Jabs, t'internet and chemo cycle 3

I had two jabs yesterday - seasonal flu and pneumoccocal (pneumonia) vaccines - one in each arm. I should have had these on Tuesday, but due to an appointment cock-up I missed my appointment by and hour and had to take an appointment yesterday. The idea was to have the jabs as late in the chemo cycle as possible and to give myself a day to recover. I felt fine when I went to bed last night, except for a slightly aching pneumo arm and mild nausea (brilliant! a new source of sickness, just what I don't need). I woke in the night at 3am with a massive pain in the pneumo arm and lay awake wondering if this would cause any problems for chemo today.

Don't you just hate the internet? After an hour of failing to get back to sleep, my arm aching like it had been severed at the shoulder, I nip downstairs and foolishly enter 'pneumoccocal vaccine chemotherapy' into google. The results were a little startling (even cancerhelp.org.uk): NOT TO BE GIVEN DURING CHEMOTHERAPY! Pretty difficult to drop off after reading that.

I am in hospital now. The arm ache is much reduced. I asked about the pneumo jab and they weren't even slightly interested. Blood counts are good, but the liver function test is still poor. This caused quite a bit of waiting around while the consultant was ... consulted and then granted permission to proceed. I have an appointment with the consultant the day before chemo cycle 4 to discuss the mysterious liver test results - so clearly she is not that worried about this. I've spoken to my GP who assures me that my LFT results from July (pre-op) are normal so at least I know it's not alcohol induced sclerosis from an over-exuberant delectation for beer and red wine. I wonder if it has anything to do with 8 days of maximum dose IV paracetamol while in hospital, followed by the same with tablets on returning home?

Here comes the oxaliplatin tingle!

Radio Silence

Hmmm! bit of a protracted break since my last post - I have not been on holiday! The last chemo session turned out to be quite a tough one and it took me 10 days to get back to normal - fatigue and nausea being the common problems. I started to recover on Sunday and by Monday I felt myself again. We celebrated the return of my good mood with a really nice long family walk on the Westbury White Horse followed by fish and chips. Why is it that a cod lot tastes so much better when eaten outside in the cold from the paper or am I just not getting out enough?

Sarah continued to have man flu and eventually went to the doctor who suggested it had probably been swine flu. The kids (they started it) had a relatively easy time with it, being off school for only 5 days between them, but it hit Sarah really hard. She is still short of energy, but will be returning to work this week after two weeks off sick. I'm still amazed that I didn't even get a temperature and hope to have the immunisation before it passes my way next. The up-shot is that we have both felt really rough for the best part of 2 weeks and have taken it in turns to pick up the kids and generally keep things ticking over. If you feel you have been postponed or ignored, my apologies and we do (still) appreciate all your kind thoughts and support.

My 3rd session starts on Thursday (after just 3 days of normality :-( and I do hope to get back on here a little more sharply next time.

Thanks for checking in.

Chemo session 2

I had a somewhat eventful journey into hospital this morning. With Sarah in bed - I took the kids to school as early as possible to ensure I could get back in time to catch the bus from just down the road into hospital.  I didn't want to drive to hospital because of the Oxaliplatin rush I wrote about last time. As we draw up outside school, Henry points out a hissing sound from the back tyre. The tyre is not yet flat, so keeping calm, I tell the kids to go on into school while I go around the corner and find somewhere less busy to put the space saver spare on. This I attempt with the minimalist jacking kit comprising of a flimsy jack and a chocolate tea-pot-useful plastic-ended nut wrench. The wheel nuts are tight, but I manage to get them loose by standing on the wrench, but I can;t get the wheel off because the alloy wheel has corroded onto the rusty wheel hub and is stuck fast. No amount of kicking or bashing the end of the plastic wrench into the steel/alloy rust 'weld'.

I need to get home because I have left my extensive travel kit including stoma care, change of clothes, chemo log, iPod, book and journal (yes this stuff gets written twice!) laid out on the dining room table so I can't abandon the car yet. The tyre looks very worn, so I decide to ruin the tyre wall as I slowly limp back through Bradford to the tyre  centre in Treenwood Road industrial estate. Not a long journey, but I attract quite a bit of attention and flashing lights with only a couple of PSI in the deflating tyre (what is the hand signal for "yes I know"?). I achieve this still with a conviction that things will fall into place and I will get to hospital in time.

The lads at Malvern Tyres were great and highly confident about getting a new tyre in place in less than 10 minutes. This is before they notice that the tyre on the other end of the axle is also badly worn and remembering that the MOT is due next month that's got to be done too, but there is still time. And then we notice that I have fractured the locking well nut socket by jumping on the wrench (cheap jag rubbish!). But the lads reckon they can fix it by improvising a wire brace around the fracture. Several blows from a huge sledge hammer to the inside wall of the tyre are required to break the 'weld' holding the unbolted wheel in place - I could never have done this at the roadside!

Up to this point I have maintained my cool and felt in the flow of events. Somehow everything will work out, despite the hiccoughs. On top of this, at the till the chief fitter offered me a discount (I was about to ask, but nice not to have to) - I handed over my business credit card, but after being moth balled for several months - I promptly step out of the flow and forget my PIN. Panic sets in as I try my personal credit card which I used only yesterday - my mind is a blank. The cashier leans across the desk and says - "I don't think you're into card fraud... but this is your last attempt - so relax!" I do and it comes to be in a flash.

Go to Malvern Tyres - for a more enlightened grease monkey!

I arrive at the clinic with a minute to spare, but there is no huge hurry as they are running late. As I sign in at the reception desk mum appears at my right arm to be my chemo buddy for the day - very welcome.

It a long process. First bloods are taken to check my blood count, if they are too low, this indicates that my immune system is not able to cope and the therapy will be postponed. This takes about an hour. I pass the blood count limits, but my liver function test is still outside of normal limits. This causes a further delay while the consultant is called for advise. As discussed yesterday, they decide to proceed with full dose. There is a further 45 minute delay for the pharmacy to make up the drugs - they are expensive and have a short shelf so that are made to order. The LFT results are a little worse than last time - so I will be referred to a Gastroenterologist for further tests over the next week... watch this space.

The chemo session goes well and post infusion symptoms symptoms seem less than first session (no Oxaliplatin rush this time). I check with the nurse and, after donning my hat, gloves and 4th layer brave the not that cold and head for the car. During the course of the evening the nausea increases and I don't really sleep. After tossing and turning for hours - I write this journal - eventually tired eyes give way to sleep.

When I wake, the nausea is terrible but I have been given Dexamethasone - a very effective steroid anti-emetic which increases the metabolic rate (so you can't take it in the afternoon/evening). Consequently I don't rest much during the day, but I don't have bad sickness. I am very tired - so it's early doors for me now.

I don't want pig flu!

Starting to Think About Work
I called into work on Wednesday morning to discuss how I may be able to contribute from home. I found it quite difficult to sit at home on my good week (ie. the week before chemo) when I am feeling pretty well, without feeling an little bit of a fraud when my already busy co-directors and Jonathan are juggling the balls I've let drop. I met with Kevin and took some marketing work off his rather full plate - I'm hoping to replace some of the embarrassingly out of date content at the company website hopefully next week when the tiredness and ickiness subsides.

Consultation
In the afternoon I visited the Oncologist at the Bath Clinic. The first chemo session went well and I tolerated the drugs well - "grade 1 toxicities". Although the MRI scan of the liver showed good results - the scan instigated by impaired liver function test (LFT) from an earlier blood test. Consequently for the first chemo session one of the chemo drugs (5FU) was reduced by 30%. Since I coped well the 5FU will be increased to full dose in the second chemo session unless the LFT results are worse. Therefore, I may get worse effects in the next session; I've also been warned that some of the symptoms are cumulative - especially the tiredness.

I've been a bit slack with my blogging recently (these last few posts have been written retrospectively), and this has been because the rest of the family have been down with flu and high temparature - Henry first (1 day in bed and 38.5°C); quickly followed by Ben (2 days in bed and 38.9°C - impressive nightmares!); and then this week Sarah (3 days in bed and 38.7°C) - pig flu???. Consequently I have been doing a lot of the child care - meals, bedtimes and taxi runs and it has been knackering. Amazingly, I have thus far managed to evade catching this myself - which would inevitably involve a stay in hospital for me because of my weakened immune system. I explained this to the Oncologist who admired my resolve not to catch this, but said it was inevitable -- we'll see. Either way we go ahead with chemo since the illness was considered viral - they are much more worried about bacterial infection. As a precaution I will have flu and pneumococcal (pneomonia) jabs just before the 3rd chemo session when my immune system is at it's strongest.

Normality returning

You Are Not Your Mind
On Saturday we all went to a celebration of Emma's life, a friend from Bradford who trained for the Bath Half marathon with Sarah. She had been battling with depression for some time - a battle she so tragically lost in August. In the relatively short time we new Emma we discovered an immensely loving mother, wife and friend. She was an incredibly active person - a doer, a helper an ambitious achiever of those things that are really important: the great outdoors, people, family - she had no interest in material possessions. As is too often the case with severe depression, perhaps this amazing soul/spirit/heart/life was invisible to her, masked by an ill-thinking mind painting a different picture of failure. As I listened to the speeches at the celebration from husband, brother, school friend, trainee nurse, and friends from Bradford - it is quite clear to me that none of the 300 guests would recognise this minds eye view of failure.

Alas, Emma leaves behind a husband and two kids and a huge network of family and friends who will struggle to make sense of this loss.

I was nervous about going to the event for fear of embarrassing myself amongst friends: I am still not a very expert BagMan and have had a number of accidents which keep me close to my own bathroom. My own condition and fear pale into insignificance as I watched and heard real courage and strength, especially from husband Richard and the kids who have far more to endure.

Inspiration to us all.

Mum's Birthday
On Sunday we went to my mother's to celebrate a happier event with my elder brother and his family. Mum lives a little under an hour away - I haven't been able to visit for more than 2 months. It was good to see all the work she has done on the front garden, which is looking much tidier, and most important for mum, easier for her to look after.

Mum cooked a beef casserole - a very welcome treat since red meat is severely controlled by the lead shopper in the Buckley household following recent reports linking red meat to colon cancer. It was lovely. Less enjoyable was the water I drunk while the rest of the adults exulted the delights of very nice looking Sancerre and Rioja. I haven't drunk any alcohol since learning about my impaired liver function following my last MRI scan - it seems more sensible to devote liver function to removing chemo drugs than alcohol, so I am teetotal until this is resolved.

One possible upside of the ileostomy is that it is quite difficult to keep your weight stable - the large bowel obviously collects quite a lot of nutrients - which I am not doing while resting mine. This meant 3 slices of birthday cake. The 3rd piece was a little over the top I admit, but my Aunty called in later in the afternoon and, well... somebody had to keep her company. (Yum-Yum).

This was my longest day out so far - I even managed to drive home to preserve the Sancerre guzzlers license.

A better day

I'm feeling much brighter today - the sickness has gone.

Good enough to write up some of my journal backlog from August - take a look at:

• Life Exists Outside of Room 4
• Anything but the dreaded NG tube
• Bottom of the world

Drop down August in the blog archive for a bit of context.

:-)

Feelin' moby

The feelings of sickness and tiredness (caused by diarrhoea == low absorption) at the weekend. I thought that I might improve after having the infusion pump disconnected, but in fact the nausea has continued and worsened if anything. I guess this makes sense, since one group of 'good' cells that suffer severely with chemotherapy are the fast growing cells that line the digestive tract which are renewed every 3-5 days. So little wonder that I am feeling worse now than when I started the chemo. The diarrhoea is easily kept in check with loperamide, but nothing seems to be capable of taking away that feeling of sickness.

In itself, there's nothing particularly debilitating about constant nausea. It's not painful, I can eat and I am not actually being sick. Despite this, it's amazing how successful it is at making you feel miserable! It saps your laughter, energy and enthusiasm for doing anything much. So on that chirpy note, I'll end by reminding myself that at least it is .... temporary.

Chemo session 1

I approached this appointment with [my now famous?] trepidation: a mixture of feelings stirred up by the well publicised side effects, the still-sore Hickman line and the thought of 4-5 hours in hospital. Fortunately, so far, the experience has been easier than my pre-conceptions.

Given the toxicity of the drugs and the way they are being main-lined directly above the heart, there's quite a lot of procedure and paraphernalia involved. The drugs are made up immediately before use and delivered to the ward in a "radio-active" style plastic box covered with warning labels. A fully laden tray of sterile packages already lay waiting in my day room.

The whole process involves lots of flushing of lines to keep them patent, clean and free of active drugs. Firstly I was given a steroid and anti-emetic these drugs reduce the effects of sickness and increase the effectiveness of the chemotherapy that follows. Half an hour later, the lines were flushed and I was given Oxaliplatin and folinic acid together (the Hickman line has two lumens to permit simultaneous infusions) - folinic acid has a vitamin effect like folic acid. This infusion takes 2 hours. Once this is complete the fluorouracil (5-FU) is given as a large bolus with alongside saline and finally a very simple pump is fitted  which infuses 5-FU at a low rate (2ml per hour) for the next 48 hours - I'm wearing it now in a bum bag.

I'd had to get up a few times to take my infusion stand for a walk to the bathroom. I was aware of getting cold and my socks felt cold on the carpet. one of the most common symptoms of Oxaliplatin is a substantially increased sensitivity to cold which can trigger other systems.

Up to this point I had felt generally fine, but almost suddenly I felt hot and flushed and somewhat overwealmed. The nurses call this the Oxaliplatin rush which occurs commonly a couple of hours after the drug is administered. I lay quietly on the bed for an hour before being discharged when Sarah returned from picking the kids up from school.

The nurse suggested that I keep a side-effects journal. Here it is...

When I got home I went straight to bed and stayed there for the afternoon and evening. I felt extremely tired - exhausted, a bit like coming down with man-flu. My mind was pretty active, but the body just said no. I didn't even feel like holding a book. I felt hot and my head and legs ached like flu. I could feel a tingling sensation in my finger tips but only when I raised my arms. My mouth felt dry, but tasteless. I was acutely aware of draughts, especially around my head, so I have taken to wearing a thin headscarf which I used extensively when training for the Bath half-marathon. I drink only warm drinks, wash my hands only in warm water and I leave a pair of under-gloves attached to the fridge. With the headscarf and a pair of light pyjamas - I look quite a picture! I get a tightening of the jaw when I start to eat but it quickly subsides. My eyes felt a bit dry and gritty last night - but not significantly. I suffer a few sniffles - but not much. I am aware of a vague nausea but this usually goes if I have a nibble on something.

In summary, it appears that I have experienced many of the side effects, but - aside from the tiredness, in a much less acute fashion than I expected. I've been told this my get worse as the drugs have a cumulative effect - but all in all, I feel calm and like I'm coping well.

A quiet weekend is on the cards and I am confident that I will spend much of it resting in bed. Once again - many thanks for all your messages of encouragement and good wishes.

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