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!

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.

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.

Thursday, 21 March 2013


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.


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!".

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...

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?