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.

Chapter 25 - The light at the end of the tunnel

I know we have been talking about the proverbial light at the end of the equally proverbial tunnel for ages now - probably as far back as completing Stage 1 of the chemo. But now I really do feel as though I can see it properly. I am loathe to be too optimistic because each day brings new challenges, but with little chemo to go and the prospect of being sent home (almost) indefinitely once it's finished, I can't help but feel a bit like a climber who has the peak in sight at last and is secretly unfurling his flag...

My old mate, Horace.

What happened to the hallucinations?
I wasn't, as most readers will be aware, looking forward to this round of chemo - last time I had R-IVAC, the Ifofsamide part of it gave me the dreaded hallucinations, nightmares, cognitive impairment and a general malaise which is difficult to describe in any but the most derogatory terms. To play it down a bit I even found this lovely cartoon in The Oldie (below) which summed up the funny side of it if nothing else.

But - and he says this whilst hastily looking around for a piece of real wood to touch - so far so good without any real side effects except putting on 4kg of fluid (rapidly addressed in the form of a strong diuretic which has worn the shoe leather between my bed and the loo) and a slight fuddle-headed feeling of restlessness. Or is the latter just because I don't have anything more serious to concern myself with just at the moment?

The working week
My working week really started on Monday when, rather homesick and full of trepidation as to what the final treatment might bring, I returned for my outpatients appointment with the Prof, after which I was readmitted, with platelets boasting a heady count of 79! More than enough to get started apparently. The first night back in after being home for so long was not much fun at all. Too noisy, impersonal and hot by far.

Tuesday, and Docs' rounds, brought more optimism - with a reduced final dosage of 80% strength, in defference to my reluctant platelet count - Dr Davies seemed quite confident that I should be allowed home after this treatment on Saturday, for at least a couple of days. My last intrathecal is due for next Tuesday 3rd Feb (but will my platelet count allow?).

My chemo started at 1.30pm and the first day was pretty full on - basically a full programme of drips from Horace until well into Wednesday morning, to be repeated over the next 24 hours, but with the intention to pull back the starting time by two hours each day so that Saturday home time becomes a reality. A much better night's sleep on Tuesday, homesickness not so bad, very quiet night nurses (thank you Christina, for a blissfully quiet drip change!). And no real side effects, so a bonus.

I watched in horror as a near neighbour had a bad reaction (as many do) to the Rituximab antibody which is the precursor to some chemo regimens; I had a similar reaction the first time but his was much more violent with shakes and acute breathlessness; but the staff soon had it, and him, under control and all was well.

Wednesday and Thursday passed fairly well, notwithstanding my impatience to be done with this stuff for good. By Thursday afternoon, I was suffering from exercise withdrawal so walked some 3,000 steps to the end of the hospital and back again four times, plus four flights of stairs. I am determined not to slip too far back in re-attaining some level of fitness which has been progressing so well at home. Boring scenery compared with the wide open fields, but it'll have to do until I can get some more of the real thing.

TGIF
Friday - and more Docs' rounds and more good news: providing I continue to progress as well as I am doing, Friday night might hopefully be the last night in hospital! I will have to come back in for my bloods, PICC line dressing and intrathecal on Tuesday but then, hopefully and infection free (PLEASE!) it should be a case of supplying bloods at RHCH every 48 hours to monitor my status. Wahay! (he says rather quietly to himself in case it doesn't happen like that).

It's been threatening to snow in Hampshire but so far our county seems to be the only place in the country to have escaped it. Which is good news as Lizzie is planing on making a surprise visit on Friday afternoon from Devon! What a lovely treat for Sally that will be. And for me too!

Went for another walk round the hospital this morning - and what a beautiful morning it was too! Even Soton General looked tantalisingly pleasant in the sun.

And it keeps on coming
More stuff to fit in now - my haemoglobin levels are a bit low so am going to have to squeeze a blood transfusion or two in between chemo - this shouldn't change anything as the nurses (who know me by now) are on the case and planning it all to the minute. In fact they have nagged the duty doctor into doing my discharge letter and have arranged my take home meds already - a day early!! They are sweeties...or I must have a reputation for nagging.

Safety in numbers
To make up for it, I am being plied with  huge number of tablets, pills and potions: I counted 12 in the morning (anti-sickness, anti-fungal, antibiotic, anti-everything), a couple of horse-pill size jobs (chewable magnesium, dispersible potassium), plus eye-watering eye drops to prevent conjunctivitis - common with this chemo. Then another lot at lunchtime, tea time, and bed time. I am rattling.

In addition, I have to promise to drink 3 litres of fluid on Saturday after my chemo - because they will kindly send me home with Mesna tablets (to protect my bladder from the chemo) instead of lengthy i/v stuff, but it's imperative that it is washed down with plenty of water, or there can be trouble.

Rebecca, Mike, Pauline, Paul, Julia, Jan, Tim and Helena (Jacob took the pic) 

Curtain Call
Sadly the timing was lousy this week for my intention to attend the Curtain Call Awards at the Grand de Vere Hotel, with my fellow thesps from Cheriton and the chance to catch up with some of my wider circle of thespian friends too. so I had to make do with a photo of them toasting me (which I reciprocated), whist I soaked up a freshly squeezed plastic glass of orange squash and a bag of blood.

Great celebrations as young Charlie Hellard won his award for Best Supporting Actor in a Comedy but it's next year for Rebecca and me, I fear!

Cheers, m'dears... (honestly, there's no gin it it)

Chapter 24 - The waiting is over

Trying out the new walking boots - very comfy!

It's now over a month since I went home for four days at Christmas and since then I have become de-institutionalised, if there is such a process. In other words, in the same way as I became institutionalised into hospital life for the three three months before Christmas, four weeks of restful recuperation, peace, quiet, exercise, good food and the company of my family has brought normality and increasingly good health back into my life.

Sunny skies and soggy walks - great for the soul.

On the way up...
But all the time, the shadow of my unfinished business at Southampton General has been lurking over my shoulder: several visits to the Prof's outpatients clinic and the odd blood letting at RHCH with follow-up phone calls to the Lymphoma nurses have seen my poor old depleted platelets gradually rise from 20, to 22, to 24 and then a giant leap to 51 and onward to 79. The magic figure to restart the (final round of) chemo is 75, so the latest visit to outpatients has ended in readmission onto the familiar D3 where I was greeted by hugs and high fives; what a lovely lot these people are. What a shame I associate them with being ill.

There's something satisfying about logging!

My four weeks at home have not been wasted. I am convinced that I have recovered more quickly in the comfort of my own home than I ever could have done here in hospital; I have walked two to three miles a day, done odd jobs around the house (including my ambition, to chain saw and split a load of firewood), caught up with a lot of recorded TV programmes, eaten like a lord and slept like a baby. Yes, I've had a cold - but who hasn't this winter?

...and then back down
So coming back into hospital where, in less than two hours I have had my blood pressure, SATS and temperature taken twice, my neighbours have had copious noisy visitors and I have been forced to listen to Eastenders and smell the hospital food close-up, would have been a real shock to the system if I wasn't steeling myself to slip back into the routine.

Timing could have been better - this week I shall miss the first read-through of Third Week in August, the summer outdoor production at Cheriton, and on Friday I shall have to forego the chance to go to the Curtain Call Awards (*ahem* - did I mention that I was nominated for a gong?).

And then there's the treatment itself: this is the R-IVAC regime, the hallucinatory, weird, nightmare-inducing gaga juice. Not to mention its nausea-making quality and the effect it has on my immune system, including those precious platelets I have been nurturing and incubating for the past month. The upside is that the Prof has decided to give me an 80% dosage this time, in the interests of a speedier recovery afterwards. The other upside is that it's the LAST CYCLE.

My girls (well, three of them): L to R Piggy, Rosie, Sally

Winter drawers on
The weather over the past month of January has been, for the most part, pretty good - cold but sunny, necessitating several layers of warm clothing, scarves, hats and gloves outdoors and roaring log fires and hot water bottles indoors. Today, before my return to Southampton, I took Rosie for a long walk and admired the snowdrops and catkins which are heralding the spring; but the forecast for Wednesday onward is for sleet and snow - the tail end of the storm which is currently affecting the east coast of North America.

Although this is unlikely to affect me in this hothouse it might just prevent Sally getting to me later in the week so I am hoping for her sake - and Lizzie's and Zoe's too, both of whom have to drive some distances for work - that we don't get hit too badly. I only have enough undies to last a week.

The fundraiser goes from strength to strength
The way the donations to the Lymphoma Association fundraiser has kept on coming is nothing short of staggering. The last few days have seen some £1,400 + Gift Aid added to the pot - from the combined efforts of the staff, friends and customers at the Flower Pots, our local. The total to date is now £7,820 - with Gift Aid it's over £9k! Thank you, all those who helped to raise this extraordinary sum and spread the word; wouldn't it be great to get to £10k, double the original target?

So, here we go on the last rollercoaster ride... roll on three weeks' time.

A reminder that spring is nearly here!

Chapter 23 - The Waiting Game

Two things I have learnt since this whole business started: firstly that nothing goes according to plan and secondly don't make any. Plans, that is.

A favourite walk around Petersfield Heath lake

It is now three weeks since Christmas Eve and the start of my four day exeat. Since then I have been readmitted to hospital only once, spent two nights on the ward, had the first (antibody) part of my final round of chemo and been sent home again because of low platelet count (20-30). I have been back to the hospital twice since then, each time as an outpatient, and had my bloods taken three or four times but still the platelets fail to grow in number. For more info on low platelets, have a look at this on the internet.

There are obviously enough to stop me from bruising, bleeding and so on but at the latest count there were 24 (don't forget I started off with over 450) which is really only a quarter of the amount required to restart the chemo. The consequence of administering more chemo with a platelet count this low could be fatal: chemo knocks out the platelets (as well as the red and white blood cells) and if they were to give me the last round now I would, in all likelihood, end up with no immune system whatsoever - permanently - leading to a catastrophic bleed or infection and probably death. So it's a no-brainer really, as far as that is concerned.

Can anything be done?
Not really, except wait for the body to recover. The bone marrow biopsy I had taken before Christmas showed that the bone marrow is producing blood cells - but very slowly. That's good news - it means the bone marrow is working and is likely to recover, albeit slowly, over the coming days/weeks.

So why the delay in recovery? Well, a quick look at my platelets graph which sadly I cannot show you here, says it all - I started with 450+ before the first treatment, which dropped to single figures after the first treatment and recovered, but to nowhere near the original count before the second treatment blasted it again and this was when I experienced that awful chronic nosebleed. Again, the count recovered but only to about 80-100 before being hit yet again almost straightaway. This time the recovery has been, understandably, reluctant and very slow. The other reason is that I am not a young man anymore.

My general level of health is, however, good - since being at home I have been walking every day - sometimes approaching three miles. I have been eating well (I'm now back up to 77kg, a full 6kg heavier than after my last round of treatment) and sleeping comfortably and getting a full eight hours. My deafness is still with me but at least I can hear in one ear.

My stamina is ok but I get a bit puffed going uphill - not surprising as my red blood count is only in the 80s rather than the 120s so I am only getting two thirds of the oxygen I should be getting - but again this will gradually increase.

A look on Google tells you that as well as exercise and sleep, you should avoid alcohol and caffeine, eat plenty of fresh veg and fruit, eat oily fish and Omega3-rich foods and get plenty of Vitamin C. My medical team didn't exactly poo-poo this but their opinion is that, whilst these rules are commendable, following them to the letter will not automatically encourage platelet recovery - this will happen when it's ready and in its own good time.

So what's the cunning plan?
More home time and slow recovery - during which I am getting stronger - more bloods and review in a week's time and wait patiently.

I have to say that, as the treatment is in four parts, when I was told that there is a strong chance that they may give me a reduced dose of the final one - or even not give it at all - this filled me with paranoid dread that the Lymphoma would automatically come back. I would not only be back to square one but back in the box - since chemo would be out of the question, it would appear as though I would be between a rock an hard place.

I find it difficult to keep up but I'm getting there!

But I am assured that (notwithstanding the fact that no-one will guarantee it) the three very intensive treatments I have already had will have already done the job they were meant to do, i.e. kill off the cancer. The final one is a sort of 'belt and braces' job to make sure there is nothing left behind.

So on one hand, as I slowly recover from what I've already had and start to shave again (it's been over seven weeks since a razor touched my chin), my stamina and general health improves and I start to enjoy 'normality' I'm not too upset by the thought of not having to go through the last treatment - which is the hallucinatory one too - but on the other hand I really want to make sure I properly cured before I resume normal life. Burkitt's is, after all, the fastest growing cancer around and you don't get a lot of warning.

The motto continues to be: take each day as it comes. So that's what I'm doing, and although I can't plan anything - like will I be able to go to the Curtain Call Awards on the 30th? Or go away at half term in mid-Feb? - I am extremely grateful I am playing the waiting game at home in comfort rather than a hospital bed, surrounded by other ill blokes. I am keeping myself busy, avoiding daytime TV at all costs (let's face it, that particular disease is incurable) and trying to be as normal as possible without overdoing it.

It could be a lot worse...

Chapter 22 - The Oxymoron

One minute I was back on D3 awaiting my last bout of chemo - date 29th December. Aim: to be home by about 22nd January or thereabouts. The next minute I was back home - well not exactly the next minute: I was in hospital from Sunday night, had the R of my R-IVAC chemo on Monday (this is the antibody which flags up the tumour cells for the chemo to attack so is not strictly chemo in itself) expecting to start the chemo proper on Tuesday. All that changed with the Prof's rounds when he declared my platelets far too low (13 and they should be over 100), and ordered a bone marrow biopsy and a pool of platelets to be followed by home leave until the following Monday 5th.

Platelets: get in - and stay in!

It's curious, this platelet business; although it is part of the body's immune system it seems to work independently of the other cells so, although my red cell count is so a little bit on the low side, my neutraphils, the White Crusaders, are well up where they should be which is good to know.

On my way home - again...

Bitter-sweet
Hence the oxymoron: going home for a few more days is definitely bitter-sweet. Sweet beyond measure that Sally, who was going to have a rather lonely week's holiday (schools go back the week after) will not be on her own after all, and sweet that I can carry on stuffing myself with good home cooking, sleep in my own bed, continue exercising in the form of walks and do odd jobs. But bitter inasmuch as I want to just get on and get this last round done and dusted so I can get on with my life.

The Cunning Plan
To stay at home until Monday afternoon, have bloods taken at Alresford Surgery on Friday, attend the Prof's outpatients clinic on Monday and bring my overnight bag in readiness for readmission. We all should know by now that plans never run on track! The 'early morning' blood test happened at 12.45pm and was not even due to be picked up until 3pm, so any chance of my medical team in Southampton receiving a result on Friday was zilch. So having heard nothing from the hospital over the weekend I assumed that here was nothing life-threatening to stop Sally and I enjoying another weekend together.

At home with my gals.

Extended home leave has been wonderful - building up the walking distance gradually (did a 2.5 mile walk on Sunday), eating well, enjoying one another's company and sleeping through the New Year's celebrations entirely, something I haven't done for many a year. My sister Sue casually reminded me of the time I rang her to wish her a Happy New Year at the very start of 1972; she had a four month old baby, the next day was still a working one in those days and she was not best pleased at being woken up. The casual reminder was not, thankfully a veiled threat to return the favour some 40 years later; to be honest I was so tired I would probably have slept through anyway.

Much time spent in front of this, including New Years Eve.

We have done 'normal things' - bought a new pair of walking boots in the sales (now there's a challenge!) - visited Manor Farm at Bursledon for a walk in the woods, bought crumpets for tea and munched them in front of the fire, caught up on a few TV programmes. As a complete aside, for some reason my wifi connection at the hospital no longer allows me to watch any catch-up TV, YouTube, iPlayer etc - not even live radio. Obviously some new blocking system has been introduced to deter users from wasting their time. An interesting pount, however, is that they allow Vimeo (the alternative YouTube) and facebook, twitter etc. A curious way to ban things.

So with mixed, more bitter-sweet, feelings I went back to hospital yesterday (Monday 5th) for my outpatient's appointment with the Prof. Sally went shopping and was standing by to bring up my bags later, my bed on D3 having being reserved for me earlier. Obviously outpatients clinics over-run as well and it was an hour and a half before I met with my consultant, Prof Johnson, who basically informed me that my platelets on Friday were still too low (30) and he hadn't yet received the results of the bloods I gave when I arrived. The reason for the low platelet level? Not sure really but the good news is that my bone marrow is producing platelets, albeit slowly, there is no sign of Lymphoma in the bone marrow and no sign of the body making antibodies to attack platelets externally infused - which was one worry.

Some gentle exercise is doing me good, I'm sure.

More home leave!
So my stay on D3 this time didn't even rumple the sheets - and before I knew it I was off home again for at least another night, with instructions to ring in the morning - which I did - to be told that Monday's platelet count was down again, to 20! Oh dear, oh dear... I am assured they don't want to infuse more platelets (good, the last lot didn't agree with me) and that the count will eventually catch up and once it does will 'rise rapidly', a sort of snowball effect. I hope they are right and that the damage hasn't already been done to my platelet making capabilities.

One option if the level remains lower than ideal is to give a reduced level of chemo, but we'll see. My next instruction is to go to RHCH Winchester first thing Thursday morning for another blood test and await the results a couple of hours later - with overnight bag ready again and a bed reserved on D3. And so it goes on...

No problem with my appetite at the moment! Have put on 3kg.

Deafening Silence
The left ear continues to provide another oxymoron; it is annoyingly claustrophobic and varies from total silence in that ear to a deafening roar when my own voice resonates back at me. I can't determine where noises are coming from and I must be driving Sally mad with my constant "Pardon?", "Sorry?" and "What?". I literally have to turn my head so I can hear anyone or the TV, and in a crowd it is impossible to pick out a particular voice from the ambient prattle.

Having been told (albeit second hand) by ENT at the hospital, after much chasing, that my case is 'not high priority' and therefore they have 'no immediate plans to review' I am beginning to see red and have even started investigating having treatment privately, which may be part paid for by a medical insurance policy through my work. If nothing else it might kickstart the NHS into doing something; I fully understand that they may not want to start messing around with procedures and minor ops whilst my blood counts are up and down like a yoyo. But that's no excuse for not telling me that, and properly, rather than via third parties.

So, as far as the hearing is concerned, I see nothing I can do immediately except put up with it until my body recovers from chemo, which could be some weeks yet. Regarding platelets again I have to be patient and wait for those numbers to go up.

Come on, body, let's get on with it...