Getting On...

As usual I’ll start with the apology for not writing sooner.

I left you with tales of facemasks, radiotherapy, hair loss and fatigue. Perhaps I felt it a little insensitive to bang on about the same stuff for weeks on end, so I didn’t. It has always been difficult to evaluate whether I’m whinging…or informing.

So how have I been? The photos show that all is not doom and gloom and I include a few for your amusement, including a video of a Mock-Morris dance for a fancy dress laugh! I spent ages on YouTube learning how to do basic steps let alone stripping the audio to edit the accordion music! Idle hands and all that! Don’t even ask how long it took to learn how to tie a dhoti Ghandi style!

http://www.youtube.com/watch?v=xta3yrkQ10o

I have to admit however that there have been times when the energy levels have hit rock bottom and I was then actually classified as chronically fatigued, having then to carefully regulate my bullish physical output. Never mind the cancer and its implications, I was getting exhausted walking for just ten minutes for Gods sake! Remember I was running 10k races and cycling eight weeks earlier in July! Such things serve to remind you that you are sick, damn it. When the fatigue set in I could literally get up mid afternoon and sometimes then go back to bed for a normal night time, exhausted and ridiculously frustrated. It was the combination of drugs and an eventual reaction to the head radiotherapy. They keep telling me that it was a one-off procedure regardless of the outcome, so I guess they whacked up the dial because of it. However, of all the drugs I must endure the effects of the steroids can be most acute. Your sleep patterns are destroyed, such that you can be getting up all night long because you can’t sleep! They are prescribed reluctantly because of their potency but I suppose despite my moaning they are essentially to keep me from falling over! I resent their necessity but welcome the bigger picture they allow in keeping me vertical.

Up until Christmas I guess I was a little poorly and had various medical investigations for reasons other than the obvious cancer. Which, by the way is essentially in an overall stable condition. My Oncologist is happy anyway. I’ve had cameras inserted where cameras should never go (I have copies of the photos of course). I’ve even spent a couple of totally unnecessary nights in a geriatric ward listening to the effects of 24 hour dementia and associated bodily functions whilst trying to mask the nasal offences with my deodorant on every conceivable piece of clothing and skin area. The results were sadly negligible I’m afraid to say and I was out of the ward like a scalded cat when given the opportunity! At least I had the toilet to myself as a result of being the only one conscious enough to know there was one! The toilet, refurbished and opened that day did have its own problems with a sixty second lighting timer which required the manic waving of both arms to trigger the sensor to avoid embarrassment when it invariably went dark…work it out! Ah, yet another insight into a previously unknown world. “ Are you sure you want the curtains shut all the time darling?...Oh Yes…YES!”

The upshot of the visit? Medically inconclusive but God owes me two days!

That smell is still with me now. Bless them, not their fault…but wow!

As Christmas approached I began to recover, having lost over two stone in weight in the previous two months…just the drugs. A wobbly time Christmas day and again New Years day did concern me but did nothing to stop me cooking the full monty as is traditional. Stubborn?...moi?

Anyhow, today (12 January 2010) I’m now raring to go despite a lack of sleep. I’ve been doing all the silly things that require snow of course in the last week and the energy levels are good. So with no exception by 9.30 this morning I have already cleaned the kitchen and completely blitzed the oven before getting on with this blog. The energy levels are cyclic so I am determined to use them when they are up.

Today was going to be a “different” sort of day as a result of my recent, pre- Christmas health limitations. Let me share it with you.

Admittedly over the last couple of months I have been a trifle run down. I could neither stomach food or drink because of the inevitable vomiting, and the weight did come off, although disappointingly not from the waistline. To that end I had the Royal Marsden point me towards the Macmillan Nurses. Hospice care rings very loud bells in my head (perhaps that was the tumours rattling around!)

The problem I have is the continuity of my health professionals, who then have very little insight into the individuals psyche...me! They see drugs and effects and manage accordingly. Although paying lip service to the individual there is little time to understand the patient. I am fortunate and have been able to “cope” with the emotional trauma of my condition with little thought. A stoic attitude and bloody mindedness is essential to continue, something I am very, very grateful for. In effect I get on with the new life I have. I am however fast noticing that I am becoming just the cancer guy Hospital Number 532189. Seeing my fatigue, the Doctor suggested this solution:

A few days after Christmas I had two calls from my local Hospice where the Macmillan nurses are based. The first was a nurse outlining her home visits and telephone availability if I have dietary, drug or personal care problems. It is excellent to have available, but as we discussed not required at the moment. The second call invited Michelle and I to the local Hospice for a look-see, in fact it was their Day Care Centre, which we accepted with a degree of apprehension. Now at this time I was recovering my energy and eating for England…I was feeling pretty much my normal self and apart from the bald badge of office for the cancer club having removed the hat, showed little signs of need.

On the agreed day, on approaching the door I noticed an empty wine box…good start I’m thinking…result! We were greeted by the staff, all of which were a comfortable age and naturally very pleasant, and lead into the conservatory for a cup of tea. The centre is an immaculately converted large house by the seafront in Southend. In fact the last time I passed it I was running the Southend 10k last year! We sat there in high backed winged chairs and talked about me and I was politely invited to join them despite my inability to hit any relevant criteria for ill health or emotional support. In fact I was so well that I volunteered to help them rather than be a patient! As part of being shown around we had noticed the patients were quite elderly and the facilities did reflect this from the high-backed chairs to the craft sessions making Christmas cards with sticky stars and bits of coloured paper and the communal eating with supervision. No doubt there would be assistance to spoon feed me a meal if I needed help. Don’t get me wrong in the slightest please, I loved the place and what it does, ironically having supported its Charitable status for my entire life being the best known local charity. Worthy and perfect facilities and care for those who need that level of attention but can you see me sitting there, making cards and dozing away my time rather than going out for a bike ride or DIY? Go on, you all know me…imagine it!!!If I ever need it, it’s a wonderful facility but for the foreseeable future…I’ll take a rain cheque thanks.

This morning would have been my first visit, having first being picked up by a volunteer in his Nissan Micra!

Thanks to all of you for letting me know that you read this. I have a pile of personal emails to write sitting on the computer.

May I wish you all a very belated Happy and Prosperous New Year.

I’m sure as hell going to have one. What’s your excuse for not?

Richard