Chapter 12 - In which we receive some good news

Very soon I shall be as bald as this again.

What a difference a couple of days can make: only two days ago I was suffering a real loss of appetite and general apathy/lethargy. Now, with blood counts rising and general fitness levels improving daily, I feel almost 'normal' and ready for the next challenge.

The Drain Cleaner
Of course there has been the normal curved ball or two - for instance yesterday (Wednesday) my brand spanking new PICC line decided to block up. Not a good start. So Tamsin, one of the most patient and caring of the staff nurses here (not that any of them aren't I hasten to add) spent a happy twenty minutes gently pushing what can only be described as a medical version of drain cleaner - or the sort of stuff I used to clean a motorbike exhaust out with - through a syringe into my line and gently sucking it back again until at last some blood appeared and we appear to have unblocked the blockage. Well done Tamsin.

She also explained that the old style lines used to require a 'hep-lock' after every use, a chemical Heparon pushed into the line - but not into the body - which sits there and keeps the line clean. So they have adopted this for my new line too, in case it happens again. It's important to remove it before using the line so I need to remind everyone, much to their bemusement; better to overstate the case than have a dose of it though.

How am I in myself?
A good question and one which made me smirk a little, being a line from the now abandoned A Month of  Sundays play I was to be in in a couple of weeks time at Cheriton.

"How are you in yourself, Dad?" my stage daughter asks. "In myself?" I reply quizzically. "Well, in general terms" she clarifies. "Oh, in general terms. In general terms, much the same, mustn't grumble". It's a lovely little sarcastic sequence which taken out of context doesn't mean quite so much but made me chuckle when asked it for real.

What was meant by this was how am I coping mentally, which is a fair question. The answer is I'm just getting on with it in the only way I know. The fact that this treatment has a huge success rate automatically gives me a target and makes my mental state much more buoyant; if I thought I was going through the grinder for a <50% chance of success I might be thinking very differently indeed.

The other interesting question was "What's your main concern?". "Survival" was my instant retort. "Of the treatment or the cancer?" she asked. "Both" I replied. After the briefest of pauses: "Well if you survive the treatment you'll certainly survive the cancer". I'm not entirely sure whether to be reassured by that or extremely concerned! I know there are some people - not many - who have died from the treatment, or rather third party factors like infections, but they are thankfully rare. I trust in (God/someone) that on this occasion I am not one more rare case. And so we move on because to dwell on it would be pointless.

Some asides

1. My hair is starting to fall out. Three weeks they said, and they are spot on. By the weekend I could be as bald as when I did A Bolt from the Blue a couple of years ago. So do I resort to wearing a fireman's helmet, a blonde wig or just go topless?
2. I have been quite thirsty the past couple of days, having spent a couple of weeks sipping. Downed two cans of ginger beer, a latté, a hot chocolate, several glasses of lime and sparkling water and more coffee. Odd.
3. Because both my upper arms are incapacitated (left with infection, right with PICC line), they have been finding new and innovative ways of taking my blood pressure. It is possible to take it on the lower leg for example, if they can find a pulse. Not entirely successful - one reading came out as 210/120 which in anyone's book is a tad high. The most successful is to take it on the lower right arm with a manual monitor with a squeezy thing and a stethoscope. One staff nurse commented that in ten years she has never ever had to take a BP like this. I find this difficult to believe, considering we only have two arms.

An overseas visitor
Vikki, my niece who lives in Holland, jumped on a plane at Schipol (Amsterdam) early yesterday, waited on the plane for an hour for the October fog to lift, an finally made it to Southampton where Sally picked her up and brought her over. Lovely to see her, not having done so since her husband's sad demise. All in ll a brave thing for her to come onto an oncology ward at all. We all escaped to the café and enjoyed lattés, clokes, crisps, rolls and hot chocolate - and a lot of good humour and catch-up. Sue, her mum/my big sister, popped in later (complete with an old photo album of when we were small kids in Alresford) and she picked up Vikki from Southampton for a curry and rare night of her company sans enfants.

The Cradduck family circa 1954 - Steph, me, Mum, Dad, Sue

Good news arrives
Just when I thought the best I could hope for this weekend would be the odd few hours at home during the day, Marie-Christine, one of the docs, explained that they are changing my antibiotic from a three-times-a-day/1.5hr drip to a similar one which only requires one half-hour drip every day (thinks: could they not have given me this one to start with?). That means I can go home tomorrow (Friday) after my antibiotic and intrathecal - yes, that lovely needle in the spine procedure - and providing I come back in at 10am on Saturday and Sunday for my antibiotic they don't want to see me until Sunday night.

I know I am in the right place receiving the right treatment but during this 'recovery' phase it's hugely important to me to have some time at home; it surely has to be part of the treatment in a subtle way and bound to make me feel better 'in myself' - the thought of Rosie bouncing on me, of my own comfy bed, a proper meal or two, a walk in the fields - what a fantastic thing to look forward to. I know it's the calm before the storm and I shall get that 'exeat' feeling again on Sunday night but it's worth all that and more.

And finally, more good news!

The fundraiser, my Virgin Giving page set up to raise £5,000 for Lymphoma Association, has been gradually getting bigger and, as always I am in awe of the number of people who have stepped up to the plate. Yesterday my eyes popped out of my head, though - my bosses at First Option Software where I work have made a huge, generous donation in the form of £1,000 which is so 'above and beyond' I am completely gobsmacked. Thanks, Matt, Mike and Richard for your awesome contribution. This only leaves about £800 to reach the target. Amazing.

If you would like to contribute to this very worthy cause, click here.

Chapter 11 - In which we take 2 steps forward and one back

Greetings from happier days (as Lord Emsworth in Oh Clarence! May 2014)

It's now four days since my birthday but I'm loathe to take down the balloons and banner, they make the place a little more cheery. The fact that it's four days since I last blogged (is that the correct past tense for blog? Sounds a bit rude) is not coincidental. I have had new challenges to deal with since then.

The Clot, The Infection and the Antibiotics
The clot must be me for thinking I only have to deal with the chemo and its side effects. Seriously though, the blood clot in my arm seems to show no signs of going away anytime soon. Although I'm not sure how they determine when it has since no-one has come near that arm with an ultrasound scanner since they determined I had one. Although it is in a 'superficial' or surface vein, there is always the danger with a blood clot that it can shift into a deep vein and find its way to important places eg the heart. That's not so clever so it's important to keep the anticoagulant injections going; these, along with another injection are administered daily to my already bruised and scarred tummy. And the side effect? Spontaneous nosebleeds, often when I start eating. And because of the anticoagulant it takes ages to stop. I am likely to have to go along to the Ear Nose & Throat people to see if they can 'zap' the offending blood vessel in my nostril, which doesn't sound fun.

The good news on the infection in my arm, around the site of the old PICC line which had to be removed, is that the huge swelling I experienced over the weekend when I could hardly bend my arm or make anything like a fist, has now come down to manageable proportions - still there but now acceptable. So the antibiotics are working but I am now told that, like all antibiotic courses I must stay the distance with this one (involving three long drips every day/night) for ten days. That takes me past the weekend when I was dearly hoping to go home for a couple of days and nights. The days are still possible (as long as the infection doesn't worsen and I don't succumb to any others) but not the nights as I will need to be connected to Horace and he doesn't travel as far as Cheriton. Bummer. Bit of a blow but to be expected, I guess.

The other main side effect of very strong antibiotics like this is the inevitable diarrhoea which you will be pleased to know I won't go into the details of but you can guess for yourself how pleasant that one is.

Another, more minor but rather upsetting side effect is loss of appetite; I don't feel like ordering food because I know there's a good chance I won't be able to eat it. I force myself to eat what the body probably needs (which is not huge at the moment). My body weight seems to have stabilised around 76kg (11st 13lb) - my fighting weight is normally 85kg (13st 5lb). I haven't been this light for 30 years...

My new birthday slippers (thanks, Lizzie!)

The Treatment
Of yes, I nearly forgot that amongst all the side issues going on. We are now on Day 17 or so of 21 and this is the recovery phase before we start again on the R-IVAC (cycle no 2) regime next week. I am reliably informed that it is not as onerous as the first one I've just been through. I hope that's right. My blood levels are all rising again and looking good, my risk of infection decreases every day I improve and they are generally happy with progress on that front. It's a balancing act at the moment with all the other stuff but one minute I'm on fluids to increase potassium levels and rehydrate and the next I'm not. All leads to an exciting life.

The PICC line
Having had the old PICC line removed last week I was relieved yesterday to go and have a new one fitted in my other (right) arm. We (me, the nursing staff and everyone who goes near it) are on pain of death to look after this one and ensure that it carries on working well, doesn't get pulled etc. I have run out of arms to put them in now. And my poor old right arm has had enough of cannulas and blood removal via needles; my veins, which normally pop out of my arm with prominence, have all retreated at the sight of another needle and need time to recover. Needless to say they couldn't touch my left arm at all for this.

The PICC line allows for blood to be removed and up to two different i/v drips to go in. So much easier and more comfortable. So fingers crossed we don't have a repeat performance of the left arm (it is very rare apparently. But then so is Burkitt's and I've got that).

Visits

Me and Kevski from Winchester Today

Last week - certainly up until the weekend, I deliberately kept visitors at arm's length; not because I didn't want to see anyone - although I tire easily - but mainly because the fewer people that come into contact with me the better from an infection risk point of view. Steph and Mike made a brief visit (sorry it wasn't longer, Steph, but it was a bad time), Sally came on my birthday and Saturday (with Lizzie and Matt, up from Devon for the weekend), Zoe and Cassie came on Friday too as reported in last blog post, Lizzie and Matt came again on Sunday en route to Devon, Kevin Gover trained/bussed it from Winchester yesterday (Monday) and today old family friends John & Julia Bryant (John and I once shared a racing mini for a season in the 70s) are due at 1pm, Casie and Dougal (who bred the lovely Rosie) are also coming in, plus designer friends Emma, Martin and Suzy from Winchester are coming in this evening. So a busy day today. I hope I don't get a nosebleed whilst they are here - or worse still get whisked away to ENT and them find me missing.

Tomorrow, my niece Vikki, who lives in Holland and whose husband Chris so tragically died of a brain tumour a couple of years ago, is making her way over to see me and Sally is picking her up from the airport. So I'm a lucky guy on the visitor front. I just have to pace myself: too many people, too much dancing on the tables, and I wear out quickly. My general fitness level is at rock bottom, I'm going to have to join the gym and get cycling/walking once I'm out of here or I shall waste away.

Update on the fundraiser
I am acutely conscious that my long suffering facebook, twitter and other friends and family have already been extremely generous - the running total stands at about £70 shy of £3,000 (plus Gift Aid) - so I reluctant to keep banging away asking for even more. For this reason, Kevin Gover is going to write a piece in his online paper, Winchester Today, as well as it appearing in the November issue in print. Good on you, Kevin.

I have agreed with the Lymphoma Association that the funds will not just go into a general sinking fund but will be used to part fund a specific initiative: GP awareness of Lymphoma symptoms through a series of online e-training programmes available for them to become more acquainted with the specifics of Lymphoma. I gather it has struck a chord with many people - after all, early diagnosis is key to the success of treating successfully nearly every cancer. So anything that can be done to improve that early diagnosis (crucial in my case) has to be good news.

If you have already donated, a huge thank you and you now know where your money will go; if you haven't, then I appeal to you to dig in your pockets to find a tenner and go to the Virgin Giving page and spread the word by whatever means you have available to you. For instance, Sian Tabberer from Cheriton is having a 'dry' November and putting £2 a day into a pot for the month instead. Lizzie's boyfriend Matt and his brother Kyron are intending to raise money by shaving their heads (I know that feeling, guys!) and a couple of people growing 'taches for Movember have agreed to put some of the proceeds towards the Lymphoma Association; after all, it affects men too.

A final reminder of that link and I'll stop pestering - http://uk.virginmoneygiving.com/team/anillblokesteam

See you soon!

Chapter 10 - ThirtyOneTenFiftyThree!

It's my birthday! and for the the first time in a month of being in hospital, instead of saying "ThirtyOneTenFiftyThree" several times a day before receiving anything from Yellow Peril to the humble paracetamol, I just said "Today!".

To be honest, I'm sure other people must be born on the same day, it hardly seems conclusive proof of identity...

Nurses Beth, Lauren and Louie serenading me at 7am!

Happy Birthday to You, Happy Birthday to You...

Does everybody who has a birthday on the ward get this treatment? The night staff - or three of them at least, Beth, Lauren and Little Louie - arrived bearing balloons to decorate the walls and Horace, plus a birthday banner, a badge that I "must wear all day without fail" and a cheery song! How touching is that? Thanks, guys. And you made over 90 'likes' on facebook!

The Curate's Egg

My official birthday (I've decided to have several this year, like the Queen) was a Curate's Egg Day: good in parts. Highlights included a long visit from Sally in the morning bearing cards and gifts, including a cake made by David Robinson using a current brew of Flower Pots Porter;

being allowed to part company with Horace long enough to change my shirt and have a quick wash; and a visit from Zoe and Cassie - although it has to be said that the visit was very nearly completely spoilt for all of us by the arrival at 3pm (when visiting hours officially start) of two porters to take me for a chest X-Ray. Zoe was very understanding and they came down with me and back. Then came a series of other interruptions for blood tests, injections, swabs and a particular duty doctor who seems to take pleasure in interrupting anything that looks dangerously like a social get-together.

Sally and me - one of the big highlights of the day. Oh, and Horace.

As is the norm these days, my day starts fine and gradually deteriorates so that by 6pm and food arrives, I neither have the inclination nor the appetite to eat another large meal. I am just not using up any calories and can't taste a lot in any case (one of the side effects of chemo). So it was that on Thursday, feeling particularly down, unsociable and not wanting to do anything except hibernate, I made the error of ordering a chicken mayonnaise sandwich imagining something like the kind of scrummy coronation chicken sandwich I often make for myself. What arrived were two thin slices of indifferent bread with a dry slice of horrible processed chicken between them. Live and learn.

To completely over-compensate for my birthday supper I ordered pizza and chips. Can't really go wrong there, can we? Or course we can. It hadn't arrived by half an hour after everyone else had had theirs, so on querying, they eventually found my meal on a trolley and presented my with it. I don't mind cold pizza as a rule but I do draw the line at cold chips. Shame the ice cream that followed wasn't cold as well!

Making Progress

Treatment wise I am making progress. The Methotrexate left in my system is almost down to where they want it to be so am only on the fluids a bit longer, certainly overnight. I have been given 6 litres a day since Sunday night.

I have started the growth factor to replenish my depleted white blood cells. I've had two blood transfusions so my haemoglobin levels are up again, and on Saturday morning had platelets to top those up as well.

One very swollen hand on the end of a very swollen arm.

My problem now is the blood clot in my left arm is still there (and will continue to be until the anticoagulant injections start to break it down) which in turn is preventing the excess fluids circulating my arm properly, causing swelling down to my fingers. I'm awfully glad that I saw it coming and removed my wedding ring a bit sharpish. Whilst on the fluids this is just exacerbating the problem and I can do little except take paracetamol and keep my arm elevated ( great for the arm, not so clever for the blog). 

Saturday breakfast saw me crack open the delicious ginger jam Zoe gave me yesterday, and also the end of my constant relationship with Horace and fluids - for this treatment at least. By late afternoon I have noticed a slight improvement in the arm and a more specific antibiotic has been prescribed, as they acknowledge there is also an infection around the site of the old line which may in turn have affected my temperature, thus occasionally delaying treatment like blood transfusions.

Now this may come in handy soon.

They came bearing gifts!

Sally, Lizzie and Matt arrived mid Saturday morning bearing more cards and gifts, including a great alpine hat for when I lose my hair, new slippers, John Cleese's autobiography and glove/mits for when I get home. Sally, meanwhile came bearing clean shirts and stuff - the essentials. I am so grateful she is there to look after me like this; it can't be much fun travelling up and down to Southampton, often at peak times on busy roads. She's so patient, too.

A lovely hour or so with them and then - lunch! Fisherman's pie, although I think the main ingredient was potato. At least it arrived hot and on time.

To round the day off, Nick, Marion and Anna  Symes arrived early afternoon and we had a good long chinwag/catch up. I am feeling so much better today without all that poison in my system. It makes conversations easier and simple things like entertaining less tiring and much more enjoyable. I must remember those dodgy days for the next time I have this treatment.

Practice makes perfect.

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.