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.

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.

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.

Friday, 4 January 2013


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 CancerCancer 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.

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!