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.