Tomorrow I, and nine of my friends and family, are taking part in Race For Life. This is one of a series of races that you can run or walk to raise money for Cancer Research UK. Between us, and in the name of my beautiful brave DD, we've raised over £2,000.
Words can't describe how I feel right now. One of the things you get in your race pack is a piece of paper that you can pin to your back to say who you are running Race For Life for. My list is too long to fit on the piece of paper. I think I'll take a lot of tissues with me tomorrow.
For all the injured and the fallen in the battle against cancer. For every parent who has had to watch their child go through it or had to tell their child they have cancer. For every child who's asked if Mummy or Daddy or Granny or Grandpa will die.
We will win.
Saturday 22 June 2013
Wednesday 19 June 2013
Sometimes
Can I tell you a secret? It's a horrible secret, a filthy secret, something I definitely shouldn't even contemplate and certainly something that doesn't suit my cancer survivor status.
Sometimes I wish the cancer had won.
There'd be a noble tragedy about it, and I wouldn't have to take the blame in the same way I would as a suicide. And I'd be out of here. Sometimes that feels like a win-win situation.
The key word here is "sometimes". I'm not about to do anything, btw. I'm writing this because I had a rubbish day, right down in the black depressive hole. It wasn't even all bad, in fact most of it was good. I spent a lot of it in meetings and was effective in them. I went for my first outside run in 10 months and didn't completely suck. But then, come the children's bedtime, I could feel my fuse shortening and shortening. They wouldn't listen. I shouted. I looked around and saw piles of stuff to do everywhere, and before I knew it I didn't know where to start or how. I needed to take time out and eat supper but didn't want to eat because I am still putting on weight at a rate of knots and I hate myself for it. The evening progressed through a small sobbing panic attack to me sat on the sofa in my little shell, not talking. And at times like these, I want a way out.
It's 4 am. After food and sleep I feel better but also guilty, for thinking this way, for being so horrible to my family. And angry, bloody angry, for the first time. Because I didn't ask for this and I didn't do anything to deserve having my life torn up and the pieces scattered on the table for me to somehow stick back together.
I just hope my family can forgive me for what I think, what I have become. It isn't me, it's fucking cancer.
Friday 7 June 2013
Borg free
No, I have not given up tennis nor committed a typo relating to a film about lions. The portacath, the marvellous device that has made chemo so much easier whilst making me feel like Seven of Nine without the catsuit, is gone. Lots of waiting around, a good dose of sedative, what felt like an eternity of tugging and some stitches later and it's gone. I did ask to see it and the actual line is bloody long!
So that is the end of that. Normal life, ish, can resume.
Saturday 25 May 2013
Line on the left...
There's a distorted version of society in day spas. My text-hugging friend and I have a day booked at The Sanctuary to enjoy a catch up and some non-toxic therapy. The clientele seems to divide into the following:
- Women over 50
- Women in need of a day's sleep
- Pregnant women
- Cancer patients
It's like a hospital, but with nicer facilities, although they do make you write your own notes. Filling in the medical questionnaire takes ages.
Thursday 16 May 2013
Angelina's choices
The press today is full of discussion about Angelina Jolie's decision to have a double mastectomy to prevent breast cancer. She carries the BRCA1 gene, giving her an 87% chance of getting breast cancer and a 50% chance of getting ovarian cancer, the same cancer that killed her mother. The process has meant some pre-operative preparation, the mastectomies and then reconstruction, taking 8 weeks or so in all. During this time she has continued to work and no-one has noticed a thing. Now she has taken the plunge, others are revealing their cancer battles too. Her interview, with The Times, is incredibly matter-of-fact: I had these odds presented to me, I wanted to give myself the best chance of a future with my family so here is what I did. The articles praise her bravery - and take the "opportunity" to publish pictures of her in the skimpiest outfits possible.
This all sets me thinking - is it really that brave to take the treatment, preventative, curative or palliative? Or is it a courage born of necessity? No-one wants to go through pain and illness but when, like Angelina, you're faced with the choice between treatment pain and dying pain, between seeing your children grow up and them seeing you crumble away, that doesn't strike me as courage.
Please don't misunderstand me, I am in no way denigrating what she or any other cancer affected person has gone through. It just made me think a bit about the times people have said to me, "You're so brave, going through that horrible treatment". And I've smiled shyly, shaken my head and rejected the compliment in that terribly British way. Then I look at my children and realise there's nothing else I could have done. When cancer leaves you with only one choice you can make - between living and dying - that's no choice at all.
This all sets me thinking - is it really that brave to take the treatment, preventative, curative or palliative? Or is it a courage born of necessity? No-one wants to go through pain and illness but when, like Angelina, you're faced with the choice between treatment pain and dying pain, between seeing your children grow up and them seeing you crumble away, that doesn't strike me as courage.
Please don't misunderstand me, I am in no way denigrating what she or any other cancer affected person has gone through. It just made me think a bit about the times people have said to me, "You're so brave, going through that horrible treatment". And I've smiled shyly, shaken my head and rejected the compliment in that terribly British way. Then I look at my children and realise there's nothing else I could have done. When cancer leaves you with only one choice you can make - between living and dying - that's no choice at all.
Supplements
Having been pretty anti supplements previously, I've reconsidered my position. This is mostly due to feeling the effects on my body of the recovery process, on my teeth in particular. They were really sensitive, probably from the chemo stripping out all my calcium, but as the days go by they feel better and better, to the point where I can eat ice cream again (as long as it's only on one side - the other is still pretty raw). I might even stop microwaving my cereal to take the chill off it.
So I hit the Internet and my supplement list now reads:
Multi-vitamin and mineral - for general support
Ibuprofen - for the joint inflammation
Turmeric - good for bowel cancer patients, apparently (I figure it can't hurt)
Garlic - said to be good for health generally (and I happened to have some kicking around!)
Maxi green - a capsule containing wheatgrass, spirulina, chorella and some other green substances. Fresh wheatgrass is supposed to be better but as I can't be bothered with juicing it fresh and we're going away on holiday soon, this is more convenient. The whole lot are said to be full of minerals and vitamins and help with energy levels. We shall see.
So I hit the Internet and my supplement list now reads:
Multi-vitamin and mineral - for general support
Ibuprofen - for the joint inflammation
Turmeric - good for bowel cancer patients, apparently (I figure it can't hurt)
Garlic - said to be good for health generally (and I happened to have some kicking around!)
Maxi green - a capsule containing wheatgrass, spirulina, chorella and some other green substances. Fresh wheatgrass is supposed to be better but as I can't be bothered with juicing it fresh and we're going away on holiday soon, this is more convenient. The whole lot are said to be full of minerals and vitamins and help with energy levels. We shall see.
Definitely ALL CLEAR!
One week after the colonoscopy and I'm waiting for the phone call from the surgeon's secretary asking me politely if I wouldn't mind bringing my appointment forward. This is what happened last time and the part of me that can't bring myself to believe that the cancer has gone is anticipating a re-run. But I try to keep cheerful, even saying to my Mum that no news must be good news.
The very minute I finish my phone call with my Mum, the phone goes again and the surgeon's secretary's number flashes up. My heart sinks into the floor but it's good news - no sign of anything at all.
At last, the proper All Clear. Somehow this one feels like it truly might be over. There are no more areas of doubt or uncertainty. The cancer is gone and I can pick myself up and move on.
The very minute I finish my phone call with my Mum, the phone goes again and the surgeon's secretary's number flashes up. My heart sinks into the floor but it's good news - no sign of anything at all.
At last, the proper All Clear. Somehow this one feels like it truly might be over. There are no more areas of doubt or uncertainty. The cancer is gone and I can pick myself up and move on.
Friday 10 May 2013
Moving on... Or not
The past two weeks have been hectic. Life seems to have kicked back in, but in a curious new shape governed by cancer.
In the "normality" corner we have a long weekend in the West Country with my in-laws, doing normal stuff like playing on the beach and sitting in the sunshine. Everyone - me included - relaxes. This is what life should be like.
In the "cancer" corner we have a colonoscopy to check out the bit that wasn't clear on the scanner. My oncologist finished the last consultation by telling me that she, my surgeon and her usual radiologist would discuss what they wanted to do at the next MDT, and she would call me. Unusually for her, she didn't, so the first I knew was the surgeon's secretary calling me to arrange a full colonoscopy. Good job I'm not a panicker... The surgeon's secretary is marvellous, not only fitting me in quickly but arranging things so that I don't have to do two days bowel prep but can "clear out" (ahem) on the ward on the day. This is important as the procedure is the day after we get back from the West Country and five hours in the inevitable Bank Holiday traffic jams whilst trying to deal with the effects of a dose of Picolax just doesn't appeal somehow.
The procedure is routine and he finds nothing alarming. There's one tiny nodule that he biopsies but nothing more than that. Back to see him in a month for results.
There is also an assessment by the Occupational Health doctor. My Mum takes me as the colonoscopy was the previous day and the sedative is still in my system. Frankly it could have been done on the phone, as all we do is chat. He asks very general questions about fatigue and emotional state, then declares that there is no medical reason I can't go back to work on reduced hours, with a mix of office and home working. I have to explain to him the peripheral neuropathy problems and the memory/cognitive capability problems.
This is good news and bad news. Good news because I do want to get back to work; bad news because I'm not sure how this is going to work. The day after I see Occ Health I'm so tired I can't think straight. There's so much to do without being at work that I can't see how it's all going to get done now, never mind when I'm trying to work as well. Nothing I've tried shakes this low - not choir, not gym, nothing. Maybe sleep will help...
In the "normality" corner we have a long weekend in the West Country with my in-laws, doing normal stuff like playing on the beach and sitting in the sunshine. Everyone - me included - relaxes. This is what life should be like.
In the "cancer" corner we have a colonoscopy to check out the bit that wasn't clear on the scanner. My oncologist finished the last consultation by telling me that she, my surgeon and her usual radiologist would discuss what they wanted to do at the next MDT, and she would call me. Unusually for her, she didn't, so the first I knew was the surgeon's secretary calling me to arrange a full colonoscopy. Good job I'm not a panicker... The surgeon's secretary is marvellous, not only fitting me in quickly but arranging things so that I don't have to do two days bowel prep but can "clear out" (ahem) on the ward on the day. This is important as the procedure is the day after we get back from the West Country and five hours in the inevitable Bank Holiday traffic jams whilst trying to deal with the effects of a dose of Picolax just doesn't appeal somehow.
The procedure is routine and he finds nothing alarming. There's one tiny nodule that he biopsies but nothing more than that. Back to see him in a month for results.
There is also an assessment by the Occupational Health doctor. My Mum takes me as the colonoscopy was the previous day and the sedative is still in my system. Frankly it could have been done on the phone, as all we do is chat. He asks very general questions about fatigue and emotional state, then declares that there is no medical reason I can't go back to work on reduced hours, with a mix of office and home working. I have to explain to him the peripheral neuropathy problems and the memory/cognitive capability problems.
This is good news and bad news. Good news because I do want to get back to work; bad news because I'm not sure how this is going to work. The day after I see Occ Health I'm so tired I can't think straight. There's so much to do without being at work that I can't see how it's all going to get done now, never mind when I'm trying to work as well. Nothing I've tried shakes this low - not choir, not gym, nothing. Maybe sleep will help...
Saturday 27 April 2013
First steps of next steps
Three positives this week (above the all clear, obviously):
I see a recruitment consultant on Monday, to discuss possible options. I would like to be back in a client facing role and she seems to think it's a tricky one, but not impossible. She produces a list of target firms and some interesting angles of approach. Whilst it feels disloyal to my current employers, who have been marvellous, this could take months to come to fruition so there's no harm in dipping a toe in the water.
Work start being proactive in helping me back to work, so occupational health are on the move with assessments and return to work plans. At a guess, I'll be back sometime in late May or early June.
I see a counsellor on Friday. It helps to talk to someone whose feelings I don't have to consider, who is outside all this, and she and I are going to have more sessions. DH is coming along, too. It will be painful, but worth it if it helps us come to terms with our new life.
I see a recruitment consultant on Monday, to discuss possible options. I would like to be back in a client facing role and she seems to think it's a tricky one, but not impossible. She produces a list of target firms and some interesting angles of approach. Whilst it feels disloyal to my current employers, who have been marvellous, this could take months to come to fruition so there's no harm in dipping a toe in the water.
Work start being proactive in helping me back to work, so occupational health are on the move with assessments and return to work plans. At a guess, I'll be back sometime in late May or early June.
I see a counsellor on Friday. It helps to talk to someone whose feelings I don't have to consider, who is outside all this, and she and I are going to have more sessions. DH is coming along, too. It will be painful, but worth it if it helps us come to terms with our new life.
Side effects review
Four weeks post the last chemo dose, a status review on side effects:
Weight gain - still there! I am being a bit more disciplined about food though and trying to be calm about it. The only point I got really distressed was when I had to take my wedding and signet rings off because my fingers had expanded (see below).
Peripheral neuropathy - still limited to my fingertips and soles of my feet, which affects my balance. No sign of improvement yet but this can take up to a year to clear, if it does at all.
Hormones - no sign of normal monthly cycle resuming, but the Zoladex is only just wearing off. The oncologist advises that if things aren't back to normal in a couple of months then I should see the GP as it will probably mean premature menopause and I'll need some help to prevent osteoporosis.
Tiredness - improving, in that I no longer need a nap in the afternoon. I still can't stay up later than 9 pm without nodding off though.
Swollen joints - this is a new one. Apparently my newly recharged immune system is in overdrive and attacking my joints, causing a slight arthritic swelling. This is a) not permanent and can be fixed with regular doses of ibuprofen or paracetamol until the problem goes away and b) not unusual in younger patients. And I thought I couldn't take my rings off because of the weight gain!
Fingernails - brittle and flaky. You can see the chemo coming through like rings in a tree trunk.
Brain function - my memory is still unreliable, but it doesn't seem to be getting worse.
I'm taking some multivitamins, minerals and probiotics, but I'm thinking about more specific supplements to help with the repair work. Yes, even turmeric is on the list.
Weight gain - still there! I am being a bit more disciplined about food though and trying to be calm about it. The only point I got really distressed was when I had to take my wedding and signet rings off because my fingers had expanded (see below).
Peripheral neuropathy - still limited to my fingertips and soles of my feet, which affects my balance. No sign of improvement yet but this can take up to a year to clear, if it does at all.
Hormones - no sign of normal monthly cycle resuming, but the Zoladex is only just wearing off. The oncologist advises that if things aren't back to normal in a couple of months then I should see the GP as it will probably mean premature menopause and I'll need some help to prevent osteoporosis.
Tiredness - improving, in that I no longer need a nap in the afternoon. I still can't stay up later than 9 pm without nodding off though.
Swollen joints - this is a new one. Apparently my newly recharged immune system is in overdrive and attacking my joints, causing a slight arthritic swelling. This is a) not permanent and can be fixed with regular doses of ibuprofen or paracetamol until the problem goes away and b) not unusual in younger patients. And I thought I couldn't take my rings off because of the weight gain!
Fingernails - brittle and flaky. You can see the chemo coming through like rings in a tree trunk.
Brain function - my memory is still unreliable, but it doesn't seem to be getting worse.
I'm taking some multivitamins, minerals and probiotics, but I'm thinking about more specific supplements to help with the repair work. Yes, even turmeric is on the list.
The wine industry owes me
24 hours post results and 12 hours after announcing the all clear on Facebook, going by the texts and comments I count at least seven bottles of champagne/sparkling wine being opened and that doesn't include ours. Any excuse...
The response is overwhelming. Both my in-laws cry. Several of my friends cry, many of them at their desks in their offices. My Facebook status is full of happy hugs, kisses and cries of delight. DH goes to work and is missile-hugged by one of his colleagues. I didn't realise so many people cared so much - it's easy to forget the world outside your own battle bubble.
DD skips home from school, singing, "Cancer got its butt kicked". DS gives me a huge hug and rewards me by sleeping through for two nights.
Emotionally, this is a weird moment. I should be on top of the world, but it all feels like a bit of an anti-climax. When I came up with the title of this blog it was in response to the original diagnosis but the "So now what?" question has been pertinent so many times since then and never more so than now. But for a few days we can all relax and celebrate.
The response is overwhelming. Both my in-laws cry. Several of my friends cry, many of them at their desks in their offices. My Facebook status is full of happy hugs, kisses and cries of delight. DH goes to work and is missile-hugged by one of his colleagues. I didn't realise so many people cared so much - it's easy to forget the world outside your own battle bubble.
DD skips home from school, singing, "Cancer got its butt kicked". DS gives me a huge hug and rewards me by sleeping through for two nights.
Emotionally, this is a weird moment. I should be on top of the world, but it all feels like a bit of an anti-climax. When I came up with the title of this blog it was in response to the original diagnosis but the "So now what?" question has been pertinent so many times since then and never more so than now. But for a few days we can all relax and celebrate.
Results day
Surprise surprise, I don't sleep well on Wednesday night and end up watching medical dramas in the wee small hours. I skip the NHS fly-on-the-wall documentary as I know it has a piece on terminal cancer patients that I can't bear to watch.
The idea was to go early and get my portacath flushed. The district nurses won't do it because they won't insert access needles, so it seems sensible that as I'm there to see the consultant I kill two birds with one stone. But the unit is really busy with 19 patients; the lovely staff only have time to wave quick hellos to me as they rush by. And then it's time.
The oncologist wastes no time, thankfully. With the bare minimum of social niceties over, she launches straight into the results. The blood tests show CEA (the cancer protein "marker") levels of 2, which is normal. The CT scan is clear. There is an area of uncertainty in the bowel that she thinks is around the anastomosis (the join), but that is most likely stool blocking the scan view or scar tissue. It's unlikely to be a polyp given their slow rate of growth, but she will discuss it with my surgeon and the radiologist who usually looks at the colo-rectal scans at the MDT on Tuesday and then call me to let me know if the surgeon wants to go back in and check it out.
She gives me the formal staging and grading: grade 2 (moderately aggressive) tumour with Dukes C T2 N2 staging. She comments that the T2N2 staging is unusual in bowel cancers, with the tumour usually being larger before progress to the nodes, but then I'm not in the usual category of bowel cancer patients anyway.
Then comes the reminder that this is not over. Bloods in three months time, another scan in six. A review of progress on the side effects. There's a way to go yet before normality is reached.
Back to the unit, where finally I get the portacath flush done, then out into the glorious spring sunshine. We phone our families and text our friends before treating ourselves to a steak lunch. I'll have my steak rare, please, with a glass of cava.
The idea was to go early and get my portacath flushed. The district nurses won't do it because they won't insert access needles, so it seems sensible that as I'm there to see the consultant I kill two birds with one stone. But the unit is really busy with 19 patients; the lovely staff only have time to wave quick hellos to me as they rush by. And then it's time.
The oncologist wastes no time, thankfully. With the bare minimum of social niceties over, she launches straight into the results. The blood tests show CEA (the cancer protein "marker") levels of 2, which is normal. The CT scan is clear. There is an area of uncertainty in the bowel that she thinks is around the anastomosis (the join), but that is most likely stool blocking the scan view or scar tissue. It's unlikely to be a polyp given their slow rate of growth, but she will discuss it with my surgeon and the radiologist who usually looks at the colo-rectal scans at the MDT on Tuesday and then call me to let me know if the surgeon wants to go back in and check it out.
She gives me the formal staging and grading: grade 2 (moderately aggressive) tumour with Dukes C T2 N2 staging. She comments that the T2N2 staging is unusual in bowel cancers, with the tumour usually being larger before progress to the nodes, but then I'm not in the usual category of bowel cancer patients anyway.
Then comes the reminder that this is not over. Bloods in three months time, another scan in six. A review of progress on the side effects. There's a way to go yet before normality is reached.
Back to the unit, where finally I get the portacath flush done, then out into the glorious spring sunshine. We phone our families and text our friends before treating ourselves to a steak lunch. I'll have my steak rare, please, with a glass of cava.
Waiting
Scan and bloods all done without incident, if one ignores the slight panic caused by me forgetting to tell the radiographer about my portacath. Poor chap, he came pegging out of his room at high speed, "Have you got a necklace on?". No, don't panic, it's my portacath. Relief all round.
So, nothing to be done but wait. Actually I'm surprisingly sanguine about it all, but this is because I've completely reconciled myself to the news being bad. After all, we have yet to have an appointment with the consultant that is good news. Pessimistic though this approach is, if I don't think this way I'm not sure I can take the knock if it isn't.
We keep busy, me and DH, pottering around the house, doing paperwork and gardening and planning our party that we're having in July just because we fancy a party. I go out to see Counting Crows, who appear to be trying to set a record for the most number of instruments played in one gig - there isn't a single song that doesn't involve a change of guitars for all three guitarists, a procedure that sends the ZZ Top lookalike roadies scurrying about like mad. It's the first gig I've been to where I'm sitting down, so now I know I'm properly old! But it's the first gig I've been to in ages, having had to miss The Divine Comedy because I was so ill in November, and it is a band that reminds me of very happy times, so it was a great evening out.
A friend comes to tea. The sun shines. There are yoga classes and a session with a personal trainer who takes my request for core work very seriously, but I'm pleased to discover I'm not as unfit as I thought. And the clock counts down the seconds for me.
So, nothing to be done but wait. Actually I'm surprisingly sanguine about it all, but this is because I've completely reconciled myself to the news being bad. After all, we have yet to have an appointment with the consultant that is good news. Pessimistic though this approach is, if I don't think this way I'm not sure I can take the knock if it isn't.
We keep busy, me and DH, pottering around the house, doing paperwork and gardening and planning our party that we're having in July just because we fancy a party. I go out to see Counting Crows, who appear to be trying to set a record for the most number of instruments played in one gig - there isn't a single song that doesn't involve a change of guitars for all three guitarists, a procedure that sends the ZZ Top lookalike roadies scurrying about like mad. It's the first gig I've been to where I'm sitting down, so now I know I'm properly old! But it's the first gig I've been to in ages, having had to miss The Divine Comedy because I was so ill in November, and it is a band that reminds me of very happy times, so it was a great evening out.
A friend comes to tea. The sun shines. There are yoga classes and a session with a personal trainer who takes my request for core work very seriously, but I'm pleased to discover I'm not as unfit as I thought. And the clock counts down the seconds for me.
Sunday 21 April 2013
Scanxiety
Tomorrow is it. The first scan. Thankfully the consultant is seeing me on Thursday so I don't have long to wait.
It's now that I want to ask questions about tumour grading and staging, long term prognosis, recurrence rates. They weren't so relevant when I was actively being treated - I placed my life in my oncologist's hands - but now I want to know what the chances are that this will get me in the end. That this will leave my two babies motherless and my husband all on his own. I want to cry just thinking about it, not for me but for them.
I am, however, on the train heading out to watch the London Marathon. Thousands of people running, millions of pounds raised for charities including cancer charities. One of my closest friends is running for Runners 4 Cancer, so me and lots of friends are cheering her on.
The sun is out, the sky is blue, the Boston Marathon bombers haven't stopped this party, and I ain't dead yet. So today I'll try to put it all to one side.
It's now that I want to ask questions about tumour grading and staging, long term prognosis, recurrence rates. They weren't so relevant when I was actively being treated - I placed my life in my oncologist's hands - but now I want to know what the chances are that this will get me in the end. That this will leave my two babies motherless and my husband all on his own. I want to cry just thinking about it, not for me but for them.
I am, however, on the train heading out to watch the London Marathon. Thousands of people running, millions of pounds raised for charities including cancer charities. One of my closest friends is running for Runners 4 Cancer, so me and lots of friends are cheering her on.
The sun is out, the sky is blue, the Boston Marathon bombers haven't stopped this party, and I ain't dead yet. So today I'll try to put it all to one side.
Friday 12 April 2013
Getting a grip on post-chemo life
No sense of abandonment has kicked in yet. Very quickly post-chemo my first scan appointment comes in, and the follow up, and the Macmillan nurse is in touch to arrange for some post-treatment support, so everyone is still there in my life at the moment. I guess I should get used to this for a few years to come.
It's my own expectations that are difficult. The last cycle was only 2 weeks ago so I shouldn't expect any improvement yet. But I do and it's frustrating. I'm still easily tired, still have reduced feeling in my hands and feet, still have pasty skin and tired eyes, still have insomnia and yet the mental elation at getting to the end of chemo, a point I've focused on as being a time to get on with stuff and move on, is driving me on to do more and more. Perhaps this will be a bigger battle, adjusting to life with the new, battered, me?
It's my own expectations that are difficult. The last cycle was only 2 weeks ago so I shouldn't expect any improvement yet. But I do and it's frustrating. I'm still easily tired, still have reduced feeling in my hands and feet, still have pasty skin and tired eyes, still have insomnia and yet the mental elation at getting to the end of chemo, a point I've focused on as being a time to get on with stuff and move on, is driving me on to do more and more. Perhaps this will be a bigger battle, adjusting to life with the new, battered, me?
Sunday 31 March 2013
Why finishing chemo is a bit like being pregnant
Because at the end, I have three bottles of champagne. One from my in-laws, who are staying for Easter. One from my ecstatic parents, who are so pleased the chemo is over that simply speaking on the phone is not enough and they turn up with flowers and champagne on Easter Saturday. And one from an equally ecstatic DH. No baby though, just DD who is delighted that the medicine is over (DS is too little, mentally anyway (!) to really understand the significance).
The celebrations are overcast by the news that a former colleague and good friend's mum sadly passed away from cancer on the very day I was finishing treatment. Her diagnosis was very late stage and the prognosis never good, and she leaves a husband, four children and a grandchild behind. Rest in peace, Mrs W.
For the survivors, however temporary that might be, there is champagne. We - DH and PILs and I - drink two bottles over Easter weekend. Here's to life for those that go on!
The celebrations are overcast by the news that a former colleague and good friend's mum sadly passed away from cancer on the very day I was finishing treatment. Her diagnosis was very late stage and the prognosis never good, and she leaves a husband, four children and a grandchild behind. Rest in peace, Mrs W.
For the survivors, however temporary that might be, there is champagne. We - DH and PILs and I - drink two bottles over Easter weekend. Here's to life for those that go on!
No Oxaliplatin - difference in side effects
No increase in pins and needles or numbness, not even temporarily.
Reduced gastric issues - I can eat normally from Day 1 when usually I need to move to "little and often" to prevent chronic indigestion.
Still tired, and the steroids screw up my sleep patterns, but not as tired as with the Oxi and Neulasta.. Hands and feet are still toxic but less so than normal.
I still feel connected to the outside world, whereas the Oxi tends to knock me out for a few days.
It's interesting to feel the difference, and the pump seems to empty much quicker - Oxi has clearly been the much harder drug on the system.
Reduced gastric issues - I can eat normally from Day 1 when usually I need to move to "little and often" to prevent chronic indigestion.
Still tired, and the steroids screw up my sleep patterns, but not as tired as with the Oxi and Neulasta.. Hands and feet are still toxic but less so than normal.
I still feel connected to the outside world, whereas the Oxi tends to knock me out for a few days.
It's interesting to feel the difference, and the pump seems to empty much quicker - Oxi has clearly been the much harder drug on the system.
The beginning of the end
We made it. Cycle 11 of 11 is in. It's all over.
Slightly moderated this time as the onco is concerned that the numbness in my feet and hands is not recovering between cycles and that cycle 10 seemed to be that bit harder to take. As she points out, not only did I get a massive blast of Oxaliplatin back at the start, when I was on the 3 week cycle for 2 cycles, but the Scott trial is having some success with only doing 4 x 3 week cycles of the "traditional" version. Also this is a belt and braces treatment, preventative rather than curative. Whilst I'm not persuaded by the last point, the first two are more persuasive and I am now getting concerned that the neuropathy will be permanent. So we agree that it is 5FU only this time around. The real bonus is no Neulasta bone marrow booster jab as whilst my platelets are borderline, my white blood cell count is up so no need for the evil stomach jab.
She spends a chunk of time with me and DH today, answering questions and explaining what comes next. No, this isn't a hormone driven cancer. No, there is no evidence to suggest that I could have passed anything to DS whilst in utero (as the polyps are slow growing it is possible they were growing whilst I was pregnant with him, plus I can't remember when the blood in my stools first appeared). Both DD and DS should request screening on the basis of family risk 10 years in advance of my diagnosis age as, whilst this has all the signs of just being an unfortunate quirk of fate and not genetic, their risk is now higher. All the precautions for immuno-compromise need to be followed for 4 more weeks. Ditto condoms, whilst the last of the drugs leave my system. No more Zoladex, as the last jab will see me through to more than a month post chemo. There will be another scan and set of bloods in 3-4 weeks, then it's on to the monitoring and maintenance regime of scans every 6 months, bloods every 3 months, another colonoscopy later this year, with the gaps gradually lengthening until the 5 year all clear. The portacath can come out after the first scan (my choice, I want to know I don't need it any more). She also understands that actually, this is the scary part. No one's watching me every 2 weeks any more. The cancer could come back and how would I know? As I've mentioned before, the survival rates are not wholly on my side here and whilst I have every intention of doing everything I can to avoid the cancer returning (whilst still having a life, not an existence) it still might come back. She offers to get the Macmillan nurse to call me in a couple of weeks - she's on holiday - which both DH and I agree to; we're also exploring some counselling available via my employers' Employee Assistance Programme, although this seems to be a bit slow in coming. But at least it's all there for us. Both of us finish the consultation feeling thoroughly positive about the future.
The drug reduction doesn't mean a quick get away today. There are still steroids and calcium and flushes and the first dose of 5FU to get in, so DH goes off shopping and for lunch. After he gets back I notice that the sight in my right eye has blurred and a band of it looks as though I'm viewing the world through a kaleidoscope. It doesn't clear up quickly, so I push the call bell. Having told the HCA what's going on, suddenly the room is filled with nurses clipping off lines and checking my vital signs. I half expect the bed to be flattened and me carted off down the hall somewhere in true hospital drama style. Things calm down considerably when someone points out that I may indeed be experiencing blurred vision but it's not likely to be chemo related as I haven't had any today! Honestly, I get through 7 months without having a critical adverse reaction and the day it seems I have, actually I haven't. My vision clears up and everyone relaxes.
It's sad to go home. The team have been marvellous - smiling, happy, supportive, concerned. Chatty when we need it, holding hands when it's been tough. The mugs I've painted for them and the hot cross buns don't feel like enough to say thank you. Unfortunately, owing to running a double clinic (avoiding Good Friday) and holidays, most of the people I want to say goodbye to aren't on the ward. And I hope, lovely though they are, that it is goodbye. Because the first step out of the hospital doors today, pump and all, felt like a new day and a new life.
Slightly moderated this time as the onco is concerned that the numbness in my feet and hands is not recovering between cycles and that cycle 10 seemed to be that bit harder to take. As she points out, not only did I get a massive blast of Oxaliplatin back at the start, when I was on the 3 week cycle for 2 cycles, but the Scott trial is having some success with only doing 4 x 3 week cycles of the "traditional" version. Also this is a belt and braces treatment, preventative rather than curative. Whilst I'm not persuaded by the last point, the first two are more persuasive and I am now getting concerned that the neuropathy will be permanent. So we agree that it is 5FU only this time around. The real bonus is no Neulasta bone marrow booster jab as whilst my platelets are borderline, my white blood cell count is up so no need for the evil stomach jab.
She spends a chunk of time with me and DH today, answering questions and explaining what comes next. No, this isn't a hormone driven cancer. No, there is no evidence to suggest that I could have passed anything to DS whilst in utero (as the polyps are slow growing it is possible they were growing whilst I was pregnant with him, plus I can't remember when the blood in my stools first appeared). Both DD and DS should request screening on the basis of family risk 10 years in advance of my diagnosis age as, whilst this has all the signs of just being an unfortunate quirk of fate and not genetic, their risk is now higher. All the precautions for immuno-compromise need to be followed for 4 more weeks. Ditto condoms, whilst the last of the drugs leave my system. No more Zoladex, as the last jab will see me through to more than a month post chemo. There will be another scan and set of bloods in 3-4 weeks, then it's on to the monitoring and maintenance regime of scans every 6 months, bloods every 3 months, another colonoscopy later this year, with the gaps gradually lengthening until the 5 year all clear. The portacath can come out after the first scan (my choice, I want to know I don't need it any more). She also understands that actually, this is the scary part. No one's watching me every 2 weeks any more. The cancer could come back and how would I know? As I've mentioned before, the survival rates are not wholly on my side here and whilst I have every intention of doing everything I can to avoid the cancer returning (whilst still having a life, not an existence) it still might come back. She offers to get the Macmillan nurse to call me in a couple of weeks - she's on holiday - which both DH and I agree to; we're also exploring some counselling available via my employers' Employee Assistance Programme, although this seems to be a bit slow in coming. But at least it's all there for us. Both of us finish the consultation feeling thoroughly positive about the future.
The drug reduction doesn't mean a quick get away today. There are still steroids and calcium and flushes and the first dose of 5FU to get in, so DH goes off shopping and for lunch. After he gets back I notice that the sight in my right eye has blurred and a band of it looks as though I'm viewing the world through a kaleidoscope. It doesn't clear up quickly, so I push the call bell. Having told the HCA what's going on, suddenly the room is filled with nurses clipping off lines and checking my vital signs. I half expect the bed to be flattened and me carted off down the hall somewhere in true hospital drama style. Things calm down considerably when someone points out that I may indeed be experiencing blurred vision but it's not likely to be chemo related as I haven't had any today! Honestly, I get through 7 months without having a critical adverse reaction and the day it seems I have, actually I haven't. My vision clears up and everyone relaxes.
It's sad to go home. The team have been marvellous - smiling, happy, supportive, concerned. Chatty when we need it, holding hands when it's been tough. The mugs I've painted for them and the hot cross buns don't feel like enough to say thank you. Unfortunately, owing to running a double clinic (avoiding Good Friday) and holidays, most of the people I want to say goodbye to aren't on the ward. And I hope, lovely though they are, that it is goodbye. Because the first step out of the hospital doors today, pump and all, felt like a new day and a new life.
Thursday 21 March 2013
Sleep
Sleep feels jumbled now. The long smooth curves of an ordinary night have been replaced by lumps of unconsciousness so deep it feels like you can only emerge with the aid of a lifebelt, interspersed with paddling around on the surface unable to strike a rhythm. It's not restful, but it is what happens and it leaves my body scrabbling for more in the middle of the day. My eyes close anywhere and everywhere - seated, standing, church, swimming class as I wait for DD. And there's nothing I can do about it other than be patient for the long smooth night in cotton sheets, from which I will awake feeling rested and new. Now I'm so close to the end, this nirvana is tantalisingly near.
Thursday 14 March 2013
And five...
Back to hospital again and yet again we are good to go. I'm very surprised as I had a cold last week and there are clear signs my body is finding this tough. Sweet and cold things are now agony on my teeth (the mouthwash lives next to the radiator). I'm developing odd cysts and spots, which are apparently normal. And not only has the feeling in my heels gone, but my index fingers and thumbs are following suit. The consultant is concerned, but is willing to continue all treatment if I am. As it's not so severe it compromises daily life, we agree to give it one more cycle.
My Mum and Dad were the transport in today, and they stayed and chatted all day which was lovely. Something different to break up the day, and they got to see the unit and meet everyone which I think helps them a bit, too - context, if you like.
The end of the tunnel is in sight. Only one more cycle to go.
My Mum and Dad were the transport in today, and they stayed and chatted all day which was lovely. Something different to break up the day, and they got to see the unit and meet everyone which I think helps them a bit, too - context, if you like.
The end of the tunnel is in sight. Only one more cycle to go.
Curcumin
I've said before that I'm not going down the supplements route as I'm not wholly convinced by the science yet. But I'm happy to include turmeric and curcumin in my diet where appropriate - I love Indian cooking so there's plenty of scope.
But when I came to make DS's birthday jelly, on a sea theme to go with his pirate ship cake, I happened to glance at the ingredients list on the back of the packet of jelly sharks/turtles/starfish that we're going in it. One of the colourings used by The Natural Sweet Company is curcumin. Result! As Molesworth would say, "Bash on the wine gums!".
But when I came to make DS's birthday jelly, on a sea theme to go with his pirate ship cake, I happened to glance at the ingredients list on the back of the packet of jelly sharks/turtles/starfish that we're going in it. One of the colourings used by The Natural Sweet Company is curcumin. Result! As Molesworth would say, "Bash on the wine gums!".
Sunday 3 March 2013
Four in a row!
Whoop whoop! Back again for cycle 9, fully expecting to go home again. But no, I seem to have stabilised my bloods, albeit at the bottom of what's acceptable (must be Mum's platelet soup, she should sell that to a pharma giant), so in goes cycle 9. The consultant's concerns are focused on the numbness now, which is pretty permanent in the surface of my hands and my fingertips, so she's still threatening to withdraw the Oxaliplatin in order to avoid it becoming actually permanent as opposed to long term but repairable.
But two more cycles to go! I can't believe we're so close to the end and just might, just might, be done by Easter. Here's hoping...
But two more cycles to go! I can't believe we're so close to the end and just might, just might, be done by Easter. Here's hoping...
Never Google....
Sometimes I really should take my own advice, idiot that I am. How many people have I told not to Google? That it's inaccurate, unhelpful, scary. For goodness' sake, I've done it myself and scared myself silly in the early days so you'd think I'd know better.
But I got curious. As I'm now down to the last two cycles of chemo my thoughts are turning more towards what happens next and how I live the rest of my life without this dominating my every waking moment. And most of all, how I live with not knowing whether it has come back or not. Whether there's some rogue cells still drifting around waiting to take root, or another polyp slowly growing in what's left of my bowel. How I live with that anxiety every day. I should explain that I have form for anxiety related depression and had counselling for it ten years ago, but nothing that could prepare me for this.
So, rather than waiting to take the step of seeking out some counselling first (which I will do anyway; DH has agreed to some too - after all, it's not just me that has to live with this), I Google the five year survival rates. First hit is the Cancer Research UK page, so at least I'm looking at a reliable site. Wish I wasn't. Stage 3 bowel cancer 5 year survival rates 2004-2009: 47.7%. You can tell me what you like, but those aren't odds I like unless they're on a racehorse.
I haven't really shared the numbers with anyone, although I did mention it to my Mum (who told me off for Googling :-) ). Time to call in the counselling cavalry methinks. But where to start?
But I got curious. As I'm now down to the last two cycles of chemo my thoughts are turning more towards what happens next and how I live the rest of my life without this dominating my every waking moment. And most of all, how I live with not knowing whether it has come back or not. Whether there's some rogue cells still drifting around waiting to take root, or another polyp slowly growing in what's left of my bowel. How I live with that anxiety every day. I should explain that I have form for anxiety related depression and had counselling for it ten years ago, but nothing that could prepare me for this.
So, rather than waiting to take the step of seeking out some counselling first (which I will do anyway; DH has agreed to some too - after all, it's not just me that has to live with this), I Google the five year survival rates. First hit is the Cancer Research UK page, so at least I'm looking at a reliable site. Wish I wasn't. Stage 3 bowel cancer 5 year survival rates 2004-2009: 47.7%. You can tell me what you like, but those aren't odds I like unless they're on a racehorse.
I haven't really shared the numbers with anyone, although I did mention it to my Mum (who told me off for Googling :-) ). Time to call in the counselling cavalry methinks. But where to start?
Thursday 21 February 2013
Half Term and Half Truths
This cycle coincides with half term week, so the weekend runs as usual with interruptions for chemo bottle removal and Neulasta jabs. As an aside, I found out this week that my Zoladex jab costs the NHS £225 ish (excluding the anaesthetic cream that I now regard as a "must") a pop and the Neulasta around £800 a go. Suddenly the NHS budget issue makes sense.
Anyway, half term week means different activities including a long planned trip to London with TN and the children. Monday presents a dilemma: do I go or not? I really, really want to go. The weather is glorious and everyone is excited. I tell DH I will be fine and I am coming. He tells me, bluntly, I am not. He will spend the whole day worrying about me and that's not fair on anyone else. The bravado goes out of me instantly - he's right, it's not fair. I can get out of bed and do basic stuff like washing, but a day traipsing round London is beyond me. Part of the problem is the feeling has gone in my heels completely now and I'm not sure how far I can walk. Time to stop lying to myself and being selfish. They leave, without me, and I go back to bed. The rest of the day is spent doing small stuff, watching The Killing 2 (can't be done with kids in the house) and wishing I was outside with them. When they get home they've all had a lovely time, which makes me feel better and worse.
Anyway, half term week means different activities including a long planned trip to London with TN and the children. Monday presents a dilemma: do I go or not? I really, really want to go. The weather is glorious and everyone is excited. I tell DH I will be fine and I am coming. He tells me, bluntly, I am not. He will spend the whole day worrying about me and that's not fair on anyone else. The bravado goes out of me instantly - he's right, it's not fair. I can get out of bed and do basic stuff like washing, but a day traipsing round London is beyond me. Part of the problem is the feeling has gone in my heels completely now and I'm not sure how far I can walk. Time to stop lying to myself and being selfish. They leave, without me, and I go back to bed. The rest of the day is spent doing small stuff, watching The Killing 2 (can't be done with kids in the house) and wishing I was outside with them. When they get home they've all had a lovely time, which makes me feel better and worse.
Three... Is The Magic Number
It is a truth, universally acknowledged, that we will not get three chemo cycles in in a row. Ever. No-one had this much trouble with blood since Lady Macbeth had a regicide-related nocturnal hygiene issue.
Based on this rule, DH and I set off for the hospital this time armed with nothing to while away the long hours. Because we will be going home again. This isn't a completely cavalier attitude: it's my platelets that are going wonky and I'm covered in large, purple, unexplained bruises, particularly on my legs which is a pretty good sign that my platelets are low. I also found the last round of chemo quite tough and two weeks never seems to be enough recovery time.
In, bloods done, DH and I settle down to wait. The doctor appears but doesn't have the bloods (it's rather nice to know that she actually comes to check how I am anyway, and not just as part of the chemo process) so sends the Macmillan nurse off to get them. The printout is in colour and about half of the read outs are red - I am so going home. Except I'm not. The results show a body under the strain of chemo, with poor platelet, white blood cell and liver function levels, but just within tolerance. There's something illogical about being pleased that I can have something that is going to make me feel so rubbish, and I'm a bit scared that this cycle will be more than I can take, but we're still on track.
DH goes shopping with the list I'd prepared for the inevitable send home. I play on my phone and watch bad TV and snooze, but not before texting my Mum to let her know that her platelet soup has worked - she Googled, in contravention of all family guidelines, and decided I needed tomato soup to boost the blood. DH comes back to find me dribbling gently into my collar. Nice!
Based on this rule, DH and I set off for the hospital this time armed with nothing to while away the long hours. Because we will be going home again. This isn't a completely cavalier attitude: it's my platelets that are going wonky and I'm covered in large, purple, unexplained bruises, particularly on my legs which is a pretty good sign that my platelets are low. I also found the last round of chemo quite tough and two weeks never seems to be enough recovery time.
In, bloods done, DH and I settle down to wait. The doctor appears but doesn't have the bloods (it's rather nice to know that she actually comes to check how I am anyway, and not just as part of the chemo process) so sends the Macmillan nurse off to get them. The printout is in colour and about half of the read outs are red - I am so going home. Except I'm not. The results show a body under the strain of chemo, with poor platelet, white blood cell and liver function levels, but just within tolerance. There's something illogical about being pleased that I can have something that is going to make me feel so rubbish, and I'm a bit scared that this cycle will be more than I can take, but we're still on track.
DH goes shopping with the list I'd prepared for the inevitable send home. I play on my phone and watch bad TV and snooze, but not before texting my Mum to let her know that her platelet soup has worked - she Googled, in contravention of all family guidelines, and decided I needed tomato soup to boost the blood. DH comes back to find me dribbling gently into my collar. Nice!
Thursday 14 February 2013
Photos!
At last I've figured out how to get this photo thingy to work. So please find attached a picture of what looks like a small dog but is in fact about a third of the hair that was removed for my chemo cut, and my festive portacath decorations. Better do some hearts for Valentine's tomorrow.
Faites Vous Jeux
This morning should be Cycle 8. With borderline platelets at Cycle 7, neither DH nor I are preparing for a long hospital visit. Place your bets please, ladies and gentlemen...
Things Not To Ask A Cancer Patient
I need a new sick note and some Laxido, so off I toddle to the GP. My diagnosing GP is not available so I take whoever's available as this is a bit of a no-brainer.
The surgery waiting room is full when I get there. It's even fuller when I finally get in, an hour late. The GP is full of apologies looks thoroughly stressed and doesn't have my notes on screen. I explain what I'm after. "And what do you usually put on your sick notes?" she asks.
"Chemotherapy for bowel cancer usually does the trick."
The poor woman is mortified that she didn't know and yet again I witness the shift in attitude towards cancer patients, where time is taken just to check how you are, treating the person and not the symptoms. It must be quite nice to do that, as a GP. But I'm conscious of her time and the consultation ends in a very English flurry of apologies (her) and please don't worry about its (me).
The surgery waiting room is full when I get there. It's even fuller when I finally get in, an hour late. The GP is full of apologies looks thoroughly stressed and doesn't have my notes on screen. I explain what I'm after. "And what do you usually put on your sick notes?" she asks.
"Chemotherapy for bowel cancer usually does the trick."
The poor woman is mortified that she didn't know and yet again I witness the shift in attitude towards cancer patients, where time is taken just to check how you are, treating the person and not the symptoms. It must be quite nice to do that, as a GP. But I'm conscious of her time and the consultation ends in a very English flurry of apologies (her) and please don't worry about its (me).
Ghostbusters
Sunday night is agony. All day I've felt like I've either got cystitis or thrush, and then Sunday night my body settles on cystitis. Fortunately this distracts me from the fact that I've been seeing blood when I wipe after a poo. I'm trying to keep calm about this and not jump to conclusions but it has crystallised for me the realisation that I'm terrified of the cancer coming back. The swagger and bravado are a thinner veneer than I thought.
Anyway, peeing razor blades every five minutes definitely keeps me sidetracked for a while. Around 5 a.m., pottering around the kitchen making my umpteenth fruit tea to try and flush it out, I check the red book they gave me at the hospital to record chemo cycles. It also has a useful red/amber/green chart of when any side effects require intervention and what that intervention might be. Right there, in big letters, it says if you experience any of X symptoms then phone the hospital as you may need antibiotics within an hour. X includes pain when peeing.
I have been trying to decide who to call in the morning but this seals it. I ring duty matron, apologising profusely for the anti-social hour. She is completely relaxed, and tells me to ring the unit in the morning. Which I do. They haul me in and the RMO gives me anti-biotics. No panic, no fuss, no urgent iv anti-bs. I'm left wondering why I bothered. I know they see this every day, but why alarm patients with the booklet and put unnecessary strain on the system? I'd have waited until morning otherwise.
All bleeding and pain has now stopped, thankfully. Next time I might call Ghostbusters.
Anyway, peeing razor blades every five minutes definitely keeps me sidetracked for a while. Around 5 a.m., pottering around the kitchen making my umpteenth fruit tea to try and flush it out, I check the red book they gave me at the hospital to record chemo cycles. It also has a useful red/amber/green chart of when any side effects require intervention and what that intervention might be. Right there, in big letters, it says if you experience any of X symptoms then phone the hospital as you may need antibiotics within an hour. X includes pain when peeing.
I have been trying to decide who to call in the morning but this seals it. I ring duty matron, apologising profusely for the anti-social hour. She is completely relaxed, and tells me to ring the unit in the morning. Which I do. They haul me in and the RMO gives me anti-biotics. No panic, no fuss, no urgent iv anti-bs. I'm left wondering why I bothered. I know they see this every day, but why alarm patients with the booklet and put unnecessary strain on the system? I'd have waited until morning otherwise.
All bleeding and pain has now stopped, thankfully. Next time I might call Ghostbusters.
Wednesday 6 February 2013
Side Effects: Part 2
My earlier post on side effects seems a bit dated now, so here is the revised version. In no particular order:
1) Sore feet, and sometimes hands. This is apparently due to the toxins working their way out and can range from the mildly annoying to the outright painful, especially if I walk a lot. Creams help, as the skin gets very cracked - I'm told that udder cream is really good if the problem is acute.
2) Sore mouth and throat. My gums have receded and the inside of my lips feels raw, like they've been sandpapered. Very occasionally swallowing requires a bit of thought, or I feel like I've a cold coming. Lots of fluids and lip balm work best.
3) Thin skin. In the second half of the cycle my skin definitely seems thinner and I get a good outbreak of whitehead spots on my forehead. Fortunately the new hair cut covers them because picking them is a no-no - it makes them last for weeks and the reduced platelets mean bleeding is not allowed.
4) Peripheral neuropathy. Now omnipresent and hard to predict, rather than acute as it was before. So no more cat's bum faces when cleaning my teeth, but my eyes will tic shut in the cold at any time during a cycle.
5) Tiredness. Not exhaustion, but a constant background lack of energy.
6) Brain fade. I still can't think my way out of a paper bag.
Less like pregnancy, now. More like chemo.
1) Sore feet, and sometimes hands. This is apparently due to the toxins working their way out and can range from the mildly annoying to the outright painful, especially if I walk a lot. Creams help, as the skin gets very cracked - I'm told that udder cream is really good if the problem is acute.
2) Sore mouth and throat. My gums have receded and the inside of my lips feels raw, like they've been sandpapered. Very occasionally swallowing requires a bit of thought, or I feel like I've a cold coming. Lots of fluids and lip balm work best.
3) Thin skin. In the second half of the cycle my skin definitely seems thinner and I get a good outbreak of whitehead spots on my forehead. Fortunately the new hair cut covers them because picking them is a no-no - it makes them last for weeks and the reduced platelets mean bleeding is not allowed.
4) Peripheral neuropathy. Now omnipresent and hard to predict, rather than acute as it was before. So no more cat's bum faces when cleaning my teeth, but my eyes will tic shut in the cold at any time during a cycle.
5) Tiredness. Not exhaustion, but a constant background lack of energy.
6) Brain fade. I still can't think my way out of a paper bag.
Less like pregnancy, now. More like chemo.
Day 5
I've decided that Day 5 of any cycle is the worst. Deciding this at 03:17 may have something to do with the decision. That and it's pouring with wintery, ice filled rain outside, and DS has a cold which means he wakes up a lot, and my house has a bridged damp course that needs fixing, and I've put on 3 kilos since November and that generally I'm in a rotten mood.
What makes Day 5 worse? It seems to be the pinnacle of toxicity for body and mind. Day 0 I have my chemo. Day 2 the pump comes off. Day 3 I have the bone jab (Neulasta). Day 5 I exist in a parallel universe. My mind isn't connected to me or the world around me and frankly all I want to do is curl up in a ball but instead what I do is chase my tail, wandering round the house believing that I should be doing something but not sure what, and when I do have something to do I either can't process it or it takes four times as long as it should. Which leaves way too much time for me to think random thoughts. Particularly negative at the moment are the ones about my weight. Barring pregnancy, I haven't put on more than a pound or two in years. Pre-cancer, I walked, cycled or ran everywhere I could. Now, sat at home without much energy to go out and struggling with the effects of the cold when I do, I feel like a blob. DH is reassuring that this will pass and soon treatment will be over and I can get moving again. I know he's right. I know plenty of chemo patients struggle with their weight. I know now is not the time to be worrying about this. But in a time when every other standard of my life is out the window, I need something to cling onto and I haven't found it yet. Unfortunately, I'll probably despise myself a little more until I do.
What makes Day 5 worse? It seems to be the pinnacle of toxicity for body and mind. Day 0 I have my chemo. Day 2 the pump comes off. Day 3 I have the bone jab (Neulasta). Day 5 I exist in a parallel universe. My mind isn't connected to me or the world around me and frankly all I want to do is curl up in a ball but instead what I do is chase my tail, wandering round the house believing that I should be doing something but not sure what, and when I do have something to do I either can't process it or it takes four times as long as it should. Which leaves way too much time for me to think random thoughts. Particularly negative at the moment are the ones about my weight. Barring pregnancy, I haven't put on more than a pound or two in years. Pre-cancer, I walked, cycled or ran everywhere I could. Now, sat at home without much energy to go out and struggling with the effects of the cold when I do, I feel like a blob. DH is reassuring that this will pass and soon treatment will be over and I can get moving again. I know he's right. I know plenty of chemo patients struggle with their weight. I know now is not the time to be worrying about this. But in a time when every other standard of my life is out the window, I need something to cling onto and I haven't found it yet. Unfortunately, I'll probably despise myself a little more until I do.
Saturday 2 February 2013
And Thursday makes 7
Another cycle starts. The oncologist, bless her, has now taken to opening her discussions with me with a hasty "How are you?" followed immediately by the report on my bloods. Fortunately this week the neutrophils are fine but the platelets are on the borderline, so I guess next cycle will be a knock back again. It will be easier as I'm mentally prepared for it I think. "You're not making this easy for us you know", says the oncologist with a smile. I'm not doing it on purpose, honest!
Again, I felt ok in the last two weeks. I'm trying to get outside a bit more now that I no longer have to wrap up every exposed bit of flesh. The cold definitely affects my nose, which can be very painful if I'm outside and is full of scabs from little bleeds. Nothing drastic, I'm not even aware of them happening, just that I have a clogged up nose.
I had to have "the conversation" with two more close friends this week. One I hadn't told because she was in the middle of the end of an horrendous court case (she was the victim of a very unpleasant assault) when I was diagnosed and somehow the subject hadn't really fit into the conversation since - it gets harder to raise the longer you leave it. The other I just hadn't spoken to for a while. Both gutted for us but both upbeat and positive, and still taking the piss out of me, which is the most important thing.
I have now got this working on my iPhone, so there may be a few photos to add. Watch this space!
Again, I felt ok in the last two weeks. I'm trying to get outside a bit more now that I no longer have to wrap up every exposed bit of flesh. The cold definitely affects my nose, which can be very painful if I'm outside and is full of scabs from little bleeds. Nothing drastic, I'm not even aware of them happening, just that I have a clogged up nose.
I had to have "the conversation" with two more close friends this week. One I hadn't told because she was in the middle of the end of an horrendous court case (she was the victim of a very unpleasant assault) when I was diagnosed and somehow the subject hadn't really fit into the conversation since - it gets harder to raise the longer you leave it. The other I just hadn't spoken to for a while. Both gutted for us but both upbeat and positive, and still taking the piss out of me, which is the most important thing.
I have now got this working on my iPhone, so there may be a few photos to add. Watch this space!
Friday 18 January 2013
Cycle 6: Hi Ho, Hi Ho, It's Off For Chemo We Go
And it's in! Despite another busy week that includes a birthday party for DD with six of her classmates and two younger siblings aged around three (there were also seven adults: me, TN, one of the mums (Q, in fact, whose DH had bowel cancer), my parents and my little brother and his girlfriend. Little bro is a policeman and off to do riot training next week, so surely this is a walk in the park? Anyway, DD had a marvellous time on her birthday and liked the cake that it had taken until 11pm the previous night to ice. Note to self: do not ask her next year what cake she wants. Tell her she wants a round cake with minimal decoration, not a cake that requires making sugar paste versions of school uniform. In the icing chaos I forgot to wrap 30% of her Christmas presents but she didn't seem to mind me running around wrapping them two minutes before she opened them. Our Cornwall weekend wasn't exactly restful either, seeing pirate ships in Charlestown, going to the Eden Project and flying kites on the beach at Pentewan as well as going out for dinner with DH (who ate everything on the menu that was out of bounds for me, charming) and seeing old friends. Old as in I've known them for nearly 20 years and DH even longer. Not restful, but soul tonic definitely.
So I was expecting, despite reflexology yesterday, another knock back. But neutrophils are reducing and platelets right back up so we can get on with this. The oncologist says there's nothing to be done on this one, that there are some drugs being trialled in the US that may help but they are not yet licensed for use, so we just have to go with this one.
DH works all day, drafting documents, and I try to get through the last of "The Killing" but keep dozing off. Fortunately the access needle, a new version that comes in fetching purple (to co-ordinate with the pink portacath?), creaks like mad and wakes me up. One of nurses talks me through the take out procedure for this new version so I can pass it on to the district nurses on Saturday so they are not completely freaked out and/or refuse to do it - apparently the latest round of NHS cutbacks includes a reduction in district nurse provision so they will not do home visits for patients who are able to travel to the surgery. That's fine, if you have transport. Some don't.
DH redeems himself after commenting that I am old, cheeky so-and-so, by returning from his lunch break with the most gorgeous (and large) chocolate brownie. I stuff it down before the non-eating kicks in again, completely ignoring the fact that I have put on two and a half kilos in three weeks. Now the chemo is in, that'll come off as I really can't eat massive meals for the first five days or so, grazing instead. The reflexologist recommended lots of protein to help ensure my body has lots around for cell formation, so I'll see what I can do.
Home. Exhaustion. Ghastly glutamine powder, which I am trying to find a good carrier agent for that isn't as sweet as Lucozade. Cranston's Apple and Ginger beer works well, FeelGood's non-alcoholic Mojito mix not so good but feels incredibly naughty. Between that and the Movicol, which has to be taken in water, it's not surprising I don't want to eat as my stomach's so full of fluid.
By bedtime I look so rubbish DH is in tears for the first time in ages. My turn to try and boost him up with hugs and reassurances that we are over halfway, that this will pass. Doesn't stop it being hard on the ones you love though.
So I was expecting, despite reflexology yesterday, another knock back. But neutrophils are reducing and platelets right back up so we can get on with this. The oncologist says there's nothing to be done on this one, that there are some drugs being trialled in the US that may help but they are not yet licensed for use, so we just have to go with this one.
DH works all day, drafting documents, and I try to get through the last of "The Killing" but keep dozing off. Fortunately the access needle, a new version that comes in fetching purple (to co-ordinate with the pink portacath?), creaks like mad and wakes me up. One of nurses talks me through the take out procedure for this new version so I can pass it on to the district nurses on Saturday so they are not completely freaked out and/or refuse to do it - apparently the latest round of NHS cutbacks includes a reduction in district nurse provision so they will not do home visits for patients who are able to travel to the surgery. That's fine, if you have transport. Some don't.
DH redeems himself after commenting that I am old, cheeky so-and-so, by returning from his lunch break with the most gorgeous (and large) chocolate brownie. I stuff it down before the non-eating kicks in again, completely ignoring the fact that I have put on two and a half kilos in three weeks. Now the chemo is in, that'll come off as I really can't eat massive meals for the first five days or so, grazing instead. The reflexologist recommended lots of protein to help ensure my body has lots around for cell formation, so I'll see what I can do.
Home. Exhaustion. Ghastly glutamine powder, which I am trying to find a good carrier agent for that isn't as sweet as Lucozade. Cranston's Apple and Ginger beer works well, FeelGood's non-alcoholic Mojito mix not so good but feels incredibly naughty. Between that and the Movicol, which has to be taken in water, it's not surprising I don't want to eat as my stomach's so full of fluid.
By bedtime I look so rubbish DH is in tears for the first time in ages. My turn to try and boost him up with hugs and reassurances that we are over halfway, that this will pass. Doesn't stop it being hard on the ones you love though.
Sunday 13 January 2013
Still here
Last week wasn't all doom and gloom. Quite the opposite in fact, which is part of the reason I was so frustrated on Thursday - I felt pretty well last week. Even my text-hugging friend commented on how well I looked when I texted her to express my disappointment/swear extensively about the no go on Thursday.
So well, in fact, that I had a day trip to the office. The main purpose was to say goodbye to a colleague who is heading back to Australia after a long stay in the UK; I can't make her drinks so was intending to have lunch with her. The secondary purpose was to say hello to the rest of the gang and also to my new boss.
I got there at around 10 o'clock and eventually had to leave at 1 o'clock without saying hello to everyone I wanted to see, because there were so many people to chat to, so much to catch up on. It was a good boost for me that a) the place is still there, b) people still remember who I am and c) they genuinely seemed to miss me! I also got to meet the new boss (poor chap, it was only Day 2 for him, I think I was the latest in a long line of shocks!) who took one look at me and my portacath (which is pretty obvious as it is right by my collar bone) and said, "I've had one of those". So in addition to him seeming to be a nice person, it sounds like he has a bit of insight into cancer, or at the very least a long term medicated condition - that should help.
On the way back I stop by to see my text-hugging friend, who is now back at work part-time and staying that way. She is looking well, but clearly still feeling the side effects of the chemo more than six months after it finished - apparently she was nearly dozing off at her desk. Then I found out she was trying to read contracts. That induces somnia in the hardiest so maybe there's hope.
So well, in fact, that I had a day trip to the office. The main purpose was to say goodbye to a colleague who is heading back to Australia after a long stay in the UK; I can't make her drinks so was intending to have lunch with her. The secondary purpose was to say hello to the rest of the gang and also to my new boss.
I got there at around 10 o'clock and eventually had to leave at 1 o'clock without saying hello to everyone I wanted to see, because there were so many people to chat to, so much to catch up on. It was a good boost for me that a) the place is still there, b) people still remember who I am and c) they genuinely seemed to miss me! I also got to meet the new boss (poor chap, it was only Day 2 for him, I think I was the latest in a long line of shocks!) who took one look at me and my portacath (which is pretty obvious as it is right by my collar bone) and said, "I've had one of those". So in addition to him seeming to be a nice person, it sounds like he has a bit of insight into cancer, or at the very least a long term medicated condition - that should help.
On the way back I stop by to see my text-hugging friend, who is now back at work part-time and staying that way. She is looking well, but clearly still feeling the side effects of the chemo more than six months after it finished - apparently she was nearly dozing off at her desk. Then I found out she was trying to read contracts. That induces somnia in the hardiest so maybe there's hope.
From Anger to Frustration
Thursday was supposed to be hump day. Cycle 6 of 11 (we think - even the oncologist seems confused as to how many cycles following the changes to the regime), but halfway by everyone's calculations. New year, new start, new hope that there's a light at the end of the tunnel.
Except it was a "no go". My neutrophils are way up at 172 and my platelets are way down at 50; both readings are outside the chemo protocol. The neutrophils are easily explained as I have the tail end of this virus that both children have had, although it didn't seem to cause a problem with the 27 December cycle and I had it then, too. Platelets? Who knows?
The oncologist has given up trying to convince me that my apparent sensitivity to the drugs is a good thing. Now she is talking about withdrawing the Oxaliplatin altogether because lowering the dose much more takes it beyond the effective point. I really don't want that to happen, I want to get this evil stuff into me and killing off the last of these cancer cells, wherever they are hiding. I'm quite happy to put myself through more to achieve that as I seem to have got off relatively lightly on the side effect front since cycle 2, but I can't do anything (seemingly) about these wretched bloods. Rest, rest and more rest seems to be the only prescription but I'm pretty sure if I do any less I will atrophy completely. And having little treats of days out, or spending a bit of time with my children that's not the frenzied beginning/end of day, these are the things that get me through. Maybe I just have to suck up sitting on my behind for three more months? It's not long in the scheme of things, is it?
So, back again on Thursday. I rearrange my diary (haircut and lunch, dahling, so very yummy mummy!) and call off the district nursing team. DH has the perfect way to deal with my disappointment: the trip to Cornwall we were planning for next weekend will simply happen this weekend. So once home we chuck stuff in the suitcase, notify school that the date of DD's unauthorised absence has changed, load the car, give TN the Friday off, pop the children in pyjamas and head west. I'm a West Country girl by birth and somehow the sight of the A 303 lifts my spirits. I'm going home.
Except it was a "no go". My neutrophils are way up at 172 and my platelets are way down at 50; both readings are outside the chemo protocol. The neutrophils are easily explained as I have the tail end of this virus that both children have had, although it didn't seem to cause a problem with the 27 December cycle and I had it then, too. Platelets? Who knows?
The oncologist has given up trying to convince me that my apparent sensitivity to the drugs is a good thing. Now she is talking about withdrawing the Oxaliplatin altogether because lowering the dose much more takes it beyond the effective point. I really don't want that to happen, I want to get this evil stuff into me and killing off the last of these cancer cells, wherever they are hiding. I'm quite happy to put myself through more to achieve that as I seem to have got off relatively lightly on the side effect front since cycle 2, but I can't do anything (seemingly) about these wretched bloods. Rest, rest and more rest seems to be the only prescription but I'm pretty sure if I do any less I will atrophy completely. And having little treats of days out, or spending a bit of time with my children that's not the frenzied beginning/end of day, these are the things that get me through. Maybe I just have to suck up sitting on my behind for three more months? It's not long in the scheme of things, is it?
So, back again on Thursday. I rearrange my diary (haircut and lunch, dahling, so very yummy mummy!) and call off the district nursing team. DH has the perfect way to deal with my disappointment: the trip to Cornwall we were planning for next weekend will simply happen this weekend. So once home we chuck stuff in the suitcase, notify school that the date of DD's unauthorised absence has changed, load the car, give TN the Friday off, pop the children in pyjamas and head west. I'm a West Country girl by birth and somehow the sight of the A 303 lifts my spirits. I'm going home.
Friday 4 January 2013
Turmeric
I've picked up, from my friends on the Macmillan cancer forum, that there is a trial running in Leicester as to whether or not curcumin - found in turmeric - can increase the efficacy of chemo in bowel cancer cases. The basic details are on Beating Bowel Cancer, Cancer Research and BBC News.
So, do I take supplements or not? Frankly I've found the whole issue of what I should or shouldn't eat to be very unclear. In one place, green tea is the wonder drug; in another it interferes with chemo. The oxaliplatin strips out magnesium and calcium so again supplements seem obvious, but in other places I've seen it suggested that B vitamins can be counter-productive so a multi-vitamin/mineral is out. The only consistent advice seems to be less processed meat and less red meat. And from reading the above on the turmeric it's not clear how much one needs to take and there seem to be some questions around absorption. So I think I will play it safe and stick to taking turmeric in my favourite form - curry. Fortunately I love cooking curry myself so have total control over the spice content. No-one needs the side effects of a heavy hand with the chilli round here!
I'd be interested to hear from anyone who knows more about the turmeric study than I've been able to find out though.
So, do I take supplements or not? Frankly I've found the whole issue of what I should or shouldn't eat to be very unclear. In one place, green tea is the wonder drug; in another it interferes with chemo. The oxaliplatin strips out magnesium and calcium so again supplements seem obvious, but in other places I've seen it suggested that B vitamins can be counter-productive so a multi-vitamin/mineral is out. The only consistent advice seems to be less processed meat and less red meat. And from reading the above on the turmeric it's not clear how much one needs to take and there seem to be some questions around absorption. So I think I will play it safe and stick to taking turmeric in my favourite form - curry. Fortunately I love cooking curry myself so have total control over the spice content. No-one needs the side effects of a heavy hand with the chilli round here!
I'd be interested to hear from anyone who knows more about the turmeric study than I've been able to find out though.
A different game
Not snakes and ladders this time but see saws. From being really angry to being really quite ok (starting from a chemo base - I am still physically a wreck and being out running or cycling is unlikely any time soon, worst luck).
The thing I forgot, I think, was drinking. Wednesday night I slept really badly, even by my current standards. Every surface felt, well, I can only describe it as toxic. The palms of my hands and the soles of my feet were throbbing and my mouth felt like someone had taken a Brillo pad to it. Even internally I just felt poisoned, like nothing was working properly, despite Tuesday's reflexology session. The only solution I could come up with was water. For some reason, a glass of room temperature water just doesn't appeal at the moment so I have resorted to drinking boiled water from the kettle, like it was tea. I do put it in a mug first... And today I feel, not full of energy exactly, but cleaner and brighter.
I must remember this next time!
The thing I forgot, I think, was drinking. Wednesday night I slept really badly, even by my current standards. Every surface felt, well, I can only describe it as toxic. The palms of my hands and the soles of my feet were throbbing and my mouth felt like someone had taken a Brillo pad to it. Even internally I just felt poisoned, like nothing was working properly, despite Tuesday's reflexology session. The only solution I could come up with was water. For some reason, a glass of room temperature water just doesn't appeal at the moment so I have resorted to drinking boiled water from the kettle, like it was tea. I do put it in a mug first... And today I feel, not full of energy exactly, but cleaner and brighter.
I must remember this next time!
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