Five Years On... (written pre-COVID19)

It's a very bizarre feeling, like time travel. I'm now 66, and have just travelled back in time to read my Ill Bloke's Blog, particularly the last chapter (Chapter 30) entitled 'One Year On (and counting)'. I have re-read that particular chapter so I don't repeat myself – a habit that those of a certain age are apt to do, within a few hours let alone a few years.

Water under the bridge

Oh yes, a lot of it, and such a deluge since I was given a second chance at this life. Unfortunately many of my contemporaries, friends and acquaintances have not been so lucky. In the past few years I have been to far too many funerals, many of them in some way connected to cancer. Great strides have been made in the last half decade but there is a long, long way to go before the world is rid of it. The trouble is, it's a bit like the 'common' cold: there are hundreds of different cancers and there is no one-size-fits-all cure or vaccine to deal with them.

Distant, but vivid memories.

There are times when hospital, intravenous injections, sickness, hair loss, appetite loss, weight loss, bags of blood, bags of platelets and boredom seem a long, long time ago as if they never happened at all. But most of the time the images and feelings are still there, gently nudging my memory on a daily basis to remind me of how lucky I am and how I shouldn't waste the time I have been given. Of course there are daily reminders too of impending old age. Take the last week: notice of bowel cancer screening (again? it only seems a few months ago but is in fact every two years. And never, ever ignore it, by the way, it could save your life for the sake a bit of embarrassment). I sent off for my free bus pass which I was actually entitled to 16 months ago. My state pension will go up £5 a week from April. I have had an estimate to repair my teeth (my dentist nicknamed them Miracles in Metal when I still had some), the sum of which which would have bought me a 2-bedroom house in the 80s. My cycling group is justifiably called The Old Spokes. Luckily I am its youngest member. Whenever I am cast for a stage or TV/film role (more of which later) it is invariably as a grandfather with dementia or an age-related problem.

With a few more 'Old Spokes' on a fortnightly ride.

So growing older has its demands too, but hopefully I will not live to see out my days in some warm box; I aim to keep as mentally and physically fit as I can – without going too mad – and like most people will say to my children "put me down if I ever get like that, please", knowing full well that come the time they and the medical fraternity will do their damnedest to keep me alive whatever the cost to them, me and whoever bears the brunt of my elderly care.

Growing Old Disgracefully

I am still, to be honest, a fairly conservative person who gave up clubbing as most of my friends were just starting. Sally and I are traditional old stick-in-the-muds, really and very much creatures of habit. We still avidly avoid going out on a Sunday evening, preferring instead to have a couple of G&Ts and watch Countryfile and a TV drama. A good walk, a good book, a caravan holiday, crumpets and a wood fire, a warm comfy bed, a cycle ride, a beer at the pub on a Saturday early doors: these are high up on my priority list.

Simple pleasures: caravanning in Norfolk 2019

Life has changed, for sure. I gave up 'working' three years ago when I realised that I no longer needed to. I still do the occasional design and print project for one or two Cradduck Design clients, and I keep in touch with Ian, my old business partner of 35 years and push a few bits his way as and when I can. Sally still works three days a week at the local school which gives me a few days to write blogs, articles, theatre reviews, even (also this week and a first for me) a short screenplay. It may only be one scene long but it's a start.

The old joke about "how did I ever fit work into my busy schedule?" seems to be ringing true for me. I am as busy as ever with my stage acting, at least locally, for Cheriton Players and West Meon Theatre. I feel guilty that I have not been in anything at Romsey or Maskers (Southampton) for ten years but one thing I no longer enjoy doing is driving very far in the dark; I prefer to fall out of my door and into rehearsal. I have been involved in some great stage productions since my last blog chapter, including the zany The 39 Steps at West Meon, the challenging part of John Cooper in A Month of Sundays (for which I was nominated as Best Actor in a Comic Drama) and a cameo appearance as Prince Philip in Diamonds Are For Trevor, a Bond spoof part-filmed over the summer of 2019 and presented as a stage/film amalgam in November at Cheriton.

The cast of 39 Steps at West Meon, January 2019

And then there is my new 'career' in film and TV. It sort of started a while ago but only took off recently. I was an extra in On Chesil Beach (the screen version of Ian McKewan's odd novel) in late 2016 and this led to me signing up with a few 'extra' (or Supporting Artist) agencies in the hope (or rather Sally's) that I might get onto the set of her favourite, Poldark. Funnily enough that is exactly what happened and I spent six days on the Bristol set of Poldark as an MP, party/lunch guest and other background characters in Series 4. A hugely enjoyable experience I then went on to do various TV and major film work (only as background) such as BBC's His Dark Materials, Rocketman, Last Christmas, Dolittle and Death on The Nile. All the while I had gradually been getting involved in short film and low budget film acting roles – mainly for student productions; university undergraduates, often in the final year and for their final major projects (FMPs). I've had to audition for most, I've learnt a huge amount already, have a showreel, a couple of professional profiles and was about to be taken on by a local agent. That will have to wait because...

As a train diver in On Chesil Beach 2016 – except you never see me.

And then came Coronavirus
You will have gathered that the above was started some while ago. In fact it's less than a month but I had put down the proverbial pen having been sidetracked by a few film acting roles – no less than four self-tape auditions sent in one week and the promise of more (paid and unpaid) film work in a month than I have seen for a while. Maybe some new headshots helped – that and creating an online web based platform to get myself known to casting directors. I have also acquired an agent but yet to sign on the dotted line as we cannot meet face to face for a while. Why?

Lights, one of a few university films I've been in. Great fun.

Suddenly the world has gone into meltdown. Only three weeks ago I was on my way to Dorset to do a little filming for BBC's Close Calls on Camera, a daytime reality drama/rescue series. This will be my third such role. Not BAFTA award winning stuff but good fun and I get paid. So there I was, having fun on The Dancing Ledge on the Isle of Purbeck and only vaguely aware that there was a medical storm brewing on the horizon that was to change our lives profoundly. Not just me and my immediate family, as was the case five years ago, but globally. At time of writing, the number of people worldwide who have died of this particularly nasty strain of Cornonavirus, known as COVID-19, has reached one million. Italy, Spain and the US have been worse affected but the UK hasn't got away with it at all.

Along with the rest of the world, we are effectively locked down, allowed out for essentials only (shopping for food, one exercise a day and so on). But there wouldn't be many places to go anyway – pubs, clubs and non-essential shops are all shut, businesses are going bust, the UK government has stepped in with promises of huge wads of cash to support employers, employees, self-employed and business owners but it's not happening fast enough to prevent disaster for many. They are also slow at ramping up testing for the virus, especially for the frontline NHS staff are dealing with a tsunami of victims. Universities are collaborating with authorities and industry (even F1 motorsport engineers) at amazing speed to provide technological and medical weapons with which to fight and defend from this unseen enemy. Antibody tests are urgently required to see if someone has had it or not. Not to mention a vaccine, of course. The Excel Centre in London has recently opened as a 4,000 bed emergency hospital, aptly name The Nightingale Hospital.  The worst is most definitely to come.

And the worst was to come.
Three weeks later and the death toll has risen in line with Italy's experience and that of Spain. The USA is reeling and Donald Trump is predictably blaming everyone else, including the World Health Organization, for not doing more earlier. Oh, and how he will open up the US again very soon (mind you at the beginning of April this was to happen by Easter). The three week lockdown in the UK has ben extended for another three and talk is now divided between getting the NHS and all frontline carers sufficient PPE, 'ramping up' testing from the present 18,000 a day to 100,000 a day by the end of the month (just under two weeks away), whether or not we should all wear face masks, what devastating effects all this is having on the global economy and when /how are we going to get out of this mess which seems largely dependant on the speed of development of that elusive antibody test  and a reliable vaccine.

Another couple of weeks on and we are now facing global economic meltdown but, thank goodness, a decline in fatalities. Now the problems are: Trump, the lack of PPE and testing, the revelation of care home death numbers and, rather importantly, how to get out of the lockdown and save the economy without causing another spike in numbers and starting the lockdown all over again. It's going to be a while yet before I can restart that new career. But at least Burkitts is (hopefully) a distant memory. And now my thoughts are with those lovely nurses at Southampton General who helped me get back my life five years ago and are currently risking theirs.

A big thank you to these lovely people at Southampton.

So my five year follow up chapter has been well and truly upstaged by this pandemic and rightly so. Perhaps this chapter ought to have been entitled An Ill World's Blog. Next time I decide to write a five year follow-up I may think again.

Finally, a rare gathering of the Cradduck clan in 2017 for Sally's big birthday. Huge thanks to them too. x

Chapter 30 – One Year On (and counting)

One Year On
I write this around twelve months from the day I went home from Southampton General Hospital, having spent the night – my last night – in relative luxury in a plush sideroom on the Teenage and Young Adult Ward.

Why can't all hospital beds be like this?

It's an odd feeling, really, writing another chapter after so long. It's almost as if the whole thing was just a dream and I've spent the year waking up from it. And I'm loathe to call this, as first planned, an Epilogue. I don't know what might be around the corner. This is not pessimism, just the plain truth as none of us know what lies in store and I would hate to tempt fate by saying this is my final blog chapter – just in case it isn't.

But apart from being pumped full of blood and platelets during the latter end of February/the beginning of March last year in order to bring my blood levels back up to a reasonably safe and sustainable level again, I am happy to say that my recovery has been almost complete. I say almost, as my hearing has not recovered (more of which later), my revised plumbing means I have to plan ahead a bit more, there are times when I am convinced that I have a huge tumour growing inside me again, and I always breathe a sigh of relief when I am given the thumbs up at my three-monthly check-ups, despite the fact that should the cancer return it would almost certainly happen quicker than the three month gap in between those check-ups.

Getting air in my lungs and hair on my head

I am a lucky chap: although there is, and never was, a good time to have cancer, the chances of survival are higher now than ever before. Treatments are more sophisticated and although chemo and radiotherapy are still the norm from what I understand about research into immunology it won't be very long before the job of tackling cancer won't be the unpleasant, dangerous and scatter-gun business it is at the moment. I know full well that had this happened to me as little as ten years ago my chances of survival would have been dire compared with today.

Reviewing the situation as Fagin

Looking back I know the whole experience – from my admittance to A&E at the end of September 2014 to finally going home in the middle of February 2015 – was gruelling and there were times, I now understand, when many people had written me off. If I am honest there were times when I had written myself off. What I also know now is that the chemo took its toll on my body: at my last check up at the beginning of January, for instance, I was a little surprised to hear that my platelets are still hovering below 150, the level at which most 'normal' people's count would be considered to be too low for comfort. I do bruise a bit more easily and I have occasional spontaneous nosebleeds. My real fear is that, should the dreaded disease return, the old body might not survive any more aggressive treatment, battered as it is from the first lot. So I live in the constant hope that I never have to put it to the test.

A new kind of normality
One of the MacMillan team at Southampton and a Lymphoma specialist, asked me back in March last year how I was getting on with my 'new kind of normality'; she was also the one who told me that 'if I survived the treatment I would survive the cancer'. She has the knack of summing things up very nicely and on the odd occasions when I have seen her since last February she never fails to floor me. For instance it was at Christmas that I popped in to say hello and she told me that it was safe to say that, having survived the first six months in all likelihood I was probably past the point of Burkitts returning any time soon (she had never seen a relapse after six months, the first two or three being the most likely). Now she tells me. Thank God she didn't drop that one on me this time last year.

Enjoying a spring BBQ with Tom

My new kind of normality means accepting that my hearing – or at least the way I hear (subtle difference) is never going to be the same again. Annoying rather than anything else, I constantly feel as though I have immersed my head in water and my left ear is still full of water, making hearing a bit muffled and, more importantly, I cannot equalise the pressure in that ear. Despite several (private) consultations, hearing and pressure tests, an MRI scan and having a gromit fitted, the problem is still there and unlikely to go away. I shall have to learn to live with it, I guess. It makes singing difficult as I can't seem to pitch properly, acting is a challenge as my voice sounds very different to how it used to (I'm not sure if I am shouting), and conversations in noisy pubs are nigh on impossible.

Fab fun in Peter Gordon's comedy Third Week in August

I understand from a friend that there is a recognised disorder known as 'chemo-deafness' and having researched this a little it may be that my deafness is not the result of the chemotherapy but possibly the strong diuretic pills, steroids or antibiotics I also had. Whatever it is, as I say, it's annoying but a small price to pay.

My only other legacy is, shall we say, an unreliability in the plumbing department. Not incontinence but I have to plan my movements (literally) and be careful about what I drink. Too much of our local brewery's real ale and I suffer. According to someone who has survived bowel cancer this is a common problem. I suppose it is inevitable that the removal of several inches of intestine and being pumped full of toxic chemicals could well have a long term effect on anyone's digestion. Again, a small price to pay.

Otherwise, my health generally is very good and my fitness has returned. I can walk for miles as before and I have taken to cycling regularly again. I happily doze off in front of the TV but this probably has more to say about the state of some of our viewing than any chronic tiredness.

It's back – and curly!?

Another curious oddity – when my hair grew back it was incredibly curly for the first few months. This is not unusual either, apparently. I've heard tales of straight hair coming back curly, curly hair coming back straight or even reappearing a different colour.

All in all, I feel good – I sleep well, I eat well, my weight is stable at the same level as before I was ill and I am reasonably fit.

Work/life balance
In the middle of my hospitalisation I promised myself that if I got out of it alive, I would seriously consider an early(ish) retirement, or at least revisit my work/life balance in order to never put off those plans on the assumption that 'there's always tomorrow'. Had my illness occurred five years earlier this would have been much more difficult, as I was still running my own business, paying off a mortgage on a French property and had three children at university. So the overheads, as well as the stress levels, were much higher; whoever it was up there who decided on the timing of My Little Problem, thanks for that at least.

Walking the dog (or in this case, carrying the dog past cows)

My employers were nothing short of totally supportive – for keeping my job open on full pay for the five months in hospital; for such a generous donation to my fundraising for The Lymphoma Association for understanding and accepting my request to cut my hours on my return in the spring; then to allow me, from 1st January this year, to go freelance and carry out my work for them on a self-employed basis so I can pursue other projects.

'If I Were Not Upon The Stage'
If I had my time over again I would probably flip the coin and instead of going to art college to study graphic design I would take my chances as an impoverished actor. The 70s provided more opportunities for people to get into drama school, even if they weren't guaranteed a job at the end of it. For me, at a time when I had no commitments to speak of, it really was a toss up between art college or the stage. But I made my choice at the time and have enjoyed a fulfilling career in design and over the years played a huge variety of stage roles I would probably have never landed on the professional circuit.

A gong – at last!

I have had the pleasure of appearing in (getting on for) a hundred productions with three different theatre groups and played some amazing characters like Fagin in Oliver! (revisited last year for the local choir), Toad in Wind in the Willows, and in separate productions thirty years apart, both Tom Jones and Captain Fitzpatrick in Tom Jones. For some reason I am often cast as eccentric or weirdo characters and in the past twelve months, since finishing my treatment, have appeared as Pam Ayres (in drag), a German explosives expert, Herr Winklekopf in Lord Arthur Savile's Crime and as Neville (the Nerd) in Peter Gordon's hilarious Third Week in August for which I was honoured to receive the award of 'Best Actor in a Comedy' at the local Curtain Call Awards, sponsored and run by The Daily Echo. Having been nominated three times in the past, and not won, and unable to attend last year's black tie awards dinner in Southampton (I was still in clink), I was dead chuffed to attend – and win – this year and spend a happy evening with my fellow thespians at a very noisy ceremony, most of which I couldn't hear.

Jumping Mental Hurdles
Those beady eyed readers amongst you will remember that when I got the first inkling of my impending illness I was in a caravan on the Gower Peninsula, busy learning lines for one of the most challenging roles I have ever been cast in – that of An Ill Bloke in a retirement home. My character, John Cooper, is attempting to come to terms with the onset of old age whilst facing the prospect of increased fragility, incontinence and senility with humour and banter. Rather ironic, really, considering the outcome: the play was first postponed, then nearly went ahead without me and was finally shelved and the ticket money returned.

Playing an Ill Bloke in A Month of Sundays. A milestone.

So it was a bit of a mental hurdle for me when it was suggested to get the production of A Month of Sundays by Bob Larbey (of The Good Life and Ever Decreasing Circles fame) back onto the stage with the original cast and crew. Just over a week ago I was hobbling around the stage at Cheriton pretending to be as ill as I really was some 16 months ago and as many kilos lighter – but this time at least I didn't have the indignity of being bald. You might say it was an extreme form of method acting (or masochism perhaps) but I jumped the first mental hurdle of returning to the stage to start rehearsing this particularly tricky and challenging play in December, and having re-learnt all those lines, I was delighted that the play was a great success. Our audiences were with us all the way and laughed, nodded, squirmed and cried throughout; you could have heard a pin drop at some of the more poignant parts, only seconds after roaring with laughter. I am so pleased that we revisited this production and that I didn't tempt providence!

On the opening night there were five important people in the audience: four of them nurses from D3, the ward on which I spent nearly all of my time in Southampton General (no less than seven of them turned up to cheer me on as Neville last June!) and Steve Wishart, a fellow Burketts sufferer who was in D3 at the same time as me and who is also currently enjoying a second chance at life. It meant so much to know they were there supporting me.

A school reunion – sadly one of these guys didn't make it to Christmas.

There's a Lot of It About
Since September 2014, when I was first diagnosed with cancer, I know of no less than nine friends who have also been diagnosed with some form of the Big C. Two of them (both old school friends of the same age as me) have died in the last year. One is in remission and the others are all still undergoing treatment. Even though I have been there and done it, I find I cannot be of much help to them. I have been told that I have been 'an inspiration' to other cancer sufferers; I sincerely hope this is true but I am no medic and can only offer the same sympathy and good wishes as anyone else, except perhaps with the benefit to both of us that at least I know what they are going through.

But treatment is constantly improving and one day I really do hope that cancer will become a thing of the past. It is the word that strikes fear in the heart of all of us and with good reason.

Goodwood Revival 2016 – another milestone.

In the meantime, we have to adapt and learn; having cancer has for me been a life changing, but perversely an, uplifting experience. I wake up every day with a smile on my face in the knowledge that I have beaten it for another 24 hours.

To Blog or Not to Blog?
I have found writing a blog and posting the occasional facebook update to be both cathartic and, in retrospect, therapeutic. A problem shared and so on. Others I know have endeavoured to keep it very much to themselves and I respect that. If that's their way of dealing with it, I don't have a problem with it, everyone has to deal with it in their own way. I will keep this blog open, just in case of new revelations or updates. The thought of closing it down is rather sad – it has become an old friend and I know from the stats that people have read it, even if some have said that it has sometimes made difficult reading.

The Future
My three monthly check ups will, after April, become four monthly for another year and after that, assuming all is well, I will join a 'self-diagnosis' routine where I have blood tests which are monitored by my oncology team in Southampton and unless they (or I) have cause for concern, I will no longer need to attend outpatients appointments. I won't mind foregoing the long wait for these: rarely do they run on time, usually entailing an hour and a half wait for a 20 minute appointment. bUt I will miss my pilgrimages to visit the lovely staff on D3 although I suspect that in another year's time they will either have had enough of me popping in or the staff will no longer remember me!

I am now less than three years from being able to claim my state pension, being the age that still benefits from a retirement age of 65. I am enjoying my relaxed work regime – I still enjoy a challenge but my ambitions are now more realistic and achievable.

Whatever the remainder of my life has in store and for however long that might be, I do not intend to waste it. I've been given a second chance, but cannot reasonably demand a third.

Chapter 29 - So how are you?

A very good question and not one that I am prepared for because I honestly don't know. I know how I feel, but is that anything to go by? When I had a 'bucket load of tumour' inside me last September I didn't really feel that ill, I just knew that something wasn't right.

So, nearly a month after being 'released' from Southampton General as an inpatient, I really don't know what to say when people ask me the question "how are you?". All I can do is tell them - quite honestly - that I feel good and I'm "getting there", whatever that means.

They shouldn't have left the dry board markers lying around.

My last night in hospital was a truly bizarre one: I had just got myself settled down in D2, the new ward attached to D3 and had - providing I had a few platelets to my name - only one more night to stay in before being released on Saturday 14th Feb. So I was a little surprised when I was asked if I could do everyone 'a huge favour' and move wards again. But the biggest surprise was where they wanted me to move to: a sideroom on the Teenager and Young Adult Cancer Ward (apparently they asked me because I was the youngest in the bay...).

The Teenage & Young Adult ward; own TV, wifi, hifi etc.

Now well into my 62nd year I cannot honestly lay claim to being a teenager but, flattered of course, I agreed and the next thing I knew was I was in what appeared to be a five star hotel with its own TV (proper job with Freeview), wifi, hifi, X-Box, desk, sofa, built-in faux fire complete with video of burning logs, electronically controlled venetian blinds, mood LED lighting, ensuite bathroom, and decor more befitting a hotel than a hospital. There is a dayroom, with pool table, sofas and more entertainment. Being a recycled teenager I was reluctant to poke my head around the door of the dayroom in case I was arrested for being a dirty old man.

In fact, more of a hotel room than a hospital ward...

I understand that the ward was paid for by The Teenage Cancer Trust which is highly commendable and I don't begrudge them a penny; it's just a shame that the rest of the hospital doesn't match up to this VIP treatment. My platelets were exceptionally low (8) on Saturday morning, day of discharge, so a pool of platelets was ordered up for me prior to going home. Daughter Zoe came and fetched me, bless her, as Sally was away in Devon with our other daughter, Lizzie. Zoe and I watched the Six Nations Rugby (England thrashing Wales) while I had my platelets, then I (rather reluctantly) packed my bags and we left for home where my sister Steph was going to look after me for the night in case I had to be rushed back in for any reason. In fact I had to come back the next day for a blood test to see if my platelets had recovered or whether, if below 10, I would require more. Steph and Mike drove me to the hospital and - hey presto! - my count was a massive 25 so we went straight back home again; great news as I had arranged to meet with old friends John & Julia Bryant at home.

Zoe couldn't actually believe the 'fireplace'

The next week saw my platelets drop from 25 to 15 and then to 12, prompting fears of more infusions; but come the beginning of the next week, they had zoomed back up to the 20s by themselves. However my haemoglobin was dropping and at a lowly 75, required me to come back in for a couple of bags of red stuff; otherwise I had been feeling ok but I admit to getting a bit puffed out before the blood transfusion put colour back into my cheeks and enabled me to walk up hills again.

The platelet count continued to rise and once it was hitting the dizzy heights of 70-80 (at time of writing they are up to 133!), my last intrathecal was then scheduled for Thursday 5th March; not one I had been looking forward to but certainly wanted out of the way. Not for the first time, the procedure was definitely not straightforward. How does one put this diplomatically? If you know your patient has a lot of scar tissue  in that area and, on a few occasions, you have had a great deal of trouble hitting the right spot with your spinal needle do you not ask the doctor who has successfully performed this before to perform it again, rather than pumping your patient full of anaesthetic, gas/air and needle holes before finally giving up and bleeping that very doctor? I left hospital with a very sore back and still groggy from the gas and air - and slept, if a little uncomfortably, at least very soundly, that night, dead tired but happy that in the end the procedure was successful and I wouldn't have to come back for a rematch the next day.

...in fact, if it wasn't for the bed...

Which brings me back to my title question: "How are you?", one that I have been asked by many people who have been following my journey. Well, until I have my CT scan in 10 days, the results of which I will get a week later, I will not know for sure if I am 'in remission' or not. Even if I am, I still won't know if or when the Lymphoma might return - in a few weeks, months, or years; but hopefully I will have joined that lucky club who have beaten cancer for the time being and bought themselves many years of quality life. I am under no illusions about the future, but take each day as it comes and am grateful for the opportunity to do so. There are plenty of unfulfilled ambitions left on my bucket list and if this life-changing event has taught me anything, it is to be grateful for the second chance and to take advantage of that for as along as I am permitted. To quote one of the Lymphoma nurses recently: "It's a new kind of normality". Things will never be the same again but a sense of normality - insofar as I am starting to do 'normal' things again - has been re-introduced into my life.

This is the last official chapter in this, my first ever, blog; there are a few things left to do - have my PICC line removed, the CT scan, the follow-up; but I am leaving An Ill Bloke's Blog open for a final chapter - or epilogue - at some point in the future when I can either look back and say "thank God I survived that" or I have more news, good or bad, to impart. Meanwhile, remember that life is short, and without being glum about it, death comes to us all eventually. One just hopes that it will be later rather than sooner!

But no substitute or home comforts...

My final word goes to all those kind people who have looked after me over the past five months - the NHS medical staff who operated on me, nearly killed me off with chemo and then nursed me back to health again; the many donors who provided me with blood and platelets; my family, especially my long suffering wife Sally, for being there when they were needed, and my too-numerous-to-mention-but-you-know-who-you-are friends who willingly volunteered to be my 'army' and visited me or sent messages of encouragement through Facebook, Twitter, email and SMS. Thank goodness for social media. Oh, and Rosie the Golden Retriever.

I wish you well, and if anyone would like to make a last contribution to helping eradicate this awful illness, the Virgin Giving page for Lymphoma Association's GP learning programme remains open and active until 1st April http://uk.virginmoneygiving.com/team/anillblokesteam. Thank you.

Chapter 28 - Ailments, Hints and Tips

I thought, in between standard posts on my progress, it might be useful to recap on the common ailments one might encounter during treatment for Burkitt's (I'm sure a lot would apply to other Lymphomas, though I am no expert) and some useful hints and tips for dealing with being an Ill Bloke/Lady.

The ailments
In no particular order - alphabetical, chronological or otherwise - during my stay in hospital, I have suffered from:
Lymphoma (obviously)
Gout - in one toe
Diarrhoea & vomiting
Granuloma Annular - a red, harmless rash that spread across my face and upper body
Septicaemia
Deafness (partial, in one ear)
Ear infection
DVT (blood clot) in arm
Infection in arm
Alopecia (loss of hair)
Neutropenia (very low white blood cell/neutrophil count)
Hallucinations
Cognitive impairment
Chronic nosebleeds
(Mouth) thrush
Mouth ulcers
Haemorrhoids (piles)
Norovirus
Conjunctivitis
Common Cold

Many are directly as a result of chemotherapy and are know side effects like the loss of hair - often regarded as the 'signature' symptom of chemo and, indeed, cancer; cognitive impairment (often referred to as chemo-brain or chemo-fog) and mouth ulcers. Others, like gout, piles, rashes and - in particular for me - deafness, can be knock-on side effects of chemo. They don't happen to everyone and are not inevitable by any means. But chemo hits the body very hard - it is designed to in order to successfully attack and destroy cancer cells - and the effects of doing so, and destroying the body's immune system, can lead to all sorts of other problems.

Some can be anticipated and dealt with almost before they happen, for instance vomiting; chemo makes you sick and they give you anti-sickness pills as a matter of course as soon as you start. Likewise many infections can be headed off by the use of preventative antibiotics and because the whole system is tried and tested - unless you happen to be on a new, experimental drug for instance - many side effects and infectious problems can be dealt with even before they happen.

Take each day as it comes
As far as medical problems are concerned, many are inevitable and your medical team can talk you through what is happening to you, why and what they are doing to alleviate them. The best thing is to go with the flow; take each day as it comes as neither hospitals nor illnesses respond well to being rushed. Put plans on hold whilst you cope with this. There will be enough going on in your life without having to worry about what's going on at work with that important contract or how you are going to get the dog to the vet for a booster.

Hair loss is fairly inevitable, but it does grow back

Physical problems - hair loss
Hair loss is probably one of the obvious ones - much easier for an ill bloke to deal with than an ill woman. A good friend who lost her hair was very distressed about it and the cold head treatment to help prevent it was equally unpleasant. From my point of view, it was just one of those things that was going to happen so I had my hair cut very short to start with. To my wife's dismay I never did lose my eyebrows. Not having to shave for a while I regarded as a bonus. Hair grows back after treatment has finished.

Physical problems - food
Loss of taste, loss of appetite, mouth ulcers, feeling sick and hospital food: what a combination. Regarding loss of taste, it is short-lived for the few days when you are neutropenic; it's not nice but not a lot worse than losing your sense of flavour when you have a bad cold. I found that sweet things were less affected than savoury; so for a few days I lived on syrup sponge (or similar) and custard. Don't be tempted to try the tikka masala - all that happens is it hurts any mouth ulcers you might have, still tastes of cardboard but is red hot into the bargain. Sweet and sour chicken is better. Some days you may not feel like eating at all - this is quite understandable. Don't force it down, just over-compensate when you do feel like eating and don't worry about snacking/grazing. This is your perfect excuse to demolish the odd Snicker or Crunchie with a clear conscience. You must eat - being ill actually uses a lot of calories - and although you should avoid stuff like unpasteurised or processed dairy products, unwashed salad, under-cooked meat, shellfish, boiled/fried/poached eggs (the yolks are still basically uncooked) - don't worry about how many pounds you might put on, it's irrelevant. You'll lose more than you gain for sure. Make sure you use a mouth wash (that doesn't react with toothpaste) and rinse your mouth with saline washes frequently, especially when your mouth is sore. The medical staff can give you these.

I found sneaking in some simple foods not readily available in hospital made a huge difference - probably the biggest being brown sugar to have with porridge. White just doesn't do it for me. I also love beetroot with macaroni or cauliflower cheese and it's good for you too. Tomato ketchup isn't but it does make that 'all day breakfast' (which is available at Southampton General at any time except breakfast) go down a lot better.

Not a standard hospital breakfast - but it can be

Finally if you are in for a long haul, ask to see a dietician and she/he can outline a supplementary menu for you and arrange for you to have stuff that isn't on the normal menu - like a decent fish and chips or cottage pie.

Physical problems - drink
Chemo can play havoc with your kidneys and renal system so drink plenty of water or squash and keep the system flushing well throughout your treatment. This is very important. At times, you will have bags and bags of intravenous fluids added to your chemo or before/after it, and this will pile on the pounds in fluid - at which point they will give you a diuretic to get rid of it all again. But it's like a toilet cistern - the more it's used, the better it will work. It is probably true that most of us don't drink enough water every day, even when we are well. So take heed and slosh it down. Squash helps. Many trips to the loo required but worth it.

Physical problems - fatigue
Fatigue is not just feeling long-walk-tired. It is an inability to function physically and mentally and is probably what ME sufferers endure but find so difficult to explain. Some days you will just want to close your eyes and let the day wash over you. So let it, don't force it. There will be good days, there will be not so good and (remembering to take each day as it comes) don't push yourself or get annoyed if you can't concentrate on that crossword or book, or you just feel like dozing all day. That's ok, it's your illness, your body and no-one should be hitting you with a deadline right now. Often it comes at the same time as nausea so eyes closed/headphones on is good for both.

Cannulas - uncomfortable and impractical

Physical problems - long lines
If you are in for a while, cannulas (needles) in your arms/hands are uncomfortable, impractical and inefficient. You will probably have a Hickman line inserted into your chest cavity (sounds worse than it is) or a PICC line in your arm. This allows for intravenous fluids, including chemo, antibiotics, blood, platelets and drugs to be administered quickly and easily, and bloods taken for testing through the same tube(s). Once in, they need looking after and dressing once a week. They shouldn't get too wet so I used clingfilm to keep mine dry in the shower before I managed to get a special waterproof protector prescribed for me (ironically not by the hospital but the district nurse). This is a brilliantly simple device which keeps the dressing dry.

The Limbo waterproof dressing protector. Easier than clingfilm

My first PICC line was mistreated a little and pulled out further than it should have done whilst the dressing was changed. This was dangerous as it meant the line was stopping short of the chest cavity and I ended up with a DVT, or clot, as a result. It also had to be taken out and a new one put in the other arm. Add to this an infection and a very swollen arm and you can understand why I looked after my new one - and made sure everyone else did too, expert medical staff or not. This was MY line and I had to put up with the problems incurred by mistreatment of it.

Physical problems - long term
My treatment was 12 weeks long, and with delays that became 16 weeks. That's a long time and the chances are you will feel awful for a good 25% of it. You steel yourself for these times because you expect them, but what is often overlooked is the long term effect of chemo. It is accumulative, so you might start by feeling great but gradually over time, it will wear you down and you have to accept that you will not run a marathon or ride the London to Brighton until the body has gradually recovered from the effects. However there is nothing wrong with gentle exercise and when you can, do. Ignore the lift, take the stairs. Go for a walk, even if only to the end of the corridor and back. Set yourself achievable targets and unless you simply can't drag yourself out of bed, do a little every day. It will get the endorphins moving and make you feel better physically as well as giving you a sense of achievement. Some long term effects stay with you for a very long time, I understand. The neutropenic feeling of 'pins and needles' in your finger tips and feet is one of them and it is a strange feeling.

Other hints and tips - routine
If you are used to a daily routine at home, being plunged into the relentless hospital environment is alien and often upsetting; the hospital operates 24/7 and at busy times you are, with the best will in the world, just another patient in Ward D3/Bay 1. Many wards are understaffed and they won't have time to spend nattering with you. Try to establish a routine - wash or shower every day (if possible - if not ask for help), get dressed during the day and change into bedclothes at night. Bring your home comforts eg a cosy blanket and a framed picture or two to make it feel homely. Try to establish a normality which you may not feel - in the long run it will help you feel more like the normal 'you'.

Other hints and tips - keeping in touch
If you are in hospital, who is fielding all the enquiries into your health? Can they cope with it? Can you cope with it? When I first found myself in Winchester after surgery I put up an innocent 'Thank you to my friends and family for your support' post on Facebook. It received 140-odd 'likes' but almost as many queries into why exactly I was there and what was happening to me. People took bets on whether it was a heart attack or a stroke. I realised very quickly that I was going to have to keep them informed, or someone else - Sally probably - would have to. Hence the blog; I'm not advocating that everyone should write a blog but I would advise you to keep notes - on your treatment, your thoughts, the journey. If nothing else it will help you separate one day from another and you may find it cathartic, as I have. Social media, if it is your thing, is a very useful way of staying in touch with friends and well-wishers; as is email, telephone and texting. It will help to keep people informed and off your back and as importantly, off the back of the person back in headquarters who is probably going through the mill just as you are.

Which brings us to visitors. There will be times when they shouldn't come - for instance when you are sans immune system and they have a sore throat. There will be other, borderline, cases when well-meaning visitors will just pitch up and you may feel unable to cope with them. Don't be afraid to say "No" and encourage your headquarters to say "No" too, if you feel unable to cope with seeing people and making small talk. If they don't understand, explain; if they get snotty, ignore them because they are just being selfish. Most people will understand if you are not up to having visitors and will leave you alone.

A faintly ridiculous state of affairs in the 21st century

Other hints and tips - internet access
In an age where your local Park & Ride bus offers free wifi and certainly all trains that go further than 30 miles from their starting point do the same it seems faintly ridiculous for a hospital not to offer free wifi access to the internet (even if it is locked down in some areas to avoid abuse or over-use). Indeed, most hospitals and NHS Trusts offer free wifi access as standard, especially to longer term patents who may require it carry on their businesses whilst receiving treatment. I was therefore astounded to find on arrival at Southampton, that there was no access to the internet other than through standard 3G or the ridiculous contracted system they have in place in most of the hospital which involves an antiquated touch-screen monitor and a TV/phone/internet bundle that you need to take a mortgage out to pay for. This system is clunky, the screens are rubbish, the interface is poor and as far as value for money is concerned, don't get me started. There are a few, free services like outgoing telephone calls to landlines (beware - you pay through the nose for incoming), free radio (certain channels) and TV (five channels but only between 8am and midday) but the rest of it is a big con. A good book is much better value.

With a bit of encouragement and information from a friend I took the bold step to write to the CEO of Southampton General to explain that I was to be in hospital for the best part of 3-4 months and really could not exist without internet access to my own devices (not possible through the incumbent system). I was rewarded, for which I am grateful, by being granted access to one of the University routers. But I really shouldn't have had to do that and although I haven't passed that access code on to anyone or let on to many people about having my own personal access, I have been sorely tempted to make a big deal about it as it is ludicrous to (a) get locked into a silly contract and (b) deny what is these days deemed to be standard service.

So fight for it, and make a fuss, if you find yourself in this situation. It's bad enough being stuck in a hospital bed for weeks on end but if you are denied proper access to the outside world it becomes a problem on a whole different - and expensive - level. I for one relied on my phone texts, emails, social media and Skype to stay in touch.

Other hints and tips - ask!
This is your treatment and you are entitled to know what is going on. If you don't understand what is happening to you, ask. Ask to see your records. Query a decision if you think it unsound or you don't understand what they are doing; the clinical staff, for the most part, will know exactly what they are doing and why; the problem comes when it is not fully explained to you, so don't be afraid to ask. Remember who to ask though; the cleaning lady will not be in the best position to advise you on your treatment; the consultant will not take kindly to being asked to toast your bread or bring you a cup of Horlicks at night. The health assistants will be happy to make your bed, answer your buzzer and refer on, make that cup of Horlicks, weigh you and do obs. The nurses are the front line - they carry out the doctors' orders and advise back to them. They administer the drugs (including the chemo) and sort out the problems. Befriend them, they can be your staunchest allies. Don't hack them off or you'll get nowhere. Try and call them by their names, not 'Nurse' (especially if it's a Sister).

Other hints and tips - be patient
The staff are busy; you are one patient in many they are juggling to look after. So when they say "I'll put your antibiotic up at 3pm" don't be surprised if it happens until 4pm. Unless it is critical to you timing-wise (for instance you are having a procedure prior to going home and someone is waiting for you to finish), be patient - it will happen but when the staff are ready for you, not the other way around. But don't be afraid to gently remind (nag) if it gets ridiculous. Watch out for being promised something at 8am or 8pm when shifts change and handover instructions may get slightly lost.

Other hints and tips - going home

Going home: waiting for your Discharge Letter and Meds

There will be times during your treatment when you will hear the magic words "we're going to let you go home for a while". You hopefully will be let home for good at some stage too! That statement from the consultant is the first step in a process which involves a more junior doctor writing your Discharge Letter and that letter being sent to the Pharmacy to prepare your take-home medications. This all sounds very simple but the combined process can take hours, if not days so from experience I have found it a good idea to befriend the junior doctor and ensure that he or she is going to write that letter today, then gently nag the nursing staff to chase the meds from Phrmacy. All this should be done at least 12 hours ahead of your intended departure or you and your loved one who has come at a specific time to pick you up will be sitting there for hours. And the pharmacy shuts at 6pm (and 12 noon on a Sunday). I have witnessed scores of people waiting, waiting and waiting for their meds so they can leave.

"And how are you in yourself?"
The question still rings in my ears, along with the statement "you survive the treatment, you survive the cancer". There will be times when, however upbeat you might feel about your treatment and the eventual prognosis, you will hit the lows. Part of it may be psychosomatic: there is so much physical stuff going on and you are, after all, being poisoned deliberately it's no wonder that it can mess with your mood; part of it is being separated from your loved ones, concern for how they will cope in your absence, just how unfair it all is (why have I been singled out for this?); and some of it will be purely emotional. I was given gas and air for a bone marrow biopsy; one of the side effects of 'laughing gas' is to feel quite emotional and I ended up with tears running down my face for no apparent reason. I had another experience of this happening but without the gas and air. Emotional build-up is understandable and often it is difficult to talk to people about it. Remember that there are people there for you who can help - the Macmillan Nurses are fantastic and they offer (often on the hospital site) all sorts of help from a chat over a coffee to aromatherapies, reflexology, massage and other services. Make use of them - they are free and they know all about how to listen support you when you need help. The Lymphoma Association is another, more specific, organisation who offer help for free and with expertise in the subject. They can offer straightforward and easily digestible information on your particular type of lymphoma, too. The key is to remember that you are not on your own.

Chapter 27 - The Yoyo

I made a hasty readmission on Saturday night once I realised that I was obviously becoming unwell and it was nothing to do with watching Broadchurch. But despite initial optimism, I didn't make it back home on Sunday, or even Monday and to be honest I would have been kidding myself to think that going home again then could possibly be the right thing to do. Before Sally and I left home on Saturday evening my temperature began yoyo-ing between 35.5 and 38.4 and I was perhaps ill-advised to take paracetamol at home since it obviously masked the underlying problem. I was shaking violently and despite having a high temperature felt cold; at least until re-entering the hot-house that is Southampton General.

My temperature, once admitted on C3 AOS ward, was clocked at nearly 40! In fact it took the nurse five devices and several attempts to get a sensible reading; I was seriously dehydrated and couldn't stand bright lights; even the old fluorescent tubes on the ward and the screen on my iPhone dazzled me. An hour later with an i/v antibiotic on board, I was back down to 37-something and feeling a whole lot cooler, and they wheeled me from the relative peace and quiet of C3 AOS to the noisy clatter and bustle of C4. I hadn't been back on this open bay for some time and it doesn't seem to have improved in my absence. Nothing you can put your finger on as the staff are great and everything is there (you even get a hot cup of tea at 7.30am) but it lacks the camaraderie and 'family' atmosphere of D3. It's all a little impersonal.

Neutrophils following a similar pattern to my platelets; slow later recovery

Topping Up
So the next things to tackle were my blood counts which were seriously low:

Neutrophils: 0.0
Platelets: 20
Haemoglobin: 62

Nothing much to be done about the first one but they gave me a pool of platelets, followed by no less than three bags of whole blood to tackle the rest. Whole red blood has the effect of thinning down the platelets, hence the extra platelets first.

Investigations
Blood cultures were taken to see if anything nasty was growing, a urine sample for the same reason and sputum sample to cover all the angles. A midnight X-Ray topped it all off. Try doing all that at home, whilst continuing with 8-hourly i/v antibiotics.

By Tuesday, and the smiling Prof Johnson's rounds (at least he resisted the temptation to say "I told you so", bless him), it became obvious that I am going nowhere until (a) my temperature stops yoyo-ing (which it had by then for 24 hours) and (b) my blood count has recovered to a point where they can stop the antibiotics, or at least revert to tablet form, and send me home without risk of further spikes and infection; that means many more neutrophils than the 0.0 of several days and even the heady 0.1 (!) of Tuesday. A glance at the chart above (thanks, Nanda Basker, for this and the previous post's chart of platelets) shows the sorry story rather well and reinforces just how vulnerable you are without an immune system! So I go nowhere in the hospital without a face mask and badger the lovely Spanish Nurse Eli for as much information as possible about my blood counts. The cultures and urine test have all come back as 'negative to date', which is good news; nothing evil lurking in the system, then.

No less than three bags of blood required

Only 24 hours later and - hey presto! - I trebled my neutrophils to 0.3, platelets positively skyrocketing at 34 and haemoglobin 92, so all looking much more positive for going home on Friday or Saturday.

24 hours later again and although platelets have dropped to 22 my neutrophils are well on course, at 0.5.

An Eventful Morning
Open wards are not the quietest of places at the best of times but this morning (Thursday) I was more than a little put out when at 4.45am my next door bed neighbour, who obviously couldn't sleep, struck up a loud conversation with another insomniac, covering a broad spectrum of topics from the price of tractors ("ridiculous") to the trouble with trying to sleep on open wards. I did make a few protestations along the lines of "sshhhh" but was greeted with a jovial 'oh, you're awake too, isn't it awful, still as you're awake join in the fun' sort of chuckle. After an hour of incessant and loud chatter, during which I did my best to jam my head between two pillows (to no effect whatsoever) they eventually gave up and all went quiet. I got my own back on one of the miscreants later when I walked past his dozing form and shouted "wakey wakey!" as loud as I dare. He jumped. Revenge is sweet.

More line learning. This is going to be a good 'un

Having had so much excitement for one morning I was a little surprised to get more in the form of Yet Another Move. Apparently ward C4 has a bed crisis and a broken window, necessitating me to be moved up one floor to D2, opposite my old familiar ward D3. I was not upset by this at all - far from it, it's a nice airy ward and the open bay I am on contains only four beds. Furthermore it is staffed mostly by many of the same people as D3 so I know most of them.

When the porter arrived he checked my name and asked if I was to be taken up on my bed with my belongings. I replied no, I was very happy to walk. Much sucking of air through teeth and the porter commented "well I'll have to check on that with my colleague, it's a bit irregular". I did make a half hearted attempt to explain that putting one foot in front of the other was not only within my capability but actually quite good for me but I giggling too much to reply at all.

But walk I did - the result of which meant that the bed stayed put and the porters trudged along behind me like a couple of sherpas to our destination one floor up. I think they had a job to keep up.

Life on D2

Horace, you have been surpassed by a newer, prettier, lighter version

To be honest life is not much different but there is a view, a constant parade of familiar faces - Theresa, Grace, Debbie, Edit - and the whole place has a light, airy feel to it quite opposite from the oppressive darkness of C4. The only downside is that one of the two nocturnal miscreants from C4 has been sent up too and is in the next bed. If he tries it again tonight he's so much hospital fodder.

One thing - they've got a dead posh new type of Horace on this ward.

But it looks very feminine, doesn't it, so can hardly be called Horace. Suggestions for appropriate names on a postcard, please, or in the comments box below.

Chapter 26 - Not quite over yet

It is 8.00pm on Thursday and I am sitting in the D3 dayroom awaiting a bed on a ward a floor below; so it's not over yet.

Charlie Hellard getting his Curtain Call award for best supporting actor

Having been home since last Saturday and the final chemo, I have felt really, really good. I have done normal things again, socialised, popped into rehearsals and witnessed Charlie Hellard receive his 'gong', fixed stuff around the house, been shopping...and was lulled into a false sense of security regarding the state of my immune system, I guess. I should have remembered that at this stage of this final three week cycle - Day 10 - it is the most dangerous time for me to catch something or bleed to death.

Monday saw niece Jo Greatorex come and stay for 24 hours - on a UK mercy mission for a couple of weeks so great to catch up as Brisbane is a hell of a long way away!

Jo, Rosie and Sally enjoying a glass of vino. Not sure Rosie liked it!

Tuesday morning at Winchester Hospital (8am and slithering around on icy roads) I went to have my bloods tested as usual and the call duly came late morning that my platelets were down to 28 so they requested my presence on Thursday for a blood test at Southampton and "bring a bag in case we keep you in".

11.30am Thursday saw Sally and me arrive on time for my test and within half an hour I learnt that my neutrophils are rock bottom, my platelets at an all-time low of 5 (yes, five) and they want me to admit me to D3 at 4pm to give me platelets and keep a close eye on me. All fair enough and despite plans to go and wander round IKEA whilst waiting for my bed, I was persuaded that even this innocuous pastime of browsing could be a tad dangerous in my condition so I stayed in the hospital as asked, had a cuppa at The Macmillan Centre and compared notes with Steven, a fellow Burkitt's sufferer on D3 going through the same regimen, and waited.

Spring is sprung!

Five hours later I had my supper (famished and very relieved that I brought with me a huge bar of fruit & nut chocolate bar) and was still waiting for that elusive bed, having been told late afternoon that I would have a sideroom on D3. And the same old stories: one old lady in the day room waiting for transport home cried and cried for her lift home but after four hours her daughter had to arrange babysitters so she could come and pick her old mum up; another chap admitted at 4pm was sent home again at 7pm, having had a totally wasted day; another couple waited next to me for two hours for their take-home meds. This is what lets the NHS side down, I fear. And with the best will in the world, these delays have an inevitable knock-on effect to clinical treatment.

A brisk walk in a blizzard

So I was not a happy bunny, having wasted the best part of my day too, sitting around in a hospital day room, becoming more neutropenic - loss of feelings in fingers and a couple of blisters in my mouth. As it happens, the blisters were from hot food rather than being ulcers. At least I managed to administer my own evening meds, since no-one was here to do them for me or to take them away (of course, you are trusted to do it at home but not in hospital). As for keeping an eye on me, ha! No-one was taking any notice of me, let alone keep an eye on my health...

So eventually I got my food; my 'lift' - I can't believe they sent a wheelchair to transport me - to C3 AOS, a temporary emergency admission ward, came a bit later and eventually I was admitted to a bed. As my PICC line was blocked, a new cannula was necessary to administer platelets. Not the best of nights and would really rather not be here.

An interesting graph below shows my platelet situation from Nov 10th to February 5th (showing a pretty healthy rebound after Chemo #1 and 2). Note the slow recovery in January and the most recent plummet to rock bottom.

The state of my platelets since mid November - they recovered well after the second treatment but not after the third/fourth

So, after a stay of 24 hours and two transfusions of platelets, the Prof sent me home again but on strict instructions to be very careful not to catch anything or put myself in danger. My temperature is up and down a bit, sometimes well below normal and sometimes rather too high for comfort, so Saturday has been a day of standing by to go back to hospital if necessary, monitoring the temperature and taking it very steady.

I have to go back down to C3 AOS on Sunday morning for blood tests, but hopefully I will be coming home again straight after. Not out of the woods just yet but hanging on in there. Fingers crossed - yet again.