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.

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!

Thursday, 14 February 2013


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).


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.

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.

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.

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!