Chapter 3 - Short & Sweet

Short but Sweet

I had never realised how comfortable my own bed was! Hospital beds may cost £1,000s but why do they use yoga mats as mattresses? And how blissfully quiet. Still made many trips to the loo and woke up at 5.30am on the dot, awaiting imaginary obs but in comparison to hospital I was in heaven.

So the Cunning Plan was:

1. Rest up for a few weeks before starting chemo on 5^th November – go to Margate for a week and take some sea air, meet with old friends en route etc.
2. Pop in as outpatient Monday 13^th for a bone marrow biopsy
3. Pop back again 8am Tuesday 1th for ECG (beyond RHCH’s powers of co-ordination to make the two on the same morning)

Easy. First days back according to plan – diet improving, bowels active, aided and abetted by Lisa Smith’s home made pumpkin soup, surgery healing, all well – relatively speaking, ‘just’ the chemo to tackle. Caught up with the fab TV documentary on Genesis with Sally in front of the fire. Cosy and comfortable.

Thursday – swee’pea Kevin Gover (friend and editor of freebee newspaper, Winchester Today, which I write reviews and the odd article for) came over for a late lunch and I spent the rest of the day on the sofa with Rosie in front a log fire. Sally sadly then succumbed to a 12 hours violent sickness bug and took to herself bed, so the patient/nurse roles reversed for a short while as I dispensed paracetamol and water from a safe distance. By 11am Friday she was better thankfully.

Popped into Alresford Surgery on Friday – David Robertson, Sian’s other half, kindly dropped me in – to have clips removed from wound and redress, then a catch up with the boss at work over coffee and biscuits. Lizzie took off Friday afternoon and Monday morning from work, bless her, and drove up in the afternoon.

Sian on her hoss!

Saturday a gentle walk to the shop, met Sian Tabberer on her horse for a chat, a stroll around the village with Sally, Lizzie, Zoe (who popped over) and Rosie. Tom came over as well and it ws quite like old times with all of us around. I even managed a quick half a pint (actually a very, very slow one) at the pub with Tom and walked back – much to the consternation of many who offered me lifts.

Slowly getting back to normal. Sally and Lizzie went on a quest to IKEA (she’s buying a house in Devon and looking at ideas for kitchens etc.) – I gracefully declined, thinking it several steps too far to trudge round miles of corridors with arrows on, even if there was the promise of meatballs and Cranberry sauce.

Sunday – Tom popped over again and rearranged some firewood for us, as I felt I probably shouldn’t be hauling logs. Given the choice then of going for a walk at Hill Head along the Solent or round the Heath at Petersfield, we opted for the latter. A bit more sheltered and easy going, with plenty of seats and loo/café en route for a hot chocolate.

Note that at this stage bowels still very active – sorry to keep coming back to them but it’s a bit always relieving (!) to install a new plumbing system and get it to work properly, if enthusiastically, after some downtime. That’s one analogy anyway, and less descriptive than the real thing.

Getting a bit tired towards Sunday evening but absolutely stuffed a roast dinner down: roast gammon, potatoes, the works, followed by Strudel and custard. I really shouldn’t have done that. I will never know if this caused the next backward step but it couldn’t have helped, heaping food into a newly rearranged digestion system. So by midnight I was starting to feel bloated again, a bit like the previous fortnight ago, and Monday became extremely uncomfortable with nothing getting past the small intestine.

I duly made the outpatient’s appointment for the biopsy (rather painful but made easier by local anaesthetic and gas & air like women in labour use). Lizzie dropped me off on her way back to work and Nick Symes brought me home again a couple of hours later. Suffered in silence and real pain and asked Caroline Fairley for her advice (which I nearly always take, Caroline!) who instantly advised A&E again.

So, extremely disappointed, but gracefully admitting defeat, we repacked an overnight bag and, in much discomfort and a repeat performance of the first time, went through the ridiculously mediaeval, time wasting triage system before finally getting re-admitted to Kemp Welch. Horror story, it was all going SO well. Night shirts open at the back, sitting in corridors waiting, waiting, waiting for X-rays (they couldn’t find my notes until suddenly they appeared from a paediatric ward), more waiting. Finally back on ward and lay back hoping for the best.

Monday night, my favourite night nurse was on duty – Abi Miller, a member of RAODS I was in the Mikado with a few years ago – which made life easier until she had another go at sticking an NG tube down me. Again, I gagged and choked it back up and she gave in, bless her. It’s ok, Abi, I forgive you for this – I know you were trying to make my situation better but I would rather walk on red hot coals to be honest. In a bed right next to the nurses’ station I was inevitably going to get little sleep. Noisy, too much light, desperately bloated and uncomfortable, I spent a miserable night trying to unblock the system to no avail. It didn’t help my mood being put back on fluid drip and sips only but if it ain't going anywhere, there’s not much point in throwing good food after bad, is there?

Tuesday – a Day of Significance – no change in the bowel situation and they have taken another CT scan to see what’s happening. Funny thing, the CT scanner, you lie on a narrow bed which gets pushed into what looks like a cross between a huge doughnut and a spin dryer. It even goes round and round like a spin dryer and you half expect to find a couple of socks and pants in there with you. A distance voice says “Breathe normally”, then “Take a deep breath and hold” and it counts down 7/8 seconds as you slide out. Not an unpleasant experience. Was wheeled down on my bed (efficient), had the CT scan (also efficient) and waited for hours for a porter to take me back again to KW (typically inefficient).

The Big Significance today was a visit from Dr Arnold, another RHCH haematologist, to update me on my Lymphoma. She kneeled down rather sweetly by my bed and explained that I have a very rare form of non-Hodgkins called Burkitt’s Lymphoma. Whilst it is still treatable and with realistically optimistic outcome, it is an extremely aggressive and produces rapidly fast growing tumours. So much so that the difference between my post op scan and latest scan shows significant growth of tumours, one of which is causing a bit of concern being rather too close to my kidney. So suddenly, it’s all change:

• ·      No going home anytime soon
• ·      Instead being transferred to Southampton General asap
• ·      No outpatient chemo at the lovely Nick Jonas Ward at RHCH
• ·      Start chemo immediately in Soton as an in-patient
• ·      Could be in for a rough time – aggressive treatment to treat an aggressive disease
• ·      Could be very susceptible to infection at low points so in isolation if necessary

Obviously a bit of a body blow and rather a lot to take in, especially as I was feeling rough still. I then had to explain this all to Sally when she came in later and we hit a low point then. There’s only so much positive spin you can put on these things at times, and we both needed time to adjust to the news.

Chapter 2 – Post-op and Home Sweet Home

An Ill Bloke’s Blog – Part 2

Recovery Process

Once back on the ward, first in Kemp Welch then on Mr Miles’ ColoRectal ward Wainwright, the slow process of recovery from surgery began. Sips of water only, catheter, PCA morphine pump, which I could control when in pain, all were removed and gradually I was able to get out of bed (painfully) and even go for walks up and down the corridor. Everyday it was two steps forward in the morning, one back in the afternoon. So feeling reasonably good before lunch, then deteriorating so that by the time visitors arrived mid afternoon/evening I was nearly always rough again.

Rough but at least clean shaven!

I had a few visitors – Nick and Marion Symes, Paul and Carol Raworth, and Craig Robb from Cheriton, Owen from work, Ian Lock my old friend and business partner (who had to be bear witness to an extremely unpleasant and violent vomiting session and leave rapidly), sisters Sue, Steph and brother-in-law Mike.

But every day, from Day 1, there was Sally, my lovely wife, ever faithful by my side and flanked by daughter Lizzie who has journeyed up from North Devon three times to date and taken time off work to be there for us both. She first travelled up on the Monday I was admitted, bless her.

Zoe – who drives medical equipment to theatres in hospitals from Truro to Papworth - put in appearances most days when she could get in (sometimes actually delivering so proudly announcing she was parked in an ambulance bay!). She’s also been a tower of strength throughout – texting when unable to visit. And Tom, too has never been far away, texting every day and visiting every weekend from London where he works.

The Big C

Mr Miles’ comment of “have you heard the good news?” quickly followed by “it is Lymphoma, as I guessed” met with a “that’s the good news??” from me. But I quickly realised he was not joking. Lymphoma is, in most cases, treatable, ‘curable’ and the prognosis is pretty good, certainly in comparison with some cancers that affect the bowel. What they didn’t know at this stage was exactly what type of Lymphoma but probably non-Hodgkins (the majority). A promising post-op CT scan showed that most of the tumour(s) had been removed, buying us time for me to recover properly from surgery before embarking on the chemo.

A haematologist, Dr Catherine Lowndes, came and explained what she knew from initial histology report on the tumour removed. Not all the details were in and a bone marrow biopsy would need to be taken from my hip to make see if any Lymphoma was in there too. More news would be available on the following Monday 13^th when I came in as an outpatient for that biopsy.

A lot to take in for someone who only a handful of days previously had been happily gadding about walking the dog and doing ‘normal’ things. Turns everything on its head somewhat  - phrases like “life’s too short” and “you never know what’s around the corner” suddenly become more poignant. True, being run over by a bus is probably a quicker and decisive way to go but having your life expectancy cut short from a good 20 years to perhaps a few months is still a bit of a concern and quite a lot to taken in when you’re feeling groggy anyway.

I have seen too many good friends die of cancer in one form or another – Dave Symes from bowel cancer, niece Vikki’s lovely husband Chris who suffered terribly before he gave in to a horrible brain tumour only a matter of two years ago.

But funnily enough, there suddenly come out of the woodwork cries of “I’ve had Lymphoma, got over it, haven’t looked back”. All very encouraging.

Home, Sweet Home

Highlights of the days leading up to going home on Wednesday 8^th October, a week and a day after surgery:

1. First fart (bliss)

2. First proper bowel movement (which then continued, making up for lost time)

3. Beating the physiotherapists to it by disappearing on a long walk when they came to get me out of bed to ‘start moving’

A 650 step exercise yard at RHCH Winchester - forever thwarting the physios...

4. Smuggling in a missing lightbulb for my anglepoise overhead lamp, only for it to drop out at 5am one morning, smashing into a thousand pieces

5. The nursing staff (except for one po-faced cleaner) who all wore smiles and couldn’t have been nicer

6. All my long suffering visitors, especially Sally who was trying to juggle her job with visiting me, being a one-woman media centre and look after our boisterous two year old retriever, Rosie

7. My first bowl of Rice Krispies

8. Facebook, twitter, texts and emails – I never realised so many people know me – or for that matter care that much about me – but they sent me messages and words of encouragement in their droves and I am so grateful for that power of collective thought. Definitely restores your faith in human nature!

Sent by Ria Edmenson, bless her, on facebook.

Lowlights not so many at all but vomiting up vile green bile like something out of The Exorcist and then the nurses attempting to insert a nasal-gastric tube down my nose into my stomach have to come pretty high up there. Call me a wimp, but having a tube inserted like that simply made me gag, vomit, choke, convulse, cry and panic beyond imagination. They tried twice and gave up. I just sat there and sobbed like a baby afterwards.

On Tuesday 7^th they told me that I would probably be going home the next day and sure enough I did. By 4pm on Thursday I was tucked up in my own comfy chair with a log fire, home made soup from a neighbour, Rosie bouncing around and wanting attention and a feeling of peace and tranquility.

Little did I know just how short lived that tranquility was to last...

Chapter 1 - From normality to abnormality in one move

An Ill Bloke’s Blog - by David Cradduck

The phrase ‘An Ill Bloke’s Blog’ started as a facebook joke as in “I don’t want this to turn into an ill bloke’s blog”. Who on earth wants to read the gory details about another person’s serious illness? I remember some years ago the journalist John Diamond writing every week a magazine article on his declining health and eventual death from throat cancer. At the time I was filled with a mixture of revulsion, horror and fascination.

Someone suggested that I should do the same and even if no-one but me ever reads it I guess it will be extremely cathartic. A problem shared…

From normality to abnormality

We all have ailments from time to time; in the past twelve months I have had a lower back pain issue which was very painful and a large molar extracted which was equally so. I've had gout, hypertension, occasional headaches and self induced hangovers. But having something happen like has just happened to me in such an alarmingly short space of time is a different thing altogether.

Caravanning at 3 Cliffs Bay, Gower Penninsula, Aug 2014

Back in May, Sally and I invested in a 10-year old caravan, well-equipped and big enough for us two and Rosie the Retriever. The plan went well – a initial week long trip to Swanage and a longer, three stop tour of the Gower in August. True we had a few teething problems with the caravan: a stuck gas regulator, various bits and pieces not working, blown fuse etc. but otherwise the start of a new adventure, partly reliving the many summer holidays we spent in the noughties down in Cornwall caravanning at Teneriffe Farm with the kids.

We had a lovely fortnight+ in the Gower, walking the cliffs, beaches and little lanes.

Rhosilli Beach, Gower - Happy Holidays Aug 2014

I took with me a script to learn for the forthcoming Cheriton Players’ production A Month of Sundays in which I had been cast in the lead role. Ironically I was to play an ill bloke in a nursing home and as well as learning 61 solid pages of lines (never offstage in this one) was practicing the art of walking/shuffling feebly, getting up painfully out of chairs and so on. In fact all the things I have been doing recently for real. Method acting at its extreme.

I would wake earlier in the caravan than Sally, walk the dog, then take myself back to bed and spend an hour on lines.

All those lines learnt - for nothing!

It was during that hour that I first started noticing a slightly distended tummy, and a bit of a dull ache; nothing to worry about but it gradually worsened so that once I got home and it was starting to wake me up at night with more than a little discomfort I took myself off to the local GP.

She prodded and felt ‘something firm’ lower right bowel and fast tracked me for an appointment with Mr Miles of the ColoRectal Unit at RHCH, Winchester for a fortnight later, Tuesday 30^th September. Meanwhile it became worse, very uncomfortable bloated feeling with erratic bowel movements and stomach cramps, especially at night. A blood test showed no abnormalities, no anaemia and normal readings throughout. I went back twice more after that initial visit, as it was getting worse but was prescribed painkillers only.

Then on Sunday night, 28^th September, life changed forever; I was in agony, short of breath, distended/bloated abdomen and it was clear that the system was blocked. Sally drove me to A&E on the Monday morning at 7.30am and by lunchtime I was admitted to Kemp Welch ward pending surgery. Nil by mouth from my delicious Sunday night supper until about 6 days later as it turned out.

To surgery – and beyond!

Mr Miles came and saw me on the Monday afternoon to explain what they intended to do – a laparotomy to remove whatever the blockage was that was showing up on X-rays and clearly on CT scans. An interesting man, very professional, almost the caricature of a senior surgical consultant but obviously with an awesome reputation for being a ‘safe pair of hands’. He guessed, quite rightly, that it was going to be a Lymphoma, a tumour generated by a cancer which attacks the lymph system and which can pop up anywhere in that system from neck to groin, armpits and kidneys.

There didn’t seem much point in reading up at this stage, to be honest; within 48 hours I would know for sure and besides, I didn’t really care very much, having been put on painkillers, including morphine that made me lose the will to read, listen to music or anything requiring more than the attention span of a gnat.

I was wheeled down to theatre on Tuesday afternoon, ironically by an old neighbour from Cheriton, Doug Smith, who retired from the hospital maintenance department and now enjoys part-time work as a porter. Another coincidence was that Caroline Fairley (the anaesthetist who brought our triplets Lizzie, Zoe and Tom into this world on 29^th November 1990 at Mayday Hospital near Croydon) was also on duty that day; it transpired that she finished off my anaesthetic and took me to the recovery room when I was waking up.

Coming round from 'me op' 30/9/14

Of course I knew nothing about 'me op' – it lasted well over three hours and had Sally and family concerned for hours of ‘no news’. I came round about 9pm, with two sensations – desperate for a wee and a drink. Allowed neither of course – (1) catheter and (b) just not allowed.

I was transferred to recovery and then onto the ICU ward overnight before being taken back to Kemp Welch and relative peace.