Chapter 9 - The Yellow Peril and The Red Espresso

Mr Bean's swimming costume
Does anyone remember the sketch where Mr Bean changes into his swimming trunks without taking off his trousers? Hilarious but I've spent the last two days figuring out how he did it. And more to the point, how I can change my shirt whilst connected to Horace. I had assumed – wrongly as it turns out – that they would give me a 20 minute break from him on Tuesday morning prior to starting my Methotrexate (aka The Yellow Peril). This time to savour if not a shower then a splash of water and some fresh deodorant and a clean shirt.

Nope, not allowed - gotta get straight to it and furthermore I shall be connected for the next 24 hours to the Yellow Peril and another 24-48 hours continuously after that to the fluids; this I must remember for next time as it's not very pleasant for anyone.

The effects of the Methotrexate were not obvious, to be honest; I suffered no seizures, allergies or side effects other than – and this is only in hindsight – a gradual wearing down of my ability to function. After a day or so of being connected I realised that I hadn't moved from this room except to go the bathroom, and then always, always with Horace.

Me, Horace and The Yellow Peril

Fatigue
One definition: Fatigue is a feeling of weariness, tiredness, or lack of energy
They're right; it's not just tiredness, that can be overcome by a power nap or a good night's sleep (though that would help). It creeps up on you and the apathetic feeling that goes with it is almost upsetting; I understand what ME sufferers mean now when they talk about not being to climb the stairs or get out of bed.

For someone who is active nearly all the time and very rarely 'ill', it is like having a limb removed; the novelty of having a bit of 'me' time soon wears thin.

I am reading a good book but barely taking it in. Eating tasty food that I can't taste unless I put dollops of ketchup on. I try watching a DVD and get interrupted so many times it is difficult to pick up the thread again, even if I can be bothered to connect it all up in the first place.

Alarm Bells
I have 'obs' every few hours - blood pressure, heart, oxygen sats and temperature; all have been pretty normal until Wednesday evening when my temperature, normally 36.9, shot up to 38.1. Suddenly a flurry of activity – antibiotics, paracetamol, talk of X-Rays and even more frequent obs, like every 15 minutes. It's precautionary rather than reactive, I know. Things have stabilised over the 24 hours since then, settling down at 37.1 - 37.5, well within normal tolerances. No wonder they couldn't do this without me being an in-patient!

Yellow - Red - What next?
Thursday 30th October sees a pre-Halloween bloodfest, in the form of whole blood hoisted up on Horace's shoulders and I start thinking about the 53 or 54 pints of blood I have given over the years, starting when I was student of 19 and got dragged along by my old college mate Ian Whettingsteel (the only chap I've ever been a Best Man for). In particular I wondered whose blood it was, and whether I might start speaking in a foreign tongue or suddenly be able to play the piano; in fact I got to wondering what the odds were of me actually getting my own blood back but I think that is highly unlikely, don't you?

Whatever, the effects, far from being unpleasant, were uplifting. More oxygen to the brain, more feeling of well-being and less fatigue. A bit like a double espresso, really.

One line out
My PICC line is now removed; the lady who fitted it was not best pleased that it had not been treated with more care and had pulled out by about 12cm - enough to leave it short of the chest cavity it should be in, and the probable cause of the blood clot which is now being treated by anti-coagulants. A new one is to be fitted in the other arm on Monday... and no-one has been left in doubt about how it should be treated. It will be good to get rid of the cannulas again - they are painful, temperamental and they restrict movement, washing, typing, writing etc.

An interesting few days and an odd feeling that it's my birthday tomorrow but I shouldn't really be here for it. Might I be allowed home for a couple of days this time next week when I have some sort of immune system back, do you think? Fingers crossed...watch this space.

Finally, an update on the fundraising. It's slowed down now, as I have exhausted my patient, long suffering facebook, twitter and other friends. We are well past the halfway point at £2,630 plus Gift Aid. I can't thank you enough and Lymphoma Association said this:

"On behalf of the Lymphoma Association, I would like to send you our very best wishes and to say thank you so much for thinking of the association.

The amount you have raised on your Virgin Money page is staggering and our thanks go to all your friends and family for the support they have given to the association."

If you can help spread the word, we can get the other half sorted over the next few weeks. It would be really good to get to the personal target of £5k.

This is the link to the page http://uk.virginmoneygiving.com/team/anillblokesteam

Thank you.

Chapter 8 - The pin cushion

The best laid plans...
Back in clink, making the best of hanging on to the memory of a lovely 30 hour break in Cheriton, feeling decidedly homesick (but luckily not feeling actually sick) and girding the loins for tomorrow's Methotrexate. Not a great night, as they fixed me up to Horace to prehydrate me in readiness for the morning.

I understand Methotrexate is bright yellow, takes about three hours to administer and stays in the system for 24 hours after which 'chemo rescue', a sort of antidote, follows to neutralise the chemo and fluids to start flushing out the system, then a two-three day period of flushing the fluids rapidly through to ensure the toxins produced, and the breakdown of the cancer cells, do not clog the kidneys. All sounds horrendous.

What surprised me rather was at the early doc's rounds on Monday morning, they announced that my white blood cells are almost zero already; strange, I feel fine – and although I was expecting this, I hadn't anticipated it coming so quickly. Suddenly feeling rather vulnerable and the staff obviously agree as they moved me later to a side room again. Not unhappy about that bit.

Monday was to be A (much anticipated and mentally prepared for) Big Chemo Day. So when mid morning came and went without starting, I was curious to know the delay. It seems the body has to be alkaline to accept the Methotrexate and my urine shows a ph level of 6 - too acidic by far. Perhaps the fluids were started a bit too late in the night but they were trying to get me to have a good sleep before starting. Testing throughout the day, the level finally came down late afternoon ad I thought "Yes - let's get started". It wasn't to be; partly because the Methotrexate is not a 3 hour job this time but a 24 hour one! And they don't want to start important chemo at the start of a night shift. Hence a 24 hour delay; frustrating but inevitable.

Tucked up in my own room again I slept very well even if Horace and I did go on many a journey together to the bathroom before sun up. I was very, very tired last evening and probably started snoozing early on, so not surprisingly my body clock was awake and raring to go at 5.30am again.

Tuesday is another day
The autumn sun shone brightly through my rather grubby windows overlooking the ambulance bay. The staff are keen to connect me to the chemo now my body is ready and alkaline. One minor hiccup is that there may be a problem with my PICC line, the line which goes into my upper left arm and then deep inside my shoulder/chest cavity: My left arm is swollen a little again - a quick panic whilst I remove my wedding ring with soap - and this could mean that the line is leaking (not so bad or just fluids but pretty disastrous if bright yellow Methotrexate leks into the tissue or that there is some kind of thrombosis, or clot near the line. Either way, in order not to delay the chemo further, they ignored the line and started stabbing me with needles to put in cannulas in my right arm.

My right arm - the pin cushion

Five 'little scratches' ended up in two successful cannulas, which means my arm looks like something from a junk shop and feels like a pin cushion. The unsuccessful attempts, even though my 'veins are beautiful' were painful and produced nothing.

There is a logistical problem with being tied to Horace for the next 24 hours - I cannot get changed. So I will probably have to stay in my shirt overnight and forego the simple pleasure of the shower until tomorrow.

Meanwhile, I am just about 25% of the way through my bright yellow bag. I have been told it might be replaced tomorrow by a big red bag of blood as my haemoglobin levels have reached a very, very low point. But I still feel ok! Odd.

Oh - and one final piece of news: the fundraising page for Lymphoma Association has now passed the 50% point - £2,500 not including gift aid. Well done, everyone, thank you. Lymphoma Association seem pretty pleased too : "The amount you have raised on your Virgin Money page is staggering and our thanks go to all your friends and family for the support they have given to the association."

Hear hear.

Chapter 7 - The Exeat Weekend

Churcher's College, my 'home' 1965-1970

The Exeat Weekend
I went to boarding school at the age of 10 and hated every minute of it. I never did get used to the loneliness and the lack of privacy, despite the camaraderie, of being cloistered together with a load of other smelly oiks. I felt abandoned by my parents – although I knew they had sound enough reasons for sending me there.

The exeat weekend was a highlight: every 3-5 weeks we were allowed home from Saturday after morning school until Sunday early evening. It was always a bitter sweet experience because the elation and expectation of being released on Saturday gradually turned to trepidation towards the Sunday evening when it was time to go back again. I have never forgotten that dreaded moment when it was time to get in the car and go back.

All those memories of the 60s came flooding back this weekend as I was allowed home after chemo on Saturday morning until early Sunday evening. But the sweet part was, in hindsight, much sweeter than the bitter part of having to come back to my hospital bed. It was a brief respite, an oasis in a desert, a tonic that was every bit as powerful as some of the drugs I have been pumped with. True, I spent most of Saturday afternoon and early evening fighting (unsuccessfully) nausea but after that, things improved and some sense of normality coursed my veins instead of drugs.

I once more experienced the joy of Rosie jumping over me, so excited that her tail nearly wagged itself loose, with the obligatory cushion stuffed in her mouth as peace offering-cum-dummy. I lounged on my sofa, enjoyed the delightful quiet and cosiness that our old cottage offers, I slept (yes, really slept) in my blissfully comfortable old bed, I enjoyed a bacon sandwich, a cup of proper tea, drinking cold water out of glass instead of stale stuff from a plastic beaker.

Sally and I enjoyed the brief company of Nick and Marion Symes who brought a casserole over. We had a short walk, I had a nap.

Time for a kip

Marion, me, Sally and Rosie

Then later we enjoyed our own company, re-watching David Attenborough's new TV series (God, those goslings falling off that cliff!) and a re-run of the first series of Sherlock.

Despite Sunday evening (tomorrow's chemo) looming large on the horizon, I slept in, enjoyed the extra hour of being lazy as the clocks went back, soaked in a luxurious lavender bath, had my first proper boiled egg for weeks and in no time Tom had arrived from London to stay for the day, night and tomorrow (he's now on half term as is Sally) sorting out the log burner and getting the house nice and toasty.

I deliberately kept visitors at arm's length but was delighted to see David Robinson on the doorstep with some DVDs and having time to stop for a mid morning coffee. He and Sian have been really good to us, looking after Rosie, turning heating on, cutting grass and hedge etc. Sally went and played tennis for an hour or so while Tom and I spent a lazy time listening to music and chatting.

Tom, me, Zoe, Sally and Rosie

Zoe and her partner Cassie came over at 1.30pm and we enjoyed a delicious traditional roast pork lunch - unlike two weeks ago I was really careful this time not to overload the system. We were missing Lizzie, which was a real shame, but nonetheless had a lovely lazy Sunday eating, strolling, watching Notting Hill for the umpteenth time (love that film) before going back to hospital at 7pm. I even forgot which Chemo Day I'm on.

Exeat over. Resigned to being fixed to Horace soon, a sleepless night and some lovely cocktail of nasty stuff tomorrow. But happy, relaxed and ready.

Oh, and latest count for the fundraiser is a huge £2,160 + gift aid. Staggered.

Night night, all, love from Rosie...

Chapter 6 - Ups and Downs

Well, I knew it was going to be a rollercoaster and I have the feeling that I'm only just started on the ride.

Chemo Days 3-7 have passed, Sunday to Thursday, fairly uneventfully, except for a painful lumbar procedure on Wednesday in exactly the same, bruised spot as two days before. I haven't been sick (they give me anti-sickness tablets well in advance) and so far the side effects from the R-CODOX part have not been bad. Just getting used to the routine, to the lovely staff most of whom I now know by name.

Home seems a distant memory but becomes a reality again as soon as someone posts something on Facebook. For instance, David Robinson cut our grass and posted a pic of the result, and he has sent me pics and videos of Rosie playing in their garden. Keeping in touch with reality is important, more important as the days and weeks go by.

The food
It's a bit like a comfortable house arrest here. The food isn't too bad, although I am getting the measure of which meals fare better on the long distance route from kitchen to me. I don't order anything crusty, it's unlikely to be anything other than soggy once it arrives. So hotpots, cottage pie, chicken sweet & sour etc all good, but 'crispy' potatoes taste like mash.

Taste is another thing that is starting to be affected – I know I'm expecting it to happen so I am probably talking myself into it but I seem to have to sprinkle salt and pepper liberally to get any flavour.

Wee-ing for Britain
Sunday I started to wee for Britain and Monday wasn't much better; night times are difficult anyway with steroids to keep me awake, and the constant wees are a bit of a nuisance. But it's all part of the 'flushing out' procedure to get rid of the toxins and tumours that the chemo has attacked and needs to get rid of. I understand the kidneys can get blocked quite quickly with all the debris so it's important to keep it flushed through.

A Word for our Sponsors
All in all I won't have anyone knocking the NHS when it comes to this kind of treatment. 24 years ago Sally and I witnessed a similar, quietly efficient example of care when Lizzie, Zoe and Tom were launched on an unsuspecting world and the NHS cared for three little three red, squealing scraps like they were gold dust. There may be woeful lacks of communication, little in the way of 5-star comfort, and an acute staff shortage on occasions but all in all this bunch are fantastic.

I have got to know the senior guy on his rounds, Dr Davies, and his entourage of junior docs and students; the D3 ward nursing staff who are superb and who go out of their way to be cheerful in the face of adversity; even the cleaning staff bounce in with a smile.

Wifi
The big downside to being here is the lack of wifi as standard. I can see at least eight nearby hospital/uni routers, none of which I can access. Calum McDonald Wood, Annie Bishop, Judy Chatwin have all championed for me to have access but to no avail thus far. So Annie suggested directly contacting the CEO of the hospital trust, Fiona Dalton and explain my situation – that without wifi for a 12 week stay is unreasonable and unfair. Within 12 hours I had a truly sympathetic reply and twelve hours after that I can at last dispense with my 3G dongle and get some speed on the connection, making updating of blogs with pics possible and allowing me to set up a Virgin Giving Page for Lymphoma Association as promised and as people have been requesting.

It's a shame, though that others are not so fortunate or unable to apply a little pressure. The nurses cannot understand why they have raised money for a ward router but are not allowed to pursue it!

Perhaps if some NHS managers and those involved in the ridiculous contract with Hospedia (or even Hospedia themselves) tried their own clunky old system out by sending a few nights in a hospital bed, things might improve.

A Totally Horrible Night

All going well then - until last night (Thursday 23rd) - Nick Symes came in earlier, then Sally and her father (it was his birthday) and finally Guy Nicholson, an old employee of mine and good friend (who has suffered from cancer himself) brought in a splendid art book for me to doodle in and we chatted about old times.

For the first time for a few nights I was unshackled from Horace/Sally, no steroids to keep me awake, so I watched Sherlock Holmes on DVD - or at least I watched half of it before nodding off so gave in gracefully at 10.30 or so to try and get to sleep. Sleep I did, until in the small hours around 1am came  a light tap on the door with a "David, I really hate to do this to you but we need your room for an emergency". I thought I was dreaming at first but no, it was for real - so we set about packing up all my wordly goods in carrier bags, taking Get Well Cards and my family pic off the wall, gathering all my washbag, clothing and literally everything I came in with. Perched on my bed, with numerous bags and feeling like hell, I was wheeled out of my cocoon and down a floor to what, in comparison, felt like a morgue. Stuck in a corner to fend for myself with five other snoring, bleeping, groaning, coughing men and their Horaces, I made the best of a bad job, shoved the bags under the bed and watched the hours click by until 7pm.

I felt abandoned and incredibly lonely; I haven't felt quite like that since being chucked into boarding school at the age of 10, or spending one night in Winchester Hospital children's ward with suspect appendicitis at the age of seven.

I managed to preserve my dignity, used the shower and toilet facilities (the loo was blocked which was lovely) and was determined to have a word with someone.

That someone came in the form of the Ward Manager – then a Matron – then the docs on their rounds who between them couldn't have been more apologetic. I was told my treatment is going well, what's happening next and that I would be back on D3 today – albeit on a open ward – and allowed home for a 24 house respite tomorrow (Saturday) before the really intensive chemo stuff starts again Sunday night/Monday morning.

This was music to my ears and when Sally came to see me at 10.30 I was so emotional. I never thought that the idea of spending a night in my own bed could be so exciting.

So back on Ward D3 by 1pm and lots of visitors this afternoon. Tried to update the blog a couple of times but was interrupted by various things including a trip down two floors to Ultrasound for a scan to check my kidneys are working. It really only took all of ten minutes but the whole thing cost an hour and a half by the time the porters eventually came to retrieve me. It being Friday everyone seemed to be pushing off home and I had visions of being abandoned there until Monday when they come back in.

Despite being on an open ward, and a lot of the guys here are very immobile or poorly, the atmosphere is good and friendly and I'm pleased to be back. 

Look what the've done to Sally the Drip Pump!

And then, tucked away in the corner of the ward, I finally saw what the hostages had done to Sally the Drip. Thankfully she looks unharmed and was even retrieved to go back into service.

One final reminder – my Virgin Giving page for Lymphoma Association can be found here. Can you spare a tenner for this very worthy cause? It looks like at last count tonight we are up to a staggering £1,880 including Gift Aid. WOW. Keep it coming, guys.

Chapter 5 - The Rollercoaster Ride Starts

Sorry about the off-the-shoulder number.

An Insincere Apology

Having re-read the first quartet of blogs I notice that they are rather me-me-me, a little self-centred and even irreverent? I felt bad about this for a minute or two then thought Sod It, that’s what a blog is for, isn’t it? Bev Siddle from RAODS actually prompted me to write it properly rather than only post ambiguous facebook postings and I’m grateful she did.

So no apologies, this is my personal diary which I am happy to share and if it doesn’t work for some then that’s tough; I have come to the conclusion that this blog is every bit as important a part of my treatment as the 12 tablets I just swallowed (washed down with Diet Coke…), the numerous i/v chemo drugs, stabs, needles, steroids and fluids. That and the positive attitude readers have kindly attributed to me. It’s part of the cure as far as I’m concerned.

The Treatment Schedule

As seen in Part 4, there is a schedule to this chemo cycle; unlike some chemos which can be done as outpatients and then you go home until the next one, the nature of this régime is intensive and keeps close watching on a day-by-day basis. For what it’s worth, a rather poorly taken shot of the R-CODOX-M treatment cycle (the one I am on now) is shown, so you can see just how difficult it would be to monitor as an outpatient and react quickly if necessary.

The first and third cycles, R-CODOX-M.

The problem with Burkitt, or Burkitt’s Lymphoma, is that it is extremely fast growing and aggressive. That means that it has to be treated with great urgency before it has the chance to spread and grow into other parts of the body, following as it does the lymph system which has mini HQs all over the place. The original tumour which alerted to me to the problem and that was surgically removed just three weeks ago, probably grew in a matter of a few weeks from nothing. It is apparently the fastest growing cancer known to man.

That’s quite frightening of course – the thought of thousands of the little buggers rapidly multiplying many times over as I write this is more than a slight cause for concern.

But apparently the fast-growing nature of the cancer also makes it susceptible to treatment, providing that treatment is delivered intensely, quickly and monitored carefully. Burkitt’s is ‘highly curable’ – whatever ‘curable’ means in the context of words like cancer, remission and so on.

But if it buys me ten years that would be like receiving gold at the Olympics.

So Saturday 18^th was Chemo Day 1, and an important one. It was a long day, starting with Rituxamab, the antibody i/v designed to flag up the cancer cells and  administered slowly over several hours – done slowly because of any allergic reactions to the infusion. This reaction I duly got, within an hour – I felt fine one minute then as though I had been hit by a truck in the tummy the next, especially around the area of my surgery. I got a really tight chest, found it difficult to catch my breath and was a bit panicky. But they were expecting it, administered something to relieve it, stopped and restarted slower and by mid afternoon we were sort of back on track.

An hour off, then a series of CAV chemo drugs over the next hour, hand-pushed through syringes the size of garden hose. No problem there. Finished about 7pm…

Next four days – chemo-wise at least – Days 2-5, are by comparison a doddle – just a ten minute ‘push’ of C only. Not much more to say about that, really.

Monday 20^th,  Day 3, a tricky day in anxiety terms. I was told I would be having my first IntraThechal injection into the spine, a bit like an epidural given to women in labour. This is to inject chemo straight into the well protected spinal fluid so it can get to the spine and brain. Having had a fairly uncomfortable bone marrow biopsy only a week before and with the thoughts of large needles into the back filled my imagination with horrors and trepidation. That would have been ok to deal with but they wheeled me down to have the procedure at 2.15pm for a 2.30pm slot. I didn’t even start until 3.40pm by which time I was a nervous wreck. The procedure itself wasn’t too bad but my BP and pulse rate must have been through the roof.

The delay caused a knock-on effect with visiting; Helena Gomm, fellow thesp, popped in to see me 10 minutes after I had left my room, which was a bummer – a wasted journey for her and sad for me to miss her (but she did leave me a good bag – thanks, Helena!). Then back on ward abut 5pm for ten minutes before visitors Nick and Marion Symes arrived, later as advised but followed closely by sister Sue and brother in law Bob. As I was told to lay flat on my back for at least an hour, I had to try to conduct a horizontal party with four guests, make meaningful conversation and try to eat my food which arrived early. Tricky.

So for the next one (Wed 22^nd Day 5) I am going to see if we can play better: no waiting around in corridors, anxiety treatment, no visitors ‘til much later.

Horace and Sally

Horace, the faithful old retainer of a drip pump, attached to an equally up-for-retirement trolley, became my faithful companion during these first few days. Until – horror! I was allowed time off for good behaviour, went for a ten minute walk and returned to find him hijacked. Horace was replaced by Sally (so called because she was inspected and cleaned by someone called Sally, nothing to do my with my Sally…). Sally has a very short battery life and bleeps incessantly when unplugged from the mains (which is often).

For the first few days they have kept me on i/v fluids  to keep me hydrated and to keep the flushing out procedure going well. So first Horace, then Sally, have been very close friends.

My new view - the new hotel for parents with kids in hospital

Moving Home

I’d only been in my room barely four days when I was moved to another side room to make way for an A&E case. Luckily Tom was visiting at the time so helped me move, not a lengthy job. Nicer room, the shower drain works (as opposed to the first one which spewed water across the ensuite floor, under the door and halfway to the bed and which Tom had brought in a Philips screwdriver so we could fix it) and generally happy here except the 3G signal is now weaker and keeps dropping out…

Lizzie put my cards up on my new wall with White Tack (they keep falling off but that’s another story) and I am surrounded by everything I need – copious crosswords and Sudokus to cock up, books, DVD player for the laptop, ipod and headphones, important lines of comms with the outside world.

I have settled into a routine of sorts – early mornings mean early morning updates to family and friends and facebook. Read for a while, strip my own bed (well trained), help with my own breakfast prep, have a Horace-free shower, update the blog, keep notes and go for little walks to keep stretched.

Sally and Lizzie were in every day until Monday which was great – sadly both had to go back to work on Monday/Tues but am seeing Sally again tonight (Wed 22^nd) and I speak to all the kids at least once a day. I am blessed with a supportive family and network of friends, lucky me.

Weight watchers

My ‘normal’ fighting is about 85kg (13st 5lb). In the past week this has fluctuated, mainly because of rapid fluid retention over the weekend and then being given a carthorse strength diuretic to counteract it on Sunday night, from a whopping 88.5kg down to today’s 79.5kg. During a 12 hour period between Sunday and Monday I gained 2kg, lost 4kg/3.5 litres of fluid and filled 13 urine bottles.  It seems to have settled down a bit, thank goodness.

That’s me up to date…at last… Part 6 will follow in due course if anyone’s still awake.

BREAKING NEWS: Sally, the drip pump, has gone AWOL. No ransom note received as yet

Chapter 4 - to Southampton, and beyond!

An Ill Bloke’s Blog – Part 4

To Southampton – And Beyond!

The seven mile trip in an ambulance from Winchester to Southampton General, at 4pm on a grey Wednesday afternoon, took the best part of an hour but the delay was nothing to do with the copious amounts of forms they had to fill in before we left. Just sheer weight of traffic; I tried to persuade the ambulance crew to let me feign an attack so they could blue light us down but they didn’t seem too keen. Spoilsports.

But to be honest if I’m going to be there for some while there’s no hurry; it’s not like I’ve got to get home for tea.

Eventually reached my side room in Ward D3 – so nice to have my own space without having to listen to or share everything with others. The plan is I have the room for the duration, or one like it, unless an emergency isolation requires me to be moved. There’s a view of sorts and it faces East so I get the sun in the mornings. There’s plenty of ventilation, light, ensuite facilities, comfy chair and room for my clobber. BUT NO WIFI – this deserves a blog entirely of its own and will get one in due course. Quick explanation is to do with a dodgy contract between the hospital and a company supplying TV/telephone/internet bundle to the bedside. But it’s archaic and expensive and means you can’t connect your own devices like phone, laptop, iPad etc. Quite useless. Phone calls out to 01, 02 and 03 numbers are free but incoming costs the caller 50p a minute, so forget that one. Also forget calling mobiles, that’s completely out of the question unless you work for O2 or Buckingham Palace.

A Room with a View (of sorts)

But at least I have 3G of sorts and after several typically frustrating phone conversations with Vodafone (“Press 5 to be inexplicably cut off”) I managed to top up my 3G dongle with a tenner’s worth of data. Of course, being unused to anything but a constant wifi connection, as soon as I turned the laptop on it automatically downloaded stuff, updated Dropbox, looked for new software and used up 20% of my valuable allowance in no time at all. Thank you, Matt Fellows from work for helping me sort that one at least. I also turn it off when I don’t actually need it.

My first evening at Southampton was a quiet one. I was honoured to receive a visit from Prof PeterJohnson, the Big Boss, all on his own (normally doctors come in groups of at least seven in case they get picked off in the corridors by predators). He is such a nice chap – articulate, friendly, informative and obviously glad to have a case of Burkitt’s in the place, having remarked to a colleague that they hadn’t seen a case of it here for a year or so. It is rare, but being a Centre of Excellence they attract the more unusual cases from all over. The good Prof even managed to sort me a drip trolley, the nurses having rather amusingly attached Horace, my drip pump, (and therefore me) to the bed, thus making it impossible to visit the loo without dragging the bed in with me.

The Prof explained what will happen – in brief, non-technical layman’s terms, the treatment follows a schedule:

The first cycle is R CODOX M and the initial letters stand for the chemicals used. Trouble is they sometime refer to this as CAV or VCA. Confused? Moi aussi.

Day 1 – a pre-chemo drug (R) that flags up the little bastards so that the chemo drugs (CAV) knows what to go for. Pretty slow (4+ hours) because of possible allergic reactions. (As you will see from the next blog instalment I did get a reaction, it felt like being hit by a ten ton truck so they stopped, hit me with something else to relieve it then restarted nice and slowly). That’s followed by three different chemo drugs (CAV) all administered by the bedside, all in all about an hour.

Day 2-5 – Just a ten minute portion ‘push’ intravenously of the CAV, just the C.

Day 3 or 4 and repeated again a couple of days later – Intractechal injection into the spine to get chemo in, as the body has a clever cellophane wrapper which protects the spinal cord and brain, so this gets around it. Again, more in episode 5.

Day 6-9 there’s not a lot going on until around Day 10 is to do with putting in another chemo drug beginning with M which is very intensive and strong, so once in there for a while it has to be flushed out quickly to avoid it doing too much collateral damage.

Note the sexy surgical stockings...

Depending on how my body reacts to all this – and making sure the renal system is working well to keep everything flushed through – my blood cell counts will drop. Red cells can be replaced by infusion, as can platelets which make the blood clot, but the poor little white soldiers that attack bugs in our bodies and prevent infection don’t fair so well and before they start coming back, there is the danger zone for infection and hence the hospitalisation with isolation, quick access to antibiotics and high dependency treatment if necessary.

Approx Day 13 they start giving growth treatment to encourage those wee white cells to grow again, before starting all over again on Day 22 with the next cycle. That’s called R IVAC and I don’t know much about it yet, except the R is the same one as in the first cycle.

So a cycle lasts three weeks and there are four of them altogether. One stops and cycle no. 2 starts which is a bit different from Cycle No. 1 (see above). Repeat so Cycle 1 becomes Cycle 3 and Cycle 2 becomes Cycle 4 and you have a 12 week schedule.

After that – hey presto! – I am cured. At least that’s the plan. The prognosis for this type of Lymphoma is pretty good and that’s where I am aiming. I have always aimed high in case the arrow drops a bit on the way to the target.

To think of alternatives is, frankly, pointless!

My Grade 3 - thanks, Louie!

Lighter moments

I will probably be sterile afterwards – oh dear – and will lose my hair as part of the process – but having shaved my head deliberately two years ago for a role in a play called A Bolt from the Blue, in which I played a bald trichologist (hair specialist) I know what I will look like (except a bit thinner and more haggard this time I expect) so I enquired of Louie, a delightful Filipino healthcare assistant how I could get my hair cut, which I had deliberately been growing for Cheriton’s A Month of Sundays. He said I could get it done in the hospital but if I wanted a grade 2, 3 or 4 he would bring his own clippers in and do it himself!

“No need” I said, “I happen to have my own beard/hair trimmer with me!”.

So after laying a pristine white NHS sheet on the floor he duly gave me a grade 3 haircut. A fine job, the best, and certainly cheapest, haircut I’ve had since I was shaved off for Bolt and raised some dosh for Naomi House into the bargain. Not sure I will be able to raise any money in sponsorship for this one but there are ways and means of raising some money for The Lymphoma Association which I am looking into. David Greensmith, ex Cheriton resident, plus David Robinson, Sian Tabberer, Paul McTaggart and I have all promised to kickstart a fundraiser. Good will prevail!!! I sincerely hope to live a long time after this too, as I might be a bit miffed if we raise £1000s and don’t. Now that really would be annoying.

My next job is to set up a Virgin Giving page for The Lymphoma Association and I will send a link once this is done.

Support

I’m not a religious person, having always striven to be a Christian with a small C, but I do hope, once the treatment has finished in three months’ time that there is a higher authority who has ticked the box for me saying “this one is cleared and let off for good behaviour”. To quote a line from AMOS, “if I get to heaven and find they’ve been lying, I shall ask to be put on thunderbolts”.

So it was with a little guilt that I politely refused the offer of a visit from the Chaplaincy. I would rather spend the time with my family and friends, to be honest. No offence to my more devout friends, it’s just how I feel.

So I am settled in to my new home, have a rakish new haircut, a wall full of Get Well cards and the phone and laptop doesn’t stop with Facebook, Twitter, emails, phone calls and SMS messages. I appear to have recruited an army of supporters to help  me in my battle, and I am grateful to each and every one one of them for their rigorous and unequivocal support.

More to follow in Part 5 (if you can take it)…soon.