Chapter 15 - "Oh and by the way, you've got Norovirus"

With thanks to Matt (and please don't sue!)

It is less than a week since my last chapter, but it seems an eternity. Partly because the days (and nights) can, and have, dragged and partly because so much seems to have happened since then it seems like another era altogether that I was at home, knackered and deaf in one ear, but soaking in the luxury of home life for a wee while.

Back to the hospital - again
8.30am Thursday morning for a blood test back at Southampton and possible/probably readmission seemed a bit harsh to Sal and me, having hoped for a few days with the kids at home to celebrate early their birthday. But we did as we were told and I was duly readmitted  to hospital after the initial blood tests show my blood count to be very, very low and my platelets only 17 (we need 50 to function normally). So I wasn't surprised. And of course, 'readmission' means repeating the mind-numbing pages of questions about allergies, next of kin, etc. Why can't they just assume it's me? I've still got the same hospital number and have to confirm my DOB, and often my name and address for good measure several times a day anyway. Crazy. What I hadn't expected was that instead of my nice, familiar Ward D3, I found myself on that same, open C4 ward I was on a few weeks ago in the middle of the night. Hrmmph. This isn't going to be fun I thought, and by golly I was right.

The upsides and downsides of a side room
It started with diarrhoea overnight (sorry those of you having your tea); that at least assured me a side room. Not a nice side room though, a side room with a rather obvious CCTV camera, no view (hardly any windows), decoration from Cell Block H - in fact altogether very reminiscent of a prison cell. Here I spent a miserable 36 hours. I developed a spontaneous, but copious, nose bleed around midday Friday which doesn't sound too bad but this one just didn't want to stop - presumably as a direct result of my platelet count being so low.

"Platelets. That's what you need. And some blood. We'll order them up".

But by early early evening there was no sign of either, only a couple of bags full of bloody tissues and me getting more miserable by the hour. So the young doc (Fraser, nice lad who won't mind me saying he looks younger than most coppers these days), took advice from ENT who sent down a pack of - well - tampons for the nose. This doesn't sound too bad but having one inserted in both nostrils (I was only bleeding from one) was initially very, very uncomfortable and then just awful because (a) the bloody one was leaking in no time and we were back to square one and (b) I couldn't breathe except through my mouth which as anyone with a nasty cold will know is not very nice.

Less comfortable than it looks. Don't try it at home.

A few more hours, the removal of the unnecessary pack, a new one inserted in the necessary nostril (still very uncomfortable), a kindly but probably nuisance call-out for an ENT specialist, and I was left, with an extra barrier to breathing in the form of a gauze under my nose tied behind my head to a night of utter misery catching snippets of sleep and having to wet my lips and mouth every five minutes to prevent drying out. Oh, but the platelets arrived! Hoorah!

This is not a night to go down as one of the best; in fact it ranks high up there with the Life On Mars night of a week or so before but for different reasons. Just replace 'nightmares' and 'vomiting' with 'suffocation' and 'diarrhoea'. Oh, and still total deafness in my left ear; not disastrous in itself but just one more candle on the cake.

A high point - two nurses persuaded me to move to another sideroom. This one has a window, fresh air and is altogether much more pleasant. One of these same two nurses made me a hot chocolate; how sweet is that?

A room with a view - of sorts. At least I can see out.

Gradually, gradually the weeping wad weeped pink rather than bright red, and started drying up. Saturday became bearable, or at least for me it did. For poor Sally, with her plans for a family weekend in tatters it was just starting to prove too much and I felt so helpless and to be honest with all the other stuff going on I too probably hit a low point emotionally. Sally, Lizzie and Tom visited on Saturday - making the best of keeping the family weekend a reality. Sadly Zoe couldn't make it as she had a lurgy herself so kept away.

Temperature spikes
Although my temperature has never gone above 38 in six weeks (I am willing to stand corrected) I suddenly developed a spike of 39.6 - enough to start a flurry of activity (although no doctors) with i/v paracetamol and antibiotics. This repeated itself twice more over the weekend. Obviously an infection there somewhere!

Sunday showed a gradual improvement - but I felt so tired, dead tired, dog tired... whatever the right expression is - this is real chemo fatigue for sure. Lizzie popped in on her way back to Devon and we cheered Sally up a bit by setting up Skype. At least it makes you feel one step nearer to being there in person.

Isolation
Monday morning - and my door was ominously shut tight. When everyone came in wearing yellow aprons, white gloves and a few with face masks, I guessed that something was up. It was broken to me that I have Norovirus, the winter vomiting bug, although it's not winter and I haven't vomited (thank goodness, now that could have been really difficult). It seems I have been harbouring three different infections; I feel like a leper. I was sent for a CT scan in readiness for the Big White Chief Docs' round on Tuesday and presumably to catch up with what's happening to me - and importantly the tumour cells - inside. To help this I had to drink a litre of fluid in an hour. At least mixed with orange squash it was palatable. Drinking beer was never this difficult. Two pints? Pah!

I was visited by a very dapper chap from ENT with an impressive head torch, who gently removed my nose wad (it having been in place for well over 48 hours). Surprising very little blood and no fresh bleeding. Fresh air again and what a difference that makes. He also looked in my ear, declare it full of wax (hence the hearing problem) - all sortable - and prescribed some more drops for an mild, or developing, infection.

A CT scanner - a very expensive doughnut but a clever bit of kit

The Great Plan
Tuesday morning and feeling great (not really great, just a shedload better). A wash, change, clear up, breakfast and lunch that went down and stayed there willingly. These small improvements mark a big change. The docs' round (still with yellow aprons and white gloves so I am still officially an Infected Person) was interesting and rather inevitable but the three interesting things were:

"We aim to send you home at the end of the week".
"Your CT scan is looking great regarding the Lymphoma".
"You're halfway through the whole thing and doing well. Don't worry if we bully you a bit, it'll be worth it".

Can't argue with any of that.

So with luck (FINGERS CROSSED), I make a speedy recovery over the next few days, get my hearing sorted out by those nice ENT people, get home for the weekend (ironically the kids' birthdays!) and then come back in on Monday to start all over again...hang on in there, Cradduck.

Chapter 14 - To Mars, Hell and Back

Life on Mars

Does anyone remember that zombie like state the Sam, the hero, was in when he was 'living' in a completely false world, knew it and could do nothing about it but act out the role given him?

Nothing epitomises that state for me better than the BBC test card with the erie girl who one night scrambled out of the TV to talk to Sam.

And what has this got to do with anything?

Well everything really, because where I went for a few days and nights while on R IVAC - the second set of chemo - was the closest thing to
living a dream/nightmare I have ever experienced. I was ready for the other side effects: acute sickness (despite anti-sickness drugs I had a battle to keep anything down, including meds), fatigue, loss of appetite (interestingly I didn't have the very sore mouth. My hair, which has stopped growing, is still there, bizarrely.

I won't give the blow-blow, day-by-day detail but I was unprepared for the vivid, slo-mo dreams, set in a giant film set like they used for Superman, in which I had a major role but apparently without any script or direction - more as an active onlooker - involving death, being buried underground, time travel over centuries, being a key player in a drama I couldn't alter, this I didn't expect. I also experienced mini hallucations and 'out-of-body' feelings.

The pic of the round light fitting here shows it in the middle of the square of roof tile, yes? At the time I took the pic, the light moved three or four inches one way in the square and tantalisingly back again. I repeated the experiment several times and each time it shifted without me making it do so.

Is this light fitting in the middle of the square?

Some Interesting Conversations
Sally and her dad came to see me after a day or so of this particular batch of drugs - according to Sally I "just kept changing the subject or answered the wrong answer. I couldn't decide if you couldn't hear or your mind was elsewhere."

Zoe said that Sally had described me as being "very confused and out of it, mentioning random things and going off on tangents and staring into space for no reason; quite an interesting visit". It must have been for poor old Ted, my 87yo father-in-law who is very deaf now. With him being deaf, me being deaf in one ear and me behaving as if I was in that famous Ronnie Barker and Ronnie Corbett sketch where someone answers the question from two questions before, he must have been rather bemused.

I can only describe this peculiar state in terms of the brain's ability to process something. Normally we do it, eg answer a question, at lightning speed and think nothing about it - but imagine each process slowed right down, broken down into its component parts like a multi-switch clicking through the whole process and giving you time to analyse the whole process bit by bit. Fascinating for me but pretty infuriating for the person waiting for an answer. By Friday (Day 4 or so of the 5 day chemo) my brain was probably working at 60% of its normal speed and capacity. By Sunday morning that had dropped to 10% and now, some four days later, I would day that I am still only functioning at 90% of proper cognitive speed and functionality.

Horace in overdrive

My body has taken a hammering too. Despite the ups and downs of fluid retention and overloading via Horace (at one point I had three separate bags going into me!) I am now down to 72.9kg. Basically in old money that is around 11st 6lb. I haven't been this skinny since before our wedding over 33 years ago. Of course it is all muscle that has gone - my legs and arms are pitifully thin and I feel constantly weak and tired. The one good thing is that my swollen arm is now pretty much back to normal.

Look - three fingers!

The pic shows me putting three fingers under my id band. A week ago it was tight to get one finger under. They are now able to get my BP from that upper arm. It had been taken on my leg and lower right forearm, neither of which was easy or gave an accurate reading.

Shore leave
It is now Wednesday 19 November and I had been given the wonderful news that I was to go home from last night (Tuesday) for effectively the rest of this schedule, so about a week to ten days. That was basically reduced to about 36 hours. They need to keep a very close eye on me at this stage so have to go back for a blood count tomorrow which is likely to show a big fat zero on certain things like red and white blood cells. So I fully expect to be kept back in when I go in tomorrow and connected up to a couple of pints of the red stuff (I had one lot of platelets before I left yesterday). I also have a CT scan scheduled for Friday when they will presumably get a snapshot of where we are with killing off the tumours.

So here I am again on the sofa, enjoying a few hours of being pampered, getting some real food, even though I can't taste it, and getting some nightmare-free sleep in my big comfortable bed. Thank goodness for Sally, who is my constant rock and soulmate. And Rosie for her unequivocal love. Thank goodness I have nothing else to worry about in my life at the moment - like running a business - and thank goodness for all those loyal friends and family supporters who constantly send me messages of joy and good luck. This is a voyage of discovery and even though I have journeyed the whole of it and have to go through it all again I suspect it will throw up new challenges, new obstacles.

Words of Wisdom from my Consultant:
"It's not surprising that you feel under the weather. You have just been administered some of the most aggressive and intensive chemicals known to man". Another medic, a specialist Lymphoma nurse said "If you survive the treatment you'll survive the cancer".

I do hope she's right.

Chapter 13 - The Great Escape

The late, great Steve McQueen in The Great Escape.

Lots of good-natured banter around the subject of my 'escaping' for the weekend - providing my body is behaving itself so lots of finger crossing and touching of wood laminate. The idea is (or was) to have my antibiotic (for my swollen arm which is now a lot better) and then make my escape around midday, armed with medication required for the evening including an injection in my tummy - the anticoagulant that is hopefully, gently sorting out my clot.

A Waste of a Good Satsuma
Apparently practising injections on tummies is not a good idea without having a stab (!) at a satsuma first. Grab a wadge of satsuma which resembles in size, texture and everything except colour the male human tum, and practise on that instead. Surprisingly easy really, but it's not recommended to eat the satsuma afterwards. Tried it out on the real thing too - and I am now fully qualified to give myself the dreaded injection each night at 6pm.

Sally wasn't able to pick me up much before Friday midday in any case and I was ready and eager to get out when she did arrive. A quick detour to pick up a bottle of Hendricks Gin for our long suffering friends and helpers Sian and David (perhaps a bit cruel on Sian as she is on 'Dry November' as part of the fundraiser) and it was Home Sweet Home once again.

No caption required.

The good news is that, apart from going back in on Saturday and Sunday mornings for my antibiotic, I am free to stay overnight at home. Brilliant news. The bad news is that as well as the antibiotic they also want to give me two blood transfusions on Saturday - each one taking two hours! So we re-arranged for me to go back in at 8am instead of 10am, though even then it would take five hours without any delays.

The family arrives
Travelling separately, each from work, Lizzie and boyfriend Matt arrived home - only for the evening as they are off early on Saturday morning. But good to see them nonetheless. My appetite, helped along by the temptation of real, tasty food, has returned and a chilli/Bolognese with tortellini and a warm bread roll was ideal, washed down with lime and soda water while we watched The Best Exotic Marigold Hotel on DVD. A lovely, gently amusing film, a bit like Quartet in some ways and again featuring the older set of great actors - Maggie Smith, Judi Dench, Bill Nighy, Tom Wilkinson, Penelope Wilton. A roaring wood burner, the dog, the family around me and a comfy sofa; what more could a chap want? Actually I remembered later - a soft bed and fluffy duvet!

Back on the road again, early in the morning.

An Early Start
Far too early, really - no time for any proper breakfast, just a quick shower and off back to Southampton. Of course it was rather inevitable that I was greeted by "We weren't expecting you 'til 10!" and other various comments about antibiotics not being written up for the morning, not mixed up, blood somewhere but not sure where etc. and an extremely frustrating hour and a half delay before I was hooked up to Horace. At this rate I could see me being there 'til mid afternoon.

The other inevitable news is that, for the third time, I have lost my side (private) room. Having anticipated this I had suggested perhaps that I pack my stuff up in readiness - take cards off walls etc and remove any surplus stuff - but was advised against this on the grounds it might actually invite such an eviction. But it happened anyway because of 'an emergency' so somewhere, locked in the Sister's office, are copious carrier bags with all my belongings, which I feel rather guilty that someone had to sort and pack.

Still feeling demob happy, I wasn't really too bothered about the loss of the room. At this stage of my treatment I am reasonably healthy with a good immune system (red cells are down a bit hence the transfusions) and determined to make the best of the respite before the chemo starts again on Cycle no. 2 on Monday. My main concern was 'escaping' again and not letting the morning eat into the rest of the day. The compromise reached - thanks, Sister Naomi - was to split the two blood transfusions across Saturday and Sunday, which then meant I could get out at a reasonable time, around midday, both days.

Blood!
Sitting there receiving someone else's blood, I couldn't help wondering whose it was - and whether I might start adopting their characteristics. So long as they are not some kind of psychopathic weirdo, that's all...

I am, of course, grateful beyond words to whoever it was who gave up their valuable lunch time to give their armful of red stuff in exchange for a cup of sweet tea and a couple of ginger nuts. But guilty I am not. I gave over 50 pints of my own over the years and would have given a whole load more if I hadn't developed hypertension in my 50s. Many pints over many years and hopefully they all went to good homes too.

The Great Escape Act 2
So once I had been given the red stuff, received my meds for the evening again and bid my find farewells to my warders, I was off again. Poor old Sally, she has doubled the mileage on her car recently. Again, as we approached Cheriton from the A272, I felt a great wash of relief pass over me and we got back in plenty of time to get snuggled down for the afternoon and light the fire etc before dear Zoe turned up (in her brilliant new Golf) for the afternoon. A foul day so no guilt at adopting the reclining sofa position again. Tom, who had been at a brewery tour at Ringwood Brewery, arrived around tea time sporting takeaway beer and homemade cupcakes - and my belated birthday presents of smart new Crew legging sweats and warm PJ bottoms.

A sofa afternoon. So far, so good.

No pics, I fear, but we even made it to the Flower Pots at 6pm for another dose of normality and a ginger beer shandy. Jo Bartlett is joining Sian in 'Dry November' and putting the proceeds into a pot for the Lymphoma Association fundraiser - thanks, Jo - and Paul T is now sporting eight days of (grey) moustache for which he has already raised £100 to go to the same place. Good on you, both.

The usual 'Friday night' crew appeared, probably because it was Sue Masser's birthday on Sunday. There was the Masser family, the Kingsfords (Nick has joined Twitter but has only ONE follower! Please follow him if you're on Twitter - @Nick_Kingsford), The Bishop family and John Hankin, whose lovely wife Jane is suffering from bone cancer. We made our way home about 7pm. Zoe dropped us back (mightily impressed by her car - so quiet!) and she went on to her house. Tom stayed with us and overnight; another great meal - chicken breast wrapped in bacon with cheese, wedges, and sweet corn. So tasty. Add two hours of Lewis and another lovely, simple evening at home appreciating the simple pleasures that Home offers.

Sunday morning - recapture and re-escape!
A much more leisurely and civilised start, even allowing time for some bacon and scramble egg. More organised this morning and blood/antibiotic done, I was out of there by 12.15pm. Lots of facebook jokes about tunnels and "did they find the glider, made from old lollipop sticks, under the bed?". Sally and Tom had spent the (sunny) morning at her parents, scraping moss from a roof and various other jobs. Of course it started raining once I arrived; thank goodness for that, I'm not sure I'm up to cleaning roofs and gutters right now.

Sunday lunch at Wellow means at least two things - excessive warmth from roaring wood burner and excessive but always delicious food. Today was no exception: roast beef, Yorkshire pud, roast potatoes and and all the usual vegetables. Really, very tasty and hardly time to squeeze in tea and crumpets at 5pm before recapture at 6pm to give Pam and Ted time to recover (they do get tired easily and so they should at 86 and 87) and Sally the chance to get home in reasonable time. Tom had departed at 4-ish back to London - the drive took him nearly three hours, always a really slow journey back on a Sunday evening poor chap. But he did have time to give my hair a grade 2 - meaning that I

Tom finds new skills as a hairdresser.

already look pretty bald so as I lose the rest of it it won't notice so much.

Back in clink
So it's back to hospital and attempting to sort all my bags of stuff from my old side room. I have decanted three bags of DVDs, books and various stuff I really don't need and haven't got room for and hopefully they can go back home with someone before Sally comes in on Wednesday. I am on the same open ward as before - but the middle bed of three. There is no daylight and no room, just a bed, a locker and a seat. A reasonable night's sleep (although I do still seem to be getting up for a lot of wees). Made good use of blindfold and ear plugs.

R-IVAC
The next set of chemo has just been explained to me by Marie-Christine, the Registrar who amongst other things administers my lumbar injections. She is Belgian and very sweet, explains things thoroughly and is very patient with me and my lack of medical knowledge.

I won't go into detail but the bottom line is that the chemo involves three main chemo drugs plus a couple of others which protect certain areas like the bladder, from infection. The side effects will be much the same as the first lot, with possible conjunctivitis and rash thrown in.

What is different is that they might chuck me out next weekend (day 6/7), for the rest of the 21 day cycle. In other words providing I am not really poorly I might just as well be convalescing at home in comfort rather than being in a hospital surrounded by potential infectious hazards. So fingers crossed.

Sounds good to me!

So long, Dad, see you next time you escape! R.

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.