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.