Sunday night.
There are other bits, but I'll surprise you with those later!!
Monday, 21 October 2013
Information overload
So today was chemo information day.
Chemotherapy is a bit like pain killers. It's not one size fits all. Different cancers require different chemotherapy drug combinations and regimes.
For bowel cancer as a primary cancer there are 2 different regimes. The oxaliplatin and capceitabine that I had last time or oxaliplatin and 5FU. As you might remember the oxaliplatin completely wiped me out and I only managed 4 cycles before the peripheral neuropathy became unbearable.
I have left today's meeting feeling much more positive about the chemotherapy I will be receiving this time as the side effects all seem much more manageable.
I am going to be having irinotecan which is an infusion which will be given through my PICC line and then a 48 hour infusion of 5FU which will be deliverd through a small pump. There is also a third drug that I may be able to have called Avastin. Avastin is a monoclonal antibody and attaches to the tumour and targets specific proteins. Whether I can have this or not depends on the histology (make up) of my tumour. There is no point having it if I don't have the correct type of tumour.
One of the most well known side effects of chemotherapy is hair loss. This is something I didn't experience last time as this was not a side effect of proxy oxi & capceitabine. This is a side effect of irinotecan.
So, what am I going to do about that? I don't care about loosing my hair, I can rock a hat or a headscarf, and ultimately I want the cancer gone and loosing my hair is a tiny sacrifice too make.
But I have 3 young children who would be scared if mummy's hair suddenly started to fall out so like everything else I have told them.
So far they know that mummy has baddies back in her tummy and they can't cut them out, but mummy is going to have special medicine to shrivel them up like fruit that we leave too long in the fruit bowl.
Today I told them that the special medicine is going to make mummy's hair fall out, so to make sure that it likes nice when it falls out Auntie Jo is going to cut mummy's hair short like Isaac's. Imogen didn't say anything but I think she is scared by mummy loosing her hair. Isaac thinks it will be cool!!
So keep your eyes peeled for the all new look Ruth, coming soon to a screen near you.
Chemotherapy is a bit like pain killers. It's not one size fits all. Different cancers require different chemotherapy drug combinations and regimes.
For bowel cancer as a primary cancer there are 2 different regimes. The oxaliplatin and capceitabine that I had last time or oxaliplatin and 5FU. As you might remember the oxaliplatin completely wiped me out and I only managed 4 cycles before the peripheral neuropathy became unbearable.
I have left today's meeting feeling much more positive about the chemotherapy I will be receiving this time as the side effects all seem much more manageable.
I am going to be having irinotecan which is an infusion which will be given through my PICC line and then a 48 hour infusion of 5FU which will be deliverd through a small pump. There is also a third drug that I may be able to have called Avastin. Avastin is a monoclonal antibody and attaches to the tumour and targets specific proteins. Whether I can have this or not depends on the histology (make up) of my tumour. There is no point having it if I don't have the correct type of tumour.
One of the most well known side effects of chemotherapy is hair loss. This is something I didn't experience last time as this was not a side effect of proxy oxi & capceitabine. This is a side effect of irinotecan.
So, what am I going to do about that? I don't care about loosing my hair, I can rock a hat or a headscarf, and ultimately I want the cancer gone and loosing my hair is a tiny sacrifice too make.
But I have 3 young children who would be scared if mummy's hair suddenly started to fall out so like everything else I have told them.
So far they know that mummy has baddies back in her tummy and they can't cut them out, but mummy is going to have special medicine to shrivel them up like fruit that we leave too long in the fruit bowl.
Today I told them that the special medicine is going to make mummy's hair fall out, so to make sure that it likes nice when it falls out Auntie Jo is going to cut mummy's hair short like Isaac's. Imogen didn't say anything but I think she is scared by mummy loosing her hair. Isaac thinks it will be cool!!
So keep your eyes peeled for the all new look Ruth, coming soon to a screen near you.
Thursday, 10 January 2013
Happy New Year
Wow, didn't realise it had been so long since I last posted. So Happy New Year and all that that entails.
But anyway, growing a baby and recruiting for the preschool kind of got in the way. I have spent a lot of time with Google and it is not as all encompassing as it is supposed to be.
Lets ignore the preschool thing & talk about the baby.
This time last year (January 2012) I had had 5 maybe 6 sessions of chemo and was feeling quite positive about the fact that it was coming to an end. I was also still feeling slightly like crap and dealing with some of the milder side effects.
Now (January 2013) I have 15 weeks (give or take) until I welcome baby Hayllar number 3.
Since the moment I was diagnosed I have dreamt about this moment (well actually, since I am amazingly rubbish at being pregnant, the moment that the baby arrives). The moment that I can kick Cancers arse and prove that just because I have had cancer doesn't mean that you can't move on with your life and have new experiences.
I have been doing a lot of comparing this pregnancy with my other two. I have to say that this has been the easiest in terms of sickness & nausea. When I was pregnant with Isaac I vomited A LOT. There were incidences in petrol stations, on Christmas Day and at almost every other opportunity. I threw up almost every day from the moment I got a positive pregnancy test to the morning after I gave birth.
When I was pregnant with Imogen the vomiting started with the positive pregnancy test and there were first thing in the morning incidences, but there were also after I had dropped Isaac at the childminders by the side of the road incidents, in the loos at work throughout the day incidents. It did kind of tale off after about 30 weeks, but I still felt pretty rubbish. I can remember my last day at work, before I started maternity leave vomiting because a customers perfume was to strong.
This time (baby number 3) maybe my sickness/nausea threshold is much higher as I have only been sick about 6 or 8 times. I have felt nauseous and am still suffering from the dreaded heartburn, but have actually thrown up very little. I can't tell you why - maybe my body is more receptive to being pregnant. Maybe the combination of antidepressants that I took through my first and second pregnancies contributed to the nausea. Or maybe having suffered the never ending nausea of chemo and oxaliplatin my body has decided there are definitely worse things to vomit over.
So there you go, If you suffer from terrible morning sickness during pregnancy, have cancer, then chemo & suddenly things won't be so bad anymore.
But anyway, growing a baby and recruiting for the preschool kind of got in the way. I have spent a lot of time with Google and it is not as all encompassing as it is supposed to be.
Lets ignore the preschool thing & talk about the baby.
This time last year (January 2012) I had had 5 maybe 6 sessions of chemo and was feeling quite positive about the fact that it was coming to an end. I was also still feeling slightly like crap and dealing with some of the milder side effects.
Now (January 2013) I have 15 weeks (give or take) until I welcome baby Hayllar number 3.
Since the moment I was diagnosed I have dreamt about this moment (well actually, since I am amazingly rubbish at being pregnant, the moment that the baby arrives). The moment that I can kick Cancers arse and prove that just because I have had cancer doesn't mean that you can't move on with your life and have new experiences.
I have been doing a lot of comparing this pregnancy with my other two. I have to say that this has been the easiest in terms of sickness & nausea. When I was pregnant with Isaac I vomited A LOT. There were incidences in petrol stations, on Christmas Day and at almost every other opportunity. I threw up almost every day from the moment I got a positive pregnancy test to the morning after I gave birth.
When I was pregnant with Imogen the vomiting started with the positive pregnancy test and there were first thing in the morning incidences, but there were also after I had dropped Isaac at the childminders by the side of the road incidents, in the loos at work throughout the day incidents. It did kind of tale off after about 30 weeks, but I still felt pretty rubbish. I can remember my last day at work, before I started maternity leave vomiting because a customers perfume was to strong.
This time (baby number 3) maybe my sickness/nausea threshold is much higher as I have only been sick about 6 or 8 times. I have felt nauseous and am still suffering from the dreaded heartburn, but have actually thrown up very little. I can't tell you why - maybe my body is more receptive to being pregnant. Maybe the combination of antidepressants that I took through my first and second pregnancies contributed to the nausea. Or maybe having suffered the never ending nausea of chemo and oxaliplatin my body has decided there are definitely worse things to vomit over.
So there you go, If you suffer from terrible morning sickness during pregnancy, have cancer, then chemo & suddenly things won't be so bad anymore.
Monday, 2 April 2012
Resoutions
Now most people have made their resolutions and broken them by the 2nd of January. However I promised myself at the start of the year that I wouldn't make or indeed break any resolutions until I was free of chemotherapy.
I suppose technically that was 14th March, the day I took my last handful of tablets, but I haven't felt like I am free of anything just yet
You see that's the thing about Cancer. It is now a permanent part of my life. I will forever be concerned that it will come back. I know plenty or people go on to live a long and healthy life and never have to deal with it again. I also know people who knock one type of cancer on the head and then have to deal with another and another and another.
I cannot say into which camp I will fall as I am still in the processing mode I have had part one of my follow up which was yet another CT scan, and on Tuesday I see my oncologist to confirm I am all clear.
Honestly I cannot see past that date at the moment. It will be at Crawley Hospital which is the same place I was when I was told that it was cancer, where I had to go to have my PICC line flushed & where there is a lot of negativity for me. Its not as bad as East Surrey which will forever be associated with the surgery and readmissions, or Royal Surrey where I had all the 'poxy oxi'
So until Tuesday life is still on hold, although there are crafty goings on, including purple prickles for a Gruffalo Costume...photos to follow
I suppose technically that was 14th March, the day I took my last handful of tablets, but I haven't felt like I am free of anything just yet
You see that's the thing about Cancer. It is now a permanent part of my life. I will forever be concerned that it will come back. I know plenty or people go on to live a long and healthy life and never have to deal with it again. I also know people who knock one type of cancer on the head and then have to deal with another and another and another.
I cannot say into which camp I will fall as I am still in the processing mode I have had part one of my follow up which was yet another CT scan, and on Tuesday I see my oncologist to confirm I am all clear.
Honestly I cannot see past that date at the moment. It will be at Crawley Hospital which is the same place I was when I was told that it was cancer, where I had to go to have my PICC line flushed & where there is a lot of negativity for me. Its not as bad as East Surrey which will forever be associated with the surgery and readmissions, or Royal Surrey where I had all the 'poxy oxi'
So until Tuesday life is still on hold, although there are crafty goings on, including purple prickles for a Gruffalo Costume...photos to follow
Wednesday, 14 March 2012
Goodbye and thanks for all...
The crap that you have inflicted on me over the last 6 months.
If you are wondering what on earth I am talking about today is a day for celebrating.
This morning I took my last handful of chemotherapy tablets which looked like this
and was looking forward to a morning 'bragging' about the fact that I no longer had to take chemotherapy. However things didn't quite go according to plan. As we were leaving the house to take Isaac to preschool he vomited all over the garden path so instead of having some adult conversation and lots of pats on the back I spent today watching this Thomas the Tank Engine film, which I can almost recite word for word and am planning on going on Mastermind with it as one of my specialist subjects and also a lot of cbeebies.
The thing with Isaac and being sick is he seems to have 6 hour bugs. After the vomit he had a sleep any by 1pm was back to normal, demanding to do cooking, play on my iPad and building the Island of Sodor all over my living room floor.
However this enforced sojourn at home gave me some time to reflect on my chemotherapy experience.
The overwhelming feeling I have at the moment is a strange one. I feel like a bit of a failure and have been beating myself up over the fact that I couldn't tolerate more Oxaliplatin. I know I managed 4 sessions, but I was supposed to have 8. Ultimately I had to think of my children and the impact that the chemotherapy was having on them but I can't help thinking that if (or when, depending on what mood I am in) cancer comes back I will be thinking if I had continued the 'poxy oxi' would it have been better?
Overall I have been very lucky and have not lost any of my hair, but there are worse side effects than that.
I am still suffering some of the oxaliplatin side effects.Tonight I took a bag of chips out of the freezer and dropped them because my fingers went all tingly and numb. On top of that my hands and feet are raw and cracked and no amount of cocoa butter and cotton gloves and socks can sort out. Since January I have gone through 3 tubes of Norwegian Formula handcream and still I have splits all over my thumbs and fingers, but I still have to get on with it. Add into that the fact that walking feels like walking on glass unless I have insoles in my boots.
And don't even get me started on the unpredictability of my bowels and the fact that this could be post surgery 'settling down' or a capcetibine side effect or some other thing that I hadn't even contemplated.
I think my potty trained daughter sums it up best. Whenever she sits on the potty or the toilet do do a poo she tells me
'Big, Big Scary POO mummy'
If you are wondering what on earth I am talking about today is a day for celebrating.
This morning I took my last handful of chemotherapy tablets which looked like this
The thing with Isaac and being sick is he seems to have 6 hour bugs. After the vomit he had a sleep any by 1pm was back to normal, demanding to do cooking, play on my iPad and building the Island of Sodor all over my living room floor.
However this enforced sojourn at home gave me some time to reflect on my chemotherapy experience.
The overwhelming feeling I have at the moment is a strange one. I feel like a bit of a failure and have been beating myself up over the fact that I couldn't tolerate more Oxaliplatin. I know I managed 4 sessions, but I was supposed to have 8. Ultimately I had to think of my children and the impact that the chemotherapy was having on them but I can't help thinking that if (or when, depending on what mood I am in) cancer comes back I will be thinking if I had continued the 'poxy oxi' would it have been better?
Overall I have been very lucky and have not lost any of my hair, but there are worse side effects than that.
I am still suffering some of the oxaliplatin side effects.Tonight I took a bag of chips out of the freezer and dropped them because my fingers went all tingly and numb. On top of that my hands and feet are raw and cracked and no amount of cocoa butter and cotton gloves and socks can sort out. Since January I have gone through 3 tubes of Norwegian Formula handcream and still I have splits all over my thumbs and fingers, but I still have to get on with it. Add into that the fact that walking feels like walking on glass unless I have insoles in my boots.
And don't even get me started on the unpredictability of my bowels and the fact that this could be post surgery 'settling down' or a capcetibine side effect or some other thing that I hadn't even contemplated.
I think my potty trained daughter sums it up best. Whenever she sits on the potty or the toilet do do a poo she tells me
'Big, Big Scary POO mummy'
Thursday, 19 January 2012
Drawing a (PICC) line under it
Sorry about that, I just need to let you all know that I have my arm back.
So, on Wednesday I drove across to Guildford because I knew I would not be having any 'proxy oxy' as defined on many bowel cancer forums.
On speaking to my oncologist it spears that i was given a higher dose/regieme than is normally used. I should have questioned this but didn't think about it at the time. I think I will in next time, if I remember!!
Then he said those amazing words 'i think that your PICC can come out'
This means that tomorrow morning I can have a shower and not wrap my arm in cling film. Although this is a useful skill I have acquired over the last 5 months I can't see it being something I will advertise on my cv! If you think it sounds easy I urge you to try and wrap your own bicep in cling film one evening and let me know how it goes.
So the PICC is out, the skin is very dry and shares in palmers cocoa butter are going to go sky high as this is the only thing that tackles my really dry skin.
I have also started thinking about the direction of this blog once the chemo has finished. I hope you will still stay with me because I think I may start boring you with some of my craftyness.
There will be pictures, rants about difficult patterns and hopefully some finishing of long term UFO (unfinished objects) and an update on my WIP (work in progress). I shall tell you about what I have OTN or OTH (on the needles or on the hooks) and show you my wishlists of projects.
My first UFO I really want to finish are the bobble cushions I started when Imogen was 6 weeks old. I can't find a link at the moment but will make sure i do before long.
Wednesday, 28 December 2011
I'm full of Christmas cheer
So, I had my 5th chemotherapy appointment this morning and am currently sat in guildford friary shopping centre before heading back to the hospital to pick up my tablets. There will be no IV drip today.
As regular readers will know I have really suffered with the sensitivity to cold caused by the oxaliplatin. After session number 4, I was regularly having to cover my mouth when out walking to stop me becoming very short of breath, I I was feeling the cold through gloves especially when pushing the pushchair & even struggled unloading the washing machine yesterday because the laundry was cold and my fingers went all numb again.
I told all this to my dotor and he appeared to be concerned enough to stop the oxaliplatin and give me a larger dose of capceitabine(?).
To be honest at this moment in time I am not sure what I feel. I don't know if this is a permanent solution or whether I will have to have it again in the future.
I feel like a bit of a cop out. I was bought up that you finished a course of medication and having been on anti depressants for the best part of 10 years I know what the effects of missing one day/treatment can be. On the other hand, the side effects were seriously affecting my quality of life and more importantly my relationships with tony and the children.
So what now? As mentioned I have been for a shop in Guildford and spent most of my Christmas money and have to head back to the hospital soon to pick up my tablets and have my PICC line flushed and redressed.
But at least now I will be able to drink cold drinks and can go back to having cereal for breakfast rather than porridge, which I am not a massive fan off!!
Sunday, 6 November 2011
Something on Side Effects
I am rapidly coming to the conclusion that the side effects are far worse than anything I have been through so far.
A new one hit me today - painful soles of feet. I had forgotten that this might happen until it hit me this morning that my feet shouldn't really hurt.
After a quick trip to Sainsburys to invest in Milk, Bread, Oil and some insoles, which might or might not work. I decided to look at the interweb.
I have found the forum on Beating Bowel Cancer really helpful and was not disappointed this time either.
It seems that this particular side effect is going to get worse and I might have some days when I am going to struggle to put weight on my feet. This will be .....mildly inconvenient to say the least with 2 active toddlers who need entertaining.
However I have also found out that reflexology may be helpful with this particular side effect and the local Cancer support centre, The Olive Tree, offers reflexology to cancer patients. So now I have to find time to locate my Olive Tree information pack, find out when they offer relexology, call them, book it & crucially attend the session. But I will, I have already managed to book a Yoga session with them for next Friday & more importantly it allowed me to invest in a new yoga mat, because mine was looking a bit the worse for wear.
So what other side effects have their been?
Well the weirdest one is the sensitivity to cold. That kicks in as soon as I leave the hospital. When I am walking down the corridor some moisture on my lips makes them start to tingle. It gets worse. I can't go in the fridge, freezer, pick up cold clothes, use the wet wipes, take wet clothes out of the washing machine, touch the wet car etc etc etc. I thought that it wouldn't last too long, but I am only on cycle 2 of 8 and there is still a little bit of tingling going on every now and then.
Then there are the 'conventional' side effects
- Tiredness normally kicks in about 2-3 days after the treatment and is sheer exhaustion. I need to sit on the sofa and sleep, but 2 toddlers do make that difficult, but I can then go to bed and try and get a full nights sleep.
- Nausea can be controlled by the multitude of pills I am given and by the 2nd weekend I am normally eating normally, although the quantities are smaller so I am loosing more weight. I know most women would be excited by the prospect of loosing weight, but I have never bothered about my weight. I think with my height I can kind of pull it off and if I am too slim I think I look ill rather than healthy.
There are other side effects too. I think my hair is starting to thin, because I am certainly fishing more out of the shower than I used too. This doesn't really bother me.
I am also a lot more irritable than I used to be. I am not happy about this. I am snapping at the kids and don't want to do that. Its not their fault. I am hoping that the yoga and maybe a massage well help reduce my stress levels and henceforth reduce my irritability although I also think that a good nights sleep would probably have the same effect!!
I am sure I will have more to say on this subject as my treatment progresses and things get worse, but for now I am done!!
A new one hit me today - painful soles of feet. I had forgotten that this might happen until it hit me this morning that my feet shouldn't really hurt.
After a quick trip to Sainsburys to invest in Milk, Bread, Oil and some insoles, which might or might not work. I decided to look at the interweb.
I have found the forum on Beating Bowel Cancer really helpful and was not disappointed this time either.
It seems that this particular side effect is going to get worse and I might have some days when I am going to struggle to put weight on my feet. This will be .....mildly inconvenient to say the least with 2 active toddlers who need entertaining.
However I have also found out that reflexology may be helpful with this particular side effect and the local Cancer support centre, The Olive Tree, offers reflexology to cancer patients. So now I have to find time to locate my Olive Tree information pack, find out when they offer relexology, call them, book it & crucially attend the session. But I will, I have already managed to book a Yoga session with them for next Friday & more importantly it allowed me to invest in a new yoga mat, because mine was looking a bit the worse for wear.
So what other side effects have their been?
Well the weirdest one is the sensitivity to cold. That kicks in as soon as I leave the hospital. When I am walking down the corridor some moisture on my lips makes them start to tingle. It gets worse. I can't go in the fridge, freezer, pick up cold clothes, use the wet wipes, take wet clothes out of the washing machine, touch the wet car etc etc etc. I thought that it wouldn't last too long, but I am only on cycle 2 of 8 and there is still a little bit of tingling going on every now and then.
Then there are the 'conventional' side effects
- Tiredness normally kicks in about 2-3 days after the treatment and is sheer exhaustion. I need to sit on the sofa and sleep, but 2 toddlers do make that difficult, but I can then go to bed and try and get a full nights sleep.
- Nausea can be controlled by the multitude of pills I am given and by the 2nd weekend I am normally eating normally, although the quantities are smaller so I am loosing more weight. I know most women would be excited by the prospect of loosing weight, but I have never bothered about my weight. I think with my height I can kind of pull it off and if I am too slim I think I look ill rather than healthy.
There are other side effects too. I think my hair is starting to thin, because I am certainly fishing more out of the shower than I used too. This doesn't really bother me.
I am also a lot more irritable than I used to be. I am not happy about this. I am snapping at the kids and don't want to do that. Its not their fault. I am hoping that the yoga and maybe a massage well help reduce my stress levels and henceforth reduce my irritability although I also think that a good nights sleep would probably have the same effect!!
I am sure I will have more to say on this subject as my treatment progresses and things get worse, but for now I am done!!
Wednesday, 26 October 2011
Ding, Ding, Ding, ROUND 2
Wow, if you have a problem complain.
Although today was chemo day it was so much nicer than last time.
It was a long day. Left the house just after 7am, train at 7.25, change at Gatwick, train to Guildford, walk to Bus Station, Bus to hospital (£1.60 what a RIp Off), get lost in hospital due to really erratic signposting.
Let the receptionist know I was here, then wait and wait and wait.
I was called in about 20 minutes late and then I let rip.
I told the consultant all about the fiasco I had suffered the previous time. He looked shocked, he said that he had never heard of this kind of failure in the system and then he arranged for me to talk to one of the chemo nurses to explain what had happened too.
After getting everything off my chest, he checked all my blood results and how I had coped with the previous treatment. He explained that the some of the side effects would be cumulative so they would get progressively worse. Yay what fun, I can hardly wait, and I can already notice it. As I sit here typing my fingers are all tingley and I feel quite nauseous although I can't take the next anti sickness until bed time.
I then spoke to the chemo nurse and went through it all again. You know the fiasco so I don't need to go through it all again for you here.
By now it was 11.30 and I was supposed to go for treatment at 12noon, but I was starving & did not want go have hospital food. The chemo nurse had told me that the treatment would not be delivered until 1pm at the earliest so I had some leeway.
I went to try and find the restaurant. I had a quick look and could not see any card machines. So I checked. What a joke - The hospital restaurant only takes cash. What happens if you have been admitted to A&E and don't have any cash. I was shocked, how in the 21st century can a major hospital restaurant not take plastic.
Then I remembered. When I had come into the hospital earlier I had seen a Costa, surely they would take cards and have sandwiches. Thank You Costa Coffee. They took cards, but not loyalty cards.
I had a sandwich and coffee and headed back up to the Chilworth Day Unit just after midday and didn't have to wait very long until I was called through and told to find a seat. The nurse came and explained that they would flush the line, change the dressing and then once the treatment was delivered it would take about 2.30 hours to go through and be flushed again.
So I was hooked up, took out the paper and educated myself about current affairs, taxed my brain with the suduko & crosswords, plugged into my ipod I can honestly say that it wasn't too bad. The Zutons kept playing, although I was on shuffle and I was transported back to 2004 and Glastonbury in the New Bands Tent and the mud and I felt happy.
About 2.30 Tony & the children arrived. I wasn't sure about this as they might not have been too confident. But I am so glad they came up. The smiles on fellow patients faces were incredible. To know that my children could do that was fab & I hope I cheered up some peoples otherwise rubbish days.
So now I am home and the eyes have stopped twitching, but the tingling is bad. Wearing Gloves however makes operating a mouse, iPod touch and wiping bottoms inconvenient so I have to grin & bear it.
Although today was chemo day it was so much nicer than last time.
It was a long day. Left the house just after 7am, train at 7.25, change at Gatwick, train to Guildford, walk to Bus Station, Bus to hospital (£1.60 what a RIp Off), get lost in hospital due to really erratic signposting.
Let the receptionist know I was here, then wait and wait and wait.
I was called in about 20 minutes late and then I let rip.
I told the consultant all about the fiasco I had suffered the previous time. He looked shocked, he said that he had never heard of this kind of failure in the system and then he arranged for me to talk to one of the chemo nurses to explain what had happened too.
After getting everything off my chest, he checked all my blood results and how I had coped with the previous treatment. He explained that the some of the side effects would be cumulative so they would get progressively worse. Yay what fun, I can hardly wait, and I can already notice it. As I sit here typing my fingers are all tingley and I feel quite nauseous although I can't take the next anti sickness until bed time.
I then spoke to the chemo nurse and went through it all again. You know the fiasco so I don't need to go through it all again for you here.
By now it was 11.30 and I was supposed to go for treatment at 12noon, but I was starving & did not want go have hospital food. The chemo nurse had told me that the treatment would not be delivered until 1pm at the earliest so I had some leeway.
I went to try and find the restaurant. I had a quick look and could not see any card machines. So I checked. What a joke - The hospital restaurant only takes cash. What happens if you have been admitted to A&E and don't have any cash. I was shocked, how in the 21st century can a major hospital restaurant not take plastic.
Then I remembered. When I had come into the hospital earlier I had seen a Costa, surely they would take cards and have sandwiches. Thank You Costa Coffee. They took cards, but not loyalty cards.
I had a sandwich and coffee and headed back up to the Chilworth Day Unit just after midday and didn't have to wait very long until I was called through and told to find a seat. The nurse came and explained that they would flush the line, change the dressing and then once the treatment was delivered it would take about 2.30 hours to go through and be flushed again.
So I was hooked up, took out the paper and educated myself about current affairs, taxed my brain with the suduko & crosswords, plugged into my ipod I can honestly say that it wasn't too bad. The Zutons kept playing, although I was on shuffle and I was transported back to 2004 and Glastonbury in the New Bands Tent and the mud and I felt happy.
About 2.30 Tony & the children arrived. I wasn't sure about this as they might not have been too confident. But I am so glad they came up. The smiles on fellow patients faces were incredible. To know that my children could do that was fab & I hope I cheered up some peoples otherwise rubbish days.
So now I am home and the eyes have stopped twitching, but the tingling is bad. Wearing Gloves however makes operating a mouse, iPod touch and wiping bottoms inconvenient so I have to grin & bear it.
Wednesday, 31 August 2011
Chemotherapy - a lesson in timings
So, we turned up a the hospital prepared for a wait this time. The appointment was at 2pm and we were seen fairly promptly.
It started with me being weighed and measured. I know a women shouldn't talk about her weight, but I have always been slightly overweight, although with my height I have never looked it. The last time I weighed myself was on the Wii Fit, so not neccessarily as accurate but I was between 95 and 100kg. Yesterday I weighed 85kg, coupled with my height I am now officially (according to the BMI charts) 'Healthy'
When we went in to see the oncologist he made some small talk about how I was feeling, how I was recovering and did I have any other health problems. At this point we did have too mention the low blood pressure and whether it was since the operation or not. Too be honest I don't really know. I went too the GP about it the Wednesday before all this started. It had been going on for about 6 weeks before that and coupled with the anaemia, who really knows what was going on!!!!
Then we talked some more about the tumour. The oncologist categorise them as 'A', 'B' or 'C'. 'A' tumours are very localised and don't benefit from Chemo, 'C' tumours have spread and definitely require further treatment & 'B' tumours, which is were I fall in, are difficult to treat.
It depends on the features of the tumour. Because my tumour had spread through the bowel wall (T4) chemo would be recommended. Chemo however is not a wonder treatment. It is only going to give me a 5% EXTRA chance of not getting cancer again based on someone who had the same type of cancer and didn't have chemo.
So onto the chemo itself, which is not going to start for a while yet.
I am going to have a combination of an intravenous drug called Oaliplatin, which will be administered once every three weeks at St Lukes Cancer Centre in Guildford and a 14 day course of Capecitabine tablets with a one week 'rest period' before the whole thing starts again. I will have 8 courses of this which is going to take 6 months.
However before all this can start I am going to have 'ovarian preservation'
I know I am very lucky that I have 2 beautiful children and should not expect more. But what woman could say that she would not be devastated at the thought that she might not be able to have any more children & that the choice was taken away from her through no fault of her own. So, yes, I am doing everything I can to allow me the opportunity to have more children in the future. If you think that that makes me selfish, then that is your choice, but unless you have been in my situation you cannot make any judgements.
So thats it, 8 lots of a 3 week chemo cycle, which will last the best part of 6 months, will leave me feeling rubbish and wanting and needing support from everyone
It started with me being weighed and measured. I know a women shouldn't talk about her weight, but I have always been slightly overweight, although with my height I have never looked it. The last time I weighed myself was on the Wii Fit, so not neccessarily as accurate but I was between 95 and 100kg. Yesterday I weighed 85kg, coupled with my height I am now officially (according to the BMI charts) 'Healthy'
When we went in to see the oncologist he made some small talk about how I was feeling, how I was recovering and did I have any other health problems. At this point we did have too mention the low blood pressure and whether it was since the operation or not. Too be honest I don't really know. I went too the GP about it the Wednesday before all this started. It had been going on for about 6 weeks before that and coupled with the anaemia, who really knows what was going on!!!!
Then we talked some more about the tumour. The oncologist categorise them as 'A', 'B' or 'C'. 'A' tumours are very localised and don't benefit from Chemo, 'C' tumours have spread and definitely require further treatment & 'B' tumours, which is were I fall in, are difficult to treat.
It depends on the features of the tumour. Because my tumour had spread through the bowel wall (T4) chemo would be recommended. Chemo however is not a wonder treatment. It is only going to give me a 5% EXTRA chance of not getting cancer again based on someone who had the same type of cancer and didn't have chemo.
So onto the chemo itself, which is not going to start for a while yet.
I am going to have a combination of an intravenous drug called Oaliplatin, which will be administered once every three weeks at St Lukes Cancer Centre in Guildford and a 14 day course of Capecitabine tablets with a one week 'rest period' before the whole thing starts again. I will have 8 courses of this which is going to take 6 months.
However before all this can start I am going to have 'ovarian preservation'
I know I am very lucky that I have 2 beautiful children and should not expect more. But what woman could say that she would not be devastated at the thought that she might not be able to have any more children & that the choice was taken away from her through no fault of her own. So, yes, I am doing everything I can to allow me the opportunity to have more children in the future. If you think that that makes me selfish, then that is your choice, but unless you have been in my situation you cannot make any judgements.
So thats it, 8 lots of a 3 week chemo cycle, which will last the best part of 6 months, will leave me feeling rubbish and wanting and needing support from everyone
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