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.

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.

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.

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.


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.

Sunday, 21 April 2013


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.

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?