Sunday, 25 November 2012

One Step Forward, Two Steps back

Sunday 25th
I have just returned home from a short weekend in Langdale to attend an FRCC Committee meeting. There has been so much rain this year that the hillsides are hemorrhaging water at an incredible rate. It was good to catch up with old club friends and to meet a few members that I didn't know.  The weather was not good and the high tops had a dusting of snow so not wanting to hold anyone up on a big walk I walked along Mickleden Beck alone, my legs feeling like lead weights. I enjoyed strolling along the riverside at my own pace, taking time out for drinks and snacks.
One of the problems being with so many people in the same place is finding the opportunity and privacy to tend to Bob's pouch including cleaning and changing so I was glad to be heading back home this morning for the privacy and comforts of our own home.
Stones in Mickleden Beck
Just to update folks on my recovery and reversal situation, I seem to have taken a few backward steps since returning back to work 2 weeks ago. I feel more lethargic  tired and the nerve endings in my fingers don't seem to be improving like they were when I was off. I just wish that I could have had a bit more time recovering prior to going back however everyone comments that I look so well that no one would ever know the trauma and treatment that I had been through.
I have had a letter from NGH noting that my Gastrofin test was normal and I have a date of 18th of December for a Pre Operative assessment. So will I get my Op before the new year? Who knows.

Sunday, 11 November 2012

Evidence of Chemo Past

Sunday 11th November
We have just come back from a 5 day break at Hunstanton, staying in the Golden lion Hotel, where we had plenty of fresh air and mile after mile of walking beside the sea. I just love the seaside even when it is cool and breezy, which it was.

It has been 4 weeks to the day since my last 5FU canister finished and although I have been getting better by the day for the first couple of weeks progress has since slowed down considerably. The nerve issues that I have (Peripheral Neuropathy) relating to finger numbness, and taste still remain and any recent improvement is barely noticeable. 
Since I have been discharged from WPH I have had to do a bit of research myself to look into my most recent side effects. It looks like I have developed a rare case Lhermitte's Phenomenon (an electric-shock sensation shooting down my spine to my feet with neck flexion) this seems to be a  result of the Oxaliplatin infusions. Further reading suggests that symptoms may take up to 9 months to resolve.

My finger nails are showing a record of the chemotherapy treatment sessions just like the rings on a tree stump. Obviously this is due to the nail bed cell destruction after each cytotoxic hit.

I have had no news or results from my tests over a week ago so it is not likely that I will admitted next week for a reversal so even though I'm not quite ready I have had to make a decision to return back to work in order to bank some more sick time which will be needed later. This must be a typical scenario for many cancer sufferers who have to provide for the family whilst recovering from major operations or intensive radio or chemotherapy.

Tuesday AM Update 04.00
I arrived home yesterday from work totally whacked so I was in bed by 8.30 pm waking again at 01.30. Sleep eluded me for the rest of the night with my mind on overdrive from the previous day at work. Add  to this tending to Bob's pouch and snoring noises emanating from somewhere in the room, it is hardly surprising that I failed to drop back off. Even the relaxation techniques learnt weeks ago did not work simply because I could not concentrate for long enough on the techniques without flashbacks to the overwhelming amount of problems that were awaiting to  be uncovered upon my return to work. It is difficult to sleep when confrontations are inevitable since the scenarios conjured up stress me even more. It is just a vicious circle so what else is there to do but get up and try to put some structure to resolving these issues. Surprisingly I have known more stressful and upsetting times in my life but not for such an extended period of time.

Friday, 2 November 2012

Violated Again

I attended the Northern General Hospital today for a water soluble contrast enema and X Ray (Gastrografin) to check out my internal plumbing and surgical  joints (Anastomosis) for leaks. I wasn't looking forward to it however it is the next stage in the route to normality. I cannot say that I am getting used to being violated by having things pushed up arse but if it must be done then I much prefer it to be a woman rather than a bloke performing the task. Laying on my side on the X Ray bed, knees up I prepared for the tube insertion. "Please try to relax" as my backside twitched like a rabbit's nose. The sensation of the liquid being pumped in was uncomfortable and slightly painful in between body rotations to capture all angles of my large colon. Everything looked fine to me as I studied the screen, however the pipework appeared pretty straight compared to diagrams that I have seen. I was Just at bursting point when she drained the fluid out. Since there was still quite a lot of residual fluid left in my colon It was good to know that I could control myself as I gowned back up and visited the loo to relieve most of what was remaining. The consultant radiologist warned me that the fluid did have properties that would make me want to visit the toilet frequently throughout the day .
Back at home I have had what feels like a stomach upset which I feel will not go away until I'm fully empty.
So it is a case waiting for an appointment to see the consultant for the results and hopefully a date for a reversal.

Thursday, 1 November 2012

Stanage Pole Dancing

I have had a fairly active week and I'm feeling better by the day although I still have not quite got over the finger numbness plus about a week ago I developed a strange nerve related side effect where if I move my head quickly I feel a shock type sensation in my feet. I still tire quickly and occasionally feel sick.
Stanage Edge

Sunday I went to support my niece Emily in the Worksop Half Marathon as well as watch my brother's grandson (Kieran) in the Fun Run. Both did fantastically well completing their races in style. I was so envious and wished I could have been a part of it again.

Monday - Wednesday In a drive to get fitter both Sue and I went for hour long "power walks" either at Clumber Park or beside the Chesterfield Canal.
Graham Pole Dancing - Stanage Pole

Thursday - I went out with Graham to the Peak, Starting at Stanage Edge walking to Stanage Pole, Redmires Reservoir , Over the Halam Moors to the Head Stone, crossing the A57 and walking around the perimeter of Furnace Hill, Moscar Lodge and back over Stanage Edge. All in All 20km. I was totally knackered and It was a good job  I had my walking poles. I could have done with a shorter walk however I wasn't going to wimp out on Graham's original planned route. I could imagine the banter on the quiz night "We had to cut it short cos Dale was tired" " - No Way so I said "If we are out for a walk then we are out for a walk old lad" " Let's Crack On"
Graham climbing onto the Head Stone