13-hour day at the Christie

Yesterday, Karen and I arrived at 8.30am for the blood tests appointment. I’d been awake since 2.30am (not from worry, just couldn’t stop my brain whizzing round and get back off to sleep), so wasn’t at my best. I wasn’t called until 9.15am at which time Karen left and I had time to kill until the next appointment (for treatment) at 11.30. Went to the information centre to find out about complementary therapies, popped my head into the wig centre (apparently I will lose my hair in about 10 days – so a wig is on the agenda – waiting for a referral), then went to meet Gita in the on-site coffee shop.

At 11am I went back to check the location and ‘calling’ procedure for treatment and was told they were an hour or so behind and that I should leave my mobile phone number for them to ring me, so I then went to track down a sandwich and sat down to read.  At 12, I got a call to pick up tablets at the Pharmacy and to take one an hour before starting treatment (ie now), and then was called up to the treatment suite at 1pm to watch a DVD with around 6 other women. The DVD was all about after-effects of chemo with great stress on watching out for signs of infection and not ignoring them, followed by around 5 case studies of patients saying how they’d had high temperatures but not phoned the hotline – thinking “oh I’ll be OK” and then of course weren’t.  We’d all got the message after the first one, but had to sit through another 4 cases.  My problem is that of the 5 or 6 symptoms of infection, I already have 4 of them (persistent cough, sore mouth, breathlessness and fatigue). But, I’ve got a thermometer and will check it at the first sign of raised temperature (over 37.5ºC for the uninitiated).

After the DVD there was more sitting around until allocated a bed and then I was taken off to have the catheter inserted (around 2pm) – in the back of my hand.  Pretty painful experience since the first attempt wasn’t a good enough vein so the nurse had to go for another one.  Then back to my bed for the drip to be attached (for 2 hours) and the injection of vitamin B12 (even more horrible than the catheter).  Fortunately Linda was by my bedside for comfort by this time.  I didn’t find out till later that there were to be another 5 drips of varying lengths of time, with rest periods in between.  Going to the loo while pushing a drip stand with a mind of its own was an experience not to be missed (together with peeing into cardboard containers so the ‘outputs’ could be measured and correlated with the ‘inputs’).  I managed a few snoozes between drip changes but the adjustable chair, which was initially comfortable, ceased to be so after more than 7 hours in it.  Anyway, food came round at 5pm and I actually enjoyed a ham sandwich, fruit yoghurt and a banana. 

Karen and Peter came round at 8.15 and spent the last hour and a half with me and took me home – the rest of the building was in complete darkness, but the treatment centre still had new patients coming in (some just seemed to have a drip in for a couple of hours and then went home).  I was actually hungry when we got home (10pm) and relished a meal (first time for ages I’ve had any appetite for food) and watched a film on TV (‘Thank you for smoking’ – irony huh?).  Unfortunately I missed the last 15 minutes cos I fell asleep on the settee (K & P having gone to bed earlier).

This morning I felt great and ravenously hungry (probably the effect of the steroids) and full of plans for a new project I want to get involved with (more on this later), but by afternoon I was flagging and then slept for 2 hours. Felt a bit nauseous an hour ago, but have tablets for that (the number of tablets to be taken – on top of the pain meds – is just phenomenal). So, that’s about it for now.  I’ve no idea how I’ll feel over the next few days, but think I should keep away from people until my antibodies build back up again.  I’m hoping to be up to seeing visitors from Wednesday and will text or e-mail to make arrangements.

I must pay tribute to my wonderful circle of friends who have been supplying me with good conversation, support, information and pampering (reflexology from Vera on Monday and shoulder massage from Lydia on Tuesday).  Lesley picked up an interesting BBC news item about new research into a genetic marker for non small cell adenocarcinoma – a really interesting development, but too late for me.  Hannah’s been tracking down statistical research, but latest data is for 2007 and again, all lung cancers are lumped together and the figures given are - 25% survived lung cancer for 1 year, 7% for 5 years.  Given that 80% of all lung cancers are ‘non small cell’, one could assume that these stats are mostly for that, but the virulence of some of the lung cancers could skew the figures.  When I next see the consultant I need to quiz him more about the basis for their prognosis, ask what data is kept, and whether any analysis is done by gender, age, ethnicity etc. I suspect there isn’t much data analysis done (future job for a free-lance statistician??).  Finally, there is an interesting article in today’s Daily Telegraph by Cassandra Jardine (referred to a few weeks ago) on Michael Douglas’ apparent recovery from throat cancer – in the health section of the paper’s website.