Chapter 21 - That end of term feeling!

It's Christmas!!!

The last post ended on tenterhooks - will he/won't he spend Christmas at home? Well, a glance at the pics below would indicate the best result, the one that I was desperately working towards. A lot can happen in a short space of time and although I started the week with a temperature and on a different lot of antibiotics aimed at sorting whatever infection was responsible, I ended the week on top form. So all in all a good week, and a good result.

Interesting neighbours
Monday and Tuesday nights were rather disturbed, due to my fellow inmates on the ward. Not being in a sideroom is ok but if you get stuck with other ill blokes in one room you are at the mercy of whether they are (a) infected with Norovirus (b) incapacitated/noisy (c) interesting. At the beginning of the week we had all three, and the latter was an especially sweet 97 year old I shall call Fred who obviously was not himself following chemo and was being kept in for his own good until well enough to go to his daughter's. At one point I found him sitting on the edge of my bed (whilst I was sitting on the other edge, so we looked like a couple of bookends); he was reading my paper. I thought he was being friendly, until I realised he thought he was sitting on his own bed; no wonder he was giving me odd looks. He clearly didn't like being in hospital (does anyone?) and tried to make an escape - the first attempt being at 4am. The night staff were very patient with him - he was ranting and raving at them to let him discharge himself and using some fairy ripe language for such a sweet old chap - but eventually he settled down. In the morning, I assumed that he had forgotten about his night excursion but not a bit of it; several more attempts to get dressed and walk out of the door were made before he resigned himself to being kept in a while longer. Poor man, his daughter assured me later that he's normally as 'sharp as a razor'.

Up the pub with an 'alf in me 'and! Excellent.

Best news ever!
Tuesday 23rd December and the Prof's rounds, so with it the decision on where I would spend Christmas. It couldn't come around quickly enough but eventually it did, along with a settling down of my 'infection' and a good, sharp rise in my blood count. The timing couldn't have been better and the result was the best I had hoped for - not just to be allowed out for Christmas day and Boxing Day but a full four day 'holiday' from Wednesday first thing 'til Sunday evening. Hoorah!

Of course, the perennial problem of getting my discharge letter and take-home meds sorted in good time was uppermost in my mind but some pestering of the junior doc and several nurses meant I was ready to go at 9.15am on Wednesday. I'd even ordered a cooked breakfast in celebration, though it only arrived just in time to eat it before Tom appeared to help me down to the car with (too many) bags and stuff. I promised myself to consolidate my baggage before readmission.

Christmas
In retrospect, I really don't know how we would have managed Christmas if I hadn't been allowed out; or more to the point how Sally and the family would have managed, since I wouldn't be able to move from hospital. It doesn't bear thinking about how logistically difficult and upsetting it would have been but thankfully the problem didn't occur so no point in dwelling on it.

Me, Lizzie, Sally n a triple selfie on Canada Common

As I was picked up nice and early we nipped home to Cheriton to get baggage, presents and stuff sorted and to pop up to the pub for an hour to catch up with friends. But we spent most of my 'holiday' at Sally's parents at West Wellow, as is usual at Christmas. Lizzie drove up from Devon, Zoe popped over for tea on Christmas Eve and with other relations we were a fairly modest six for Christmas lunch, the 'big' 12-seater job being reserved for Saturday when other members of the family were available. We had the traditional Christmas stockings, a leisurely walk in the sunshine on the common, a huge Christmas lunch, closely followed by tea - then supper.

Trousers now 2" too big. Thanks goodness for Santa.

One thing Sally's mother will not let you do as a guest there is starve.

Boxing Day (Friday) passed in similar manner although the weather turned really nasty - wet, cold, windy and with the exception of first thing when the white frost was still on the ground and Tom (who had joined us Christmas Day afternoon) and I walked Rosie across the fields.

Board games and newspaper/book reading and general chatter was order of the day, very much as usual. We have spent well over 30 such Christmases with my in-laws (my parents being long gone) and each year it's delightfully similar. There was a period when it changed for a while when the kids were small, but they too have now joined the league of lazy adults!

A bonus Christmas
Saturday saw a new influx of in-laws - Sally's brother's family, their children and other halves - for another walk on the common in the sun with dogs followed by a huge cold meat and salad lunch which I have to say I tend to prefer to Christmas lunch itself. Lizzie left for Devon shortly after and Sally and I also departed, wishing to enjoy my last day of freedom at Cheriton. I know - a bit selfish - but the thought of being allowed out and then not

Is it any wonder I put on 2kg in four days? Delicious.

enjoying the comfort of my own bed for one night - seemed just a little bit too much.

The Cradduck clan all together - wonderful!

We caught up with Downton Abbey, paid the odd bill and sorted some paperwork, investigated a leak in the airing cupboard and scratching noises that could be either mouse or rat. In other words, 'normal' things. All the kind of stuff that I can't wait to get back to in a few weeks time. Oh, did I mention a fabulously

Rosie having fun with her mates. She slept soundly that night.

peaceful sleep in my own bed?

Sunday was another lovely sunny day (we were so blessed with good weather) so rather than walk locally, we hopped in the car and headed off to Petersfield for a stroll around the Heath boating lake and a hot chocolate. At about a mile long, it is about right for my rather depleted fitness level. Santa brought me an adjustable walking stick for Christmas and I don't mind admitting it, it has come in useful; I look forward to getting properly fit again once the regime has finished and - I hope and pray - I am 'cured'.

A home visit wouldn't be complete with a visit to a Lidl to stock up with wine and bits and pieces, then it was home for the last few hours and watching ET on the box (it's 34 years since it came out and still entertains today). Then, sadly, it was time to pack up and head back to hospital.

What's ahead?
Back on ward D3 (thank goodness I wasn't readmitted to some other ward and have to fill put another 16pp form) and immediately it's back into the routine: light, noise, disturbed nights etc. I am hoping and praying for a relatively easy passage with this final chemo regime, the one that last time gave me such joys as hallucinations, sickness, Norovirus and chronic nosebleeds.

Our lovely kids - Zoe, Tom and Lizzie. Bless 'em.

I am also awaiting a call from ENT to follow up from last week's audiogram and to tell me what they intend to do to restore my hearing. It's been six weeks or more and I have to say they are not too impressive in the way they work. The longer it goes on, I can't help feeling that the longer it will take to sort.

So here we go on the last cycle. Wish me luck!

Chapter 20 - Your Christmas edition with pull-out TV guide

Sorry, I was lying about the pull-out. It's just a marketing technique to grab your attention.

Well, nobody said it was going to be easy
Reviewing the last chapter, it was a case of 'so far, so good' and inevitably the last part of the chemo regime - actually nothing directly to do with the chemo itself but more the state it leaves your body in - takes longer and is more complex/risky than you might think.

The chemo has the effect not only of destroying your platelets (for clotting the blood), red and white blood cells (the latter to fight infection), but finding other ways of infecting you; for instance through the gut, wherein lie millions of nasty bugs all waiting to attack any imperfection. So the indirect side effects add a list of ailments like gout, abdominal cramps, nosebleeds, ear problems, oral thrush, mouth ulcers and haemorrhoids (don't laugh; apparently there are two types of people in this world, those with piles and those who have yet to get them).

So my week has been difficult. Fighting fatigue, a direct result of the chemo is one thing, but add in all the other stuff as well and it really takes it out of you. You simply feel as though you are being attacked on all sides at once. Then, just as you think you are turning the corner - platelets are in double figures, blood count on the up and you're snuggling down in your NHS bed for a good night's sleep, routine observations pick up a temperature spike - anything above 37.5C is enough to set off a series of procedures, antibiotics, huge bags of fluids, midnight visits to X-ray, doctors with cold stethoscopes and yet another sleepless night.

New challenges
Each day presents a new challenge it seems - this week I nursed a chronic nosebleed from lunchtime until early evening (anything but have my nose with packed tampons again); my intrathecal procedure was cancelled because with a very low blood count it was too dangerous; my temperature twice more spiked late in the day raising nightmares of intensive care units. Three different antibiotics and hopefully the third one will keep the threatening infection at bay. Today the ward - as is the whole hospital - on lockdown because of an outbreak of Norovirus - seven wards are closed, visitors deterred, A&E at breaking point. If they don't get me from within my gut, the little sods are out there determined to get me some other way.

Sally adding up the Cheriton School proceeds to the fundraiser

Going on at home
On a much, much lighter note it is Christmas, the season of goodwill. And I have been bowled over by what's been happening on my behalf - or rather not mine but efforts to raise further money for the Lymphoma Association fundraiser. I received an email from Cheriton Primary School's headteacher yesterday, along with some very cute pictures, saying that they not only raised well over £100 at their Carol concert on Monday but nearly £200 more for allowing the children to wear a Christmas-themed costume, jumper or whatever. Impressive from a school with only 95 kids! Thank you, guys!

Class 4 from Cheriton School with a very special message - jut for me! Bless 'em.

I have already made mention of the local efforts going on at The Flower Pots Inn: Paul McTaggart grew a Movember (a valiant effort from Billy NoHair as he calls himself), Paul Tickner has grown a handsome (grey) rat under his nose and David Robinson has opted for a Decembeard which he reliably informs me has raised over £350!!

Sian and Jo from the pub both gave up booze for November and put a couple of quid a day into a pot instead; The Cheriton Singers (with whom I sing when I can hear in both ears) did their annual pilgrimage to the pub last night and even sang 'Once in Royal David's City' which Paul McT filmed, titled 'A Song for David' and posted on my facebook timeline this morning; the proceeds from the raffle also went into the pot. I believe the intention is to leave the various pots until 31st December and then put the whole lot in at once (we could have a sweepstake to see if we can guess the amount they have raised, yes?).

The Cheriton Singers serenading me from afar, bless 'em. Apparently a good night!

Oh, and go on. One last plug whilst I'm chatting about the fundraiser. It's a great cause and worthy of anyone's fiver. Click here to check it out and donate.

To be here or not to be here?
Now that is the big question. Come Christmas Day will I be helping the nurses jolly along the poor people who are stuck in hospital? Or will I be in the bosom of my family enjoy a 'normal' Christmas day? That's anyone's guess, but I know which one I'm hoping will happen.

"Happy Christmas one and all" as Tiny Tim would say!

I'm assured it wasn't a fix - well won Sally, fair and square!

Chapter 19 - So Far So Good

Am I the only one who sees this as funny?

I hate to tempt fate, and I am taking every day as it comes but looking back to the equivalent days of Chemo #1 back in October, I was not starting from the same playing field as this time. By now I had a temperature, a blood clot, a very swollen arm, was on antibiotics, was quite sick and feeling decidedly unwell. To date - and I am touching wood and crossing fingers whilst I write (excuse the typos) - I seem to have got away largely unscathed. But there's time yet, as I have only just gained neutropenic status (I have inserted a link here because several people have asked what nuetrapenic means) which means I am extremely vulnerable to infection for the next few days until the chemo is out of the system and my blood cells, especially neutrophils (white cells responsible for fighting infection) and platelets are on the rise again.

Time to Think
So for the past week, in between chemo treatments, I have been feeling relatively 'normal'. I know that because I have felt the onset of tedium creeping on and without the distractions of physical problems I have had time to think, listen and absorb what has been going on around me on this open ward. I have to say that I must consider myself extremely lucky inasmuch as my prognosis is good (with the caveat ringing in my ears "if you can survive the treatment you can survive the cancer").

Horace and friend in full flow this week.

The turnover of patients on this ward is very high and often transient; I see people I saw weeks ago, coming in for another planned batch of chemo or radiotherapy; others who are on their way home for palliative care, having exhausted all other avenues (of these some hoping for the best, others simply out of it on morphine and other stuff); others who appear to be completely healthy but obviously aren't. Some arrive for a day, others a few days, others weeks (although like me they probably spend some time in a sideroom). All of them have to wait forever for their take home medications and discharge papers if lucky enough to be released into the world.

The thinking is largely positive; not a case of if I get well again, but how quickly. At other times, as someone described it to me, it is difficult not to think about a day in the future when that 'icy hold might touch your shoulder'. This is not being negative, it is being human; realistic rather than pessimistic.

Even my meds are festive - thanks Photoshop and Hazel!

Another World
Being in hospital is like being in another world; a world regimented by routine, procedures, frustration and bureaucracy, missed communication mixed with the most excellent of clinical care. Nothing/everything is easy, and things can happen annoyingly slowly - even the simplest of things. Everything is done to  the clock unless the staff happen to be busy in which case time will slip.

For the most part you are treated as a real human being; at times, by a few (often temporary or agency staff) you become a number (eg 'the bloke in Bay 1, Bed 3') and a series of squiggles in your medical records. Ask for access to those records, or a status of your state of health in a particular area, and sometimes it's like you were asking to see state secrets. Very much a need to know basis. I constantly battle with ensuring that the staff know that I am a human being, with a life outside of here that I came from and will go back to. If I didn't I might easily become as institutionalised as some of the other inmates here. Which probably explains my obsession with getting home for the odd day or so now and then. This pensiveness has on occasion been interpreted as my 'morale being low' and the appearance of a sudden prescription for anti-depressives. No! It is just the human brain reacting to an alien environment.

It all comes back for the need to have an identity; ask a retired solicitor what he 'does' and he will more than likely reply "I'm a retired solicitor", not just "I'm retired". He naturally wishes to retain his 'badge/label and purpose in life. And it's the same in hospital: however ill you might be, you are someone, not just a patient.

Oh, it's beginning to look a lot like Christmas
And it is, by golly. Nurses singing carols and wearing reindeer antlers and Father Christmas hats, a flashing Christmas tree, tinsel above the doorways and even the most irreverent but innocent decoration of a a pair of red baubles hung above the entrance to the male ward, like the parade of heads at Traitor's Gate at the Tower in Henry Tudor's time. Funnily enough, only Sally and I saw the funny side to this - for which we naturally were accused of having smutty minds.

Apparently the nurses go to a lot of trouble to make Christmas Day as bearable and enjoyable as possible on the ward for those can't get home. This must be terribly difficult as I guess no-one, patients or staff, would prefer to be here than at home with their loved ones. I know where I would rather be and that is, hopefully exactly where I will be. My neutrophils may be on the way down but my optimism is most certainly going in the other direction.

The roller coaster continues

It could be the chemo, it could be lack of blood cells, platelets or whatever but as stated above, my emotions can swing high and low quite quickly and dramatically. One minute you're going along a straight bit then all of a sudden you drop off the edge. This happened to me last evening when, surrounded my hacking coughs, moaning and zombies, plus the prospect of not seeing anyone - especially Sally - for a few days whilst I 'recover' I just came over rather tearful. I have to say that, quick observation and thinking by the nurses, plus the availability of a spare sideroom, meant that I was whisked away from the open ward and put back in the privacy of my own room once more. My 11th bed move and seventh sideroom in seven weeks, and probably one of the most welcome. A small thing but worth its weight in anti-depressants.

Not sure about the fan? What's that for?

Well connected

Following my Yellow Peril chemo I am now connected to Horace for two/three days whilst they flush it all out again - meaning the inevitable weight gain (5.5kgs of fluids in 24 hours!), many trips to the loo, having to remember that I am hooked up whenever/whatever I do, and the constant whirr/clatter of the pump. In addition in goes the three hourly antidote and sleep becomes rather haphazard. But so far, so good - says he touching wood and crossing those fingers and toes.

Chapter 18 - Clean Air

I've said it before - there is nothing quite like your family and own home comforts to recharge the batteries and to make you feel like a human being again. Especially when your enthusiasm for being stoic, positive and fighting the good fight has started to wane.

So come Saturday I was more than ready to pack up my carrier bag of dirty laundry, chase up my last 'push' chemo and head downstairs to be picked up by Sally for the half hour journey home.

Clean Air
Saturday was a brilliant day - in more ways than one. The sun shone, the wind was hardly there at all and for the first time in weeks my lungs were full of clean, fresh air. My ear, too, started popping madly as if to say "this is more like it!". After a big bowl of homemade soup and crusty bread, we ventured out for a leisurely walk round the village and across to the recreation ground where we sat with our backs to the tennis pavilion and our faces to the sun for a good half hour, soaking up the warm winter sun. We bumped into assorted friends and neighbours en route and caught up with the news and gossip.

A Healthy Appetite
If I could eat like I ate at home for those 30 hours, I would put some weight back on in no time (am now just over 70kgs, or just over 11st, the lightest I have been for 35 years). I'm not sure what they do to hospital food - apart from serving it lukewarm - to make it so unappealing, and this despite a visit from the Hospital Catering Manager to talk about extending my choice of foods as I'm in there so long. It seems I can now stuff myself on sausage rolls and pasties, cottage pie and other delights, as well as ordering the occasional cooked breakfast. At least they are trying to make the food more appealing - have had three visits from a delightful dietician who is determined to make the food repertoire more inviting.

The steroids they gave me in the first few weeks lay waste to all my 'big' muscles - arms, legs etc are like matchsticks. I am going to have to do some serious, but planned, physio at the gym when I go home.

Who is that bald old git?

Hair Loss
My hair has thinned out dramatically but, surprisingly I have still have a soft (white) down and, much to Sally's annoyance, my reasonably bushy eyebrows. I guess there is still time for the rest to fall out or disappear completely - something I had prepared myself for - but I know it's only temporary. What I had forgotten is that my razor is redundant - I haven't had to shave for four weeks now.

I know hair loss is a big deal for some people, especially some ladies who suffer all sorts of further uncomfortable indignities hanging onto what they have and/or covering up with wigs and bandanas. Luckily for most blokes it's not such an issue, though it is a bit frightening looking in the mirror and seeing some wrinkled old balding prune staring back with scraggy neck, staring eyes and a look akin to a turtle.

Enjoy the Moment
So back home for a 30 hour visit, I ate well, slept well, and felt well. A couple of walks, having tea and cakes with good neighbours Sian and David, an unexpected visit from son Tom, a scramble about in the loft to get the Christmas decorations down and some lights up (makes the place look cheerier), doing 'normal' things like paying a few bills and sorting a few bits of paperwork, a proper Sunday lunch and plenty of cuddles with Sally and dotty dog Rosie in front of a roaring log fire. Just don't get me started about going back to hospital after an exeat weekend.

Putting up some Xmas decs with Sally and Tom

They kept my room. But not for long...
Yep, when I got back on Sunday night, much to my surprise I still had my sideroom (this luxury was to last until Tuesday incidentally when the pressure on beds necessitated my ninth or tenth bed change, back onto the open ward on D3). Actually it helped me to adjust back to hospital after my short break and I appreciate that whilst I am not neutropenic there is really no reason why I should have my own private room; however, like any other normal person my preference would be for a bit of privacy to spread, enjoy private phone calls, sleep without the crash and bang, moaning and groaning and bright lights.

Chapter 17 - London Bus Syndrome

I have now started on Regime #3 (of 4) of my chemotherapy - which is basically a repeat performance of the first one started on 18th October. From memory, and looking back at my notes and blog (Chapter Six - Ups and Downs), I should really know what to expect. The first part is relatively trouble free, followed by the Yellow Peril later this week which involves lots of Horace-dependent chemo-in over 24 hours and then a 48 hour flushing-out period during/after which my immune system will be as effective as a chocolate fireguard.

Blood cells - which disappear just when you need 'em.

The same - or different?
Time will tell. One thing I have learnt is not to under-estimate the side effects and the neutropenic stage of the chemo which can be more disturbing by far than the actual chemo itself. What is apparent is that each person reacts differently so there is no formula for treating these side effects because they may not happen, or new ones might appear. But with the benefit of hindsight it should, in theory, be possible to head off some of them second time around; for instance, prompt infusion of blood and platelets rather than waiting for non-stop nosebleeds and zero cell count. One to discuss with the docs I guess.

A long week
My week+ back on D3 was a mixed bag; officially still infectious I was treated with the yellow apron/white glove approach. Luckily my Norovirus didn't make me vomit from start to finish (and nobody is quite sure when it started and from where I got it, nor when it officially ended - which is officially 48 hours after last signs of symptoms').

I added gout this week to my long list of ailments whilst in here. Not a bad attack - I remember having an extremely painful attack of it a few years back when it was so painful I couldn't put a sock on or even touch the red hot big toe with a bed sheet. But they jumped on it (metaphorically speaking) pretty quickly and it seems to have disappeared.

Back in my sideroom on D3, in familiar territory, is good. A little quiet (not helped by my deaf ear) but it has helped with my ability to get a good night's sleep; one night a rather enthusiastic agency nurse woke me up at 2am to take blood pressure/temp etc but painfully slowly and with the b****y light full on so wrecking any chance of a quick return to slumber. But for the most part, the night staff tend to leave me alone as far as possible.

London Bus Syndrome
A source of frustration has been the ENT department's reluctance to attend to my ear. I have been receiving 'softening up' drops for a week but only after much pestering (more of this word later) did I get an actual appointment. As far as I was aware it was a simple case of syringing out and I would be back to full hearing...

I have noticed that Southampton General suffers from London Bus Syndrome; you wait for hours then they all arrive at once. You can be left alone to your own devices for hours on end. Then by some kind of Sod's Law if you have some kind of unforeseen procedure, often involving being wheeled to another art of the hospital for an X-ray, scan, intrathecal or whatever, you can bet you bottom dollar that lunch or a visitor will arrive just as you are wheeled out of the room.

In the case of last Wednesday, someone fixed my long-awaited ENT appointment on two floors up for 1.30pm, followed an hour later by an intrathecal (lumbar puncture chemo) three floors below. Optimistic? Somewhat - because the two were effectively one after the other and because the latter procedure meant I had to lie flat on my back for an hour afterwards, I was wheeled in my bed and left in a corridor outside ENT at 1.25pm. My 1.30pm appointment, after (more) pestering and anxious wait, being ignored by all and sundry, turned out to be at the end of a 'more urgent' queue, an hour and a quarter later. My ear was duly syringed; but alas no sudden return of hearing. Instead I was told have an infection in that ear (can't be helped by a two week wait to be seen), to take some drops which, as they work will get rid of the infection and my hearing 'will return'. They want me back for 'review' and more syringing five days later.

So by this time I was well late for my intrathecal and nobody knew whether to send me back to my ward or to the intrathecal ward. They opted for the latter, where I was told I was an hour early, was taken back to D3 and twenty minutes later enthusiastic porters arrived to wheel me back yet again.

Another long wait for the doc, then the news that I could not have the intrathecal after all because I was inadvertently given an anticoagulant the previous night, so too dangerous. Bordering on farce, I was (eventually) wheeled back up to D3. A completely wasted afternoon and not one to improve my 'morale' (officially declared low) or my faith in the internal comms here.

The Intrathecal from Hell
I had the intrathecal the next day; the previous three or four I have had have been relatively painless. A needle to put in the local anaesthetic, a longer needle inserted to rummage around in my spinal column, draw off a small amount of spinal fluid and replace it with chemo. The occasional coming together of the needle with a nerve, causing an electric shock to send a shock down a leg, some discomfort but on the whole not the worst thing in the world - until today's procedure.

By luck, and a degree of luck or clairvoyancy, I was given some gas and air this time. A 45 minute procedure went on for a miserable two hours and twenty minutes and was very nearly abandoned. They had trouble locating the right spot with the needle and once in could not extract any fluid. Eventually, after I had drained a gas bottle and was feeling highly emotional and sore, they succeeded, thank goodness, and an extra large patch applied to my sore, pin-cushion, back. And five days later I have another one of these?

Feeling Low
The next couple of days involved nothing much - no procedures except for a fifteen minute 'push' of chemo. Side effect or not, I was starting to feel very low in myself for no apparent reason. So when, on Friday, the Prof declared that I could go home for a short weekend, it was just in time to prevent me going bonkers. The news sustained me for the 24 hours required to wait until released on the Saturday lunchtime for  30-hour respite in the comfort of my own home with my darling wife and dotty dog.

Home sweet home.

Chapter 16 - 'Stille Nacht' - and days too

Incredible though it seems, it's been a whole week since my last post. Although I have felt up to writing most of the time to be honest there hasn't been a lot to say. But as I now enter Phase 3 of the Big Plan, it seems to me I ought to catch up while I can and before the side effects of yet more Chemo take hold.

House arrest or Leper's Colony?
Either way, the last week has felt like I was an outcast, not quite locked-me-up-and-threw-away-the-key outcast but when people approach you (even your wife) sporting yellow aprons and white gloves and the catering staff take your food order from the safety of the doorway, you know it's not just because you haven't had a good wash.

So I whiled away the rest of the week on C4 - in a sideroom, granted, trying to build my strength up and get over the Norovirus, septicemia and other ailments left over from Chemo Phase 2 in time to tackle the next lot. I had, rather naively, looked at the chart and thought 'maybe I'll get a good few days at home at the end of this one'. It wasn't to be, sadly, and I have rather resigned myself to exeat weekends and days off here and there are going to be few and far between.

Stille Nacht (Silent Night)
...and rather quite days too. My ear continues to be my biggest problem. It started with a ringing in the left ear a couple of weeks ago, and that uncomfortable 'bubble' feeling when you've been swimming and can't equalise the pressure. This has now built up to total deafness in that ear, accompanied by pressure which varies from quiet discomfort to requiring painkillers. ENT confirmed that it needed sorting, when they were busy stuffing tampons up my nose last week, and suspected a slight ear infection too, so prescribed drops for that as well as drops to soften the wax - prior to being syringed. I place the latter phrase in italics because this has become the main obsession in my life since.

Every day I plead with anyone in sight, from the person delivering my meals, to the doctors and nursing staff, to get ENT to sort it, please, please, please...

Eventually, in the nick of time before the whole ENT dept shut for the weekend. I was allocated a slot at 6.30pm on Friday. Presumably the last appointment so they could sluice the room down afterwards, just in case. However, a quick courtesy call from my ward sister to ENT to check that they knew I was infectious and was that still ok, put paid to that; not because they said no, but because they said they would check and call back. Yep, you guessed it - no call back. So there was I, back in quiet limbo with the whole weekend to look forward to and an ear that was now starting to cause other problems like dizziness - the kind you only usually experience after eight pints of HSB but thankfully shortlived.

One of my docs prescribed an anti-depressant because she declared my 'morale' as low. Like a good chap I took it. Coincidence or not I immediately started feeling sick and forced meals down. I unprescribed myself after a couple of days and the nausea has gone.

A positive move
I had two surprise visits during the week, both from nurses from my old ward upstairs, D3, declaring they had missed me and hadn't a clue where I had been sent when I came back in last week! It also seems, as suspected, that they would much prefer to have me back on D3 to start Chemo #3 next week as C4 only has two chemo nurses and neither of them are familiar with my regime. And they're busy and not necessarily around. So Sunday night saw me packing my stuff up yet again and being transported upstairs where, due to my 'infectious' label I am luckily back in a sideroom - my fourth on this ward. The chances of me staying here are slim, I know, but I'm making the most of the luxury. It's actually good to be back in familiar, friendly surroundings.

Prof Peter Johnson - head man

The Prof returns
I'm not sure whether Dr Davies, my normal head honcho, is on holiday, but twice now the docs rounds have been headed up by the big man himself, Prof Peter Johnson, who is charm personified. He quietly oozes authority (a whispered word from him gets things done that might require you or I to start bellowing). This morning, which is effectively Day 1 of Round 3, he managed to find in minutes an otoscope to look in my ears, which would have taken anyone else a month of Sundays. He confirmed that my right ear is fine and the left, whilst infection-free, 'needs gentle syringing' now the wax has been softened. Bless him, how could he know I am on the cusp of issuing a formal complaint against the ENT department for negligence? Let's hope his quiet authority extends to ENT. The back up plan is that Marie-Christine, a very caring and pleasant Belgian registrar, has kindly offered to do it herself if all else fails - today!

An otoscope - in short supply it would seem

Skype
Love it or hate it when it works, it's great - and has been a real boon in the past week staying in touch, especially with Sally, who nearly always seems to have Rosie perching somewhere in the background, ears twitching to a familiar voice. Trouble is when Skype suddenly locks you out for no reason it's the devil's own job getting back in. Out of my three devices - laptop, iPad and iPhone, only the phone seems to let me in and I am reluctant to start messing with passwords etc in case it locks me out of that one too. I suppose I could just start a new account but then no-one will know it. I'm sure I'll find a way round it but it is quite a lifeline, as not everyone has FaceTime.

Rosie gets in on the action and recognises a familiar voice

Keeping in touch
As well as skype there is facebook, fb messaging, twitter (@David_Cradduck) email, text and of course, this blog. Trying to keep up with well meaning enquiries from people who either are not on facebook or haven't read the blog can be a bit of a challenge so apologies if I don't necessarily respond. Sometimes Chemo Brain doesn't allow such a complex activity, other times it is awkward timing; 'procedures' such as being connected to drips, having obs done, ear drops and dinner arriving all coincide; at that point someone tries to Skype me. Sod's Law.

The Fundraiser
I am just bowled over; the one, big positive this week has been the fundraiser for The Lymphoma Association. When I launched it, only about five weeks ago, I set a target of £5,000 thinking that despite it being a tad high we have plenty of time. Little did I dream we would hit halfway point within two weeks and - Sunday night (last night of November) we would burst past the target and beyond. A profound thank you to everyone who has donated, grown moustaches, gone without alcohol for a month or otherwise put themselves out for this good cause.

The Lymphoma Association are chuffed too and have issued a press release which (hopefully) will get into many of the local rags including the Hampshire Chronicle and The Echo. My friend at Winchester Today even gave over a whole page to it, bless him. So hopefully you will see something about it in the press this week - and importantly where the money is going. The funds have been earmarked for a special e-learning programme to make GPs aware of early signs of lymphomas - the key to success being in early diagnosis.

So on their behalf, thank you and if you want to check the latest out, check out the Virgin Giving page.

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.