Getting better

For the last 8 days I have felt very well – stronger and fitter every day - and a lot less breathless.  In fact, today I feel better than I have for several months, so even though the chemo means 3 – 4 days each 3-week cycle of feeling terrible, it’s definitely worth it.  On Tuesday I even went out for a walk to the health centre to pick up a repeat prescription, and to the post office, and walked back.  A journey that would normally have taken around 15 minutes, but took me 45 (including a 15 minute wait at the chemist).  Still – I made it without help and only had to stop to rest a few times.

I had my blood tests and X-Ray at The Christie yesterday (and didn’t have to wait very long at all) and saw the young Italian Oncologist again to recount my experiences.  I didn’t get chance to ask him any of the questions I had ready (they’ll have to wait till next time) apart from whether or not the second dose of chemo (due next Wednesday) will be better, worse or the same as the first dose.  He wasn’t able to say because it’s different for every patient.  So, I’ll just have to wait and see, but at least I have a better idea of what to expect.  At the recommendation of my GP I’ll take the anti-biotics from day 1 and so hopefully pre-empt the possibility of any infection.

It’s been great seeing so many friends over the last week and I look forward to all the other planned visits over the next few days, but I’m going to have to limit future socialising and put some more time into finishing off the book editing if I’m going to meet my target deadline of end of March.  I’m feeling much more optimistic about my expected lifespan and so I think I’ll have more time than I previously thought to catch up with everyone.  Anyway, I don’t think I’ll be putting on another ‘posting’ until around 5^th February (few days after the 2^nd chemo), so bye for now! 

Bleeuugghh!!!

I spoke too soon last Thursday when I said I felt great – it was probably just the impact of the steroids.  The after-effects of the chemo really took hold on Friday - I felt as though I’d been hit by a bus! Every part of my body throbbed and pounded with pain.  In the evening I took a big swig of liquid Morphine and managed to sleep for a bit.  I felt marginally better on Saturday and then a bit better again on Sunday, but then started uncontrolled coughing on Sunday evening, just after the carer changeover from Karen to Peter.  It was apparently a chest infection, but I didn’t get a wink of sleep all night and my GP (who is brilliant) had to make a house call on Monday and got me on antibiotics (again!).  If there hadn’t been an improvement by the next day, he was planning to get me admitted to Christie’s, but there was a massive improvement by Tuesday, and by Wednesday, I was back to normal (at least what passes for normal these days). 

The other side-effect was the nausea and complete inability to contemplate eating anything.  The anti-nausea pills helped, but the thought of eating even tiny quantities of food was enough to set me off retching.  However, eating is now easier and I’m pampering myself with only food that I really fancy, regardless of whether it’s good for me or not (or ethically sourced/transported – the planet will have to look after itself for a while).

So, I’m up for visitors again.  I prefer arrangements to be made by e-mail or text, since telephone calls interrupt my daily naps, and I particularly don’t like phone calls in the evening, so be warned!

Anyway – the latest on my book is that Tony Dale has been an absolute star and has started going through the chapters and indicating where he thinks passages can be deleted or shortened, which gives me something to work on over the next few weeks.  I’ve also got interviews lined up for material to finish off the last chapter and some ideas from Neil on how to link the Introduction with what’s happening currently on the Council to make it up to date and relevant.

And, in relation to the new project idea I had when my brain was buzzing on Thursday – this is to set up a Manchester EMA Trust fund for those students currently in the middle of a 2-year A-level course who have had the rug pulled from under them. From my experience of setting up charities, and contacts with business people etc, I’m sure it will be possible to set something up and garner enough funds to help a significant number of young people.  I need to talk to more people about it, but – watch this space!

Well, that’s all for now.  I’m due to see the consultant on Wednesday for blood tests CT scan and to discuss the next steps (and quiz him some more about the survival statistics).  Next chemo session due on 2^nd February and I don’t know if they’ll change the ‘cocktail mix’ in the light of my experience, or whether my reaction will be better or worse than the first time.  At least I know what to expect now – forewarned is forearmed!

  

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.

Ups and Downs

I had intended to post something last week but good days have been filled with visitors and bad days have been spent wrestling with pain control.

Christmas was very good – one of the best I can remember.  Karen and I drove over to Peter and Jenny’s on Christmas Eve and we all went to the local pub (Stanley Arms) before dinner.  Never having been to a pub on Christmas Eve before I had assumed it would be crowded and lively, but it was very quiet, so we didn’t stay long and went back for dinner, which Peter cooked (with Jenny assisting) while Karen and I watched another episode of ‘Lost’.  We’d received DVDs of the 6^th (and final) series as a joint Christmas present (both being addicts) and, of course, opened it before Christmas day and tried to limit ourselves to watching 2 episodes a day (or at least no more than 3…).   On Christmas Day we watched TV and DVDs while Peter cooked a wonderful dinner with all the trimmings.  I can’t claim any credit for him being such an accomplished cook because he took it up long after he’d left home.  Then we all played Scrabble, slept and watched more DVDs.  Being so warm and sleepy and comfortable, Karen and I decided to stay another night and came home on Sunday morning. I had a quiet afternoon at home while Karen and Peter went to see their half sister and new baby nephew.

Monday was Peter’s birthday and I’d planned to do a roast beef and Yorkshire pudding dinner for the four of us, with special birthday cake to follow (bought, not made – with a Manchester City logo and appropriate piped wording) – reminiscent of their childhood when I used to make birthday cakes with themed decorations for their birthdays. However, I’d not taken into account how challenging this meal would have been at the best of times - ensuring that everything (joint, Yorkshire pudding, roast potatoes and vegetables) would all be ready at the same time (many years since I’d done it).  The result was that by the time it was all ready, I had to leave them to do the carving and the serving out, while I crawled on to the settee to lie down for 10 minutes before I was fit enough to eat with them.

The rest of the days since then have been very busy with visitors, alternating with bad days when I just couldn’t get the pain under control.  In an attempt to control the severe peaks of the pain cycle and try to get smaller fluctuations I changed the medication regime to taking smaller doses more frequently rather than large, infrequent doses, but this turned out to be a disaster, so I went back to large doses at 4-5 hourly intervals. The pain peaks were still erratic and unpredictable, and the only thing bringing it down was a double dose of Codeine.  Although small doses of Morphine helped initially with the breathing (and Karen called it my turbo booster juice) it’s ceased to be effective.  The Macmillan nurse said that I could take larger doses at 4-hourly intervals, but unbelievably, it still doesn’t bring down the pain – although I’m sure if I drank the whole bottle it would!!!

Anyway, last night things came to a head and whatever I took, the pain went on escalating until I daren’t take anything else for fear of overdosing, so I rang the out-of-hours GP service – which I have to say was wonderful.  After going through the routine questions with an administrator, a doctor rang me back within 10 minutes and went through with me what I’d taken during the day and said I could safely take another Tramadol and that a doctor would be with within 2 hours.  He actually arrived within 20 minutes (by which time the pain had begun to recede) and did a very thorough examination and was very informative about what pain meds could be taken frequently and what should be restricted.   He thought I might have fluid on my lung again, so this morning I contacted the Christie and they booked me in for an assessment at 11am.  After chest x-ray, blood tests and the usual ‘obs’ and tests the doctor concluded that there wasn’t any fluid (thankfully) but possibly a chest infection, for which I now have anti-biotics.  So, the pain is now under control and the chemotherapy is still on schedule for next Wednesday (followed by 3 other courses at 3 weekly intervals).

I heard over Christmas that an old friend from the Labour Party in the ‘80s (whom some you may know) - John Shiers - has also got lung cancer – mesothelioma (from exposure to asbestos).  He is not going to go for chemotherapy but, as he is a therapist and practitioner of meditation and acupuncture, he is going to use these alternative therapies. We are going to meet up when he gets back from India and compare notes and he is happy for me to share all this in my blog.  Very worryingly, his exposure to asbestos was from his days living in the Hulme Crescents and he says there are a number of former Hulme residents in the same situation who are getting together a campaign to raise awareness and claim compensation. As soon as I know any more about this, I’ll pass it on. 

I need to finish this now, or it will never get posted. I’ll post something about the book in a few days.