A walk in the park

Just got back from a walk around Knole park and although I am aching, back mostly, its in a good way. I went further than our usual family route and although it was at a snail's pace I still managed to work up a slight sweat, I haven't experienced that through physical effort since before my operation. This was 'try out' to see how I coped with a distance walk (only a couple of miles), as this is the only exercise I can comfortably do at the moment I intend to get out more regularly and push the distance a bit.

I didn't  get to see my Surgeon this week, his clinic was cancelled due to an emergency operation. However, I did receive a letter from him letting me know that he has arranged for me to have a 'contrast enema' to check the site of  the operation. This journey has introduced me to a whole new field of experiences as well as vocabulary, I feel fortunate to have had this opportunity.

I have also got an appointment (4 May) to have CVAD pre assessment, essentially a survey to see where best to site a PICC (peripherally inserted central catheter) or central line for the infused chemotherapy. I am still nervous about having chemotherapy but I am resigned to it and take heart from the fact that I can at least see through it to the end of treatment. Not very brave I know. I am sure that, once underway, I will overcome my nerves. 

Not quite out of the woods

The visit to see the the Oncologist held a 'surprise' last week. I have completely underestimated the amount of chemotherapy I will have, in truth I think I wanted to believe the original estimate of two weeks of tablets this was probably never realistic. The Consultant gave us 3 options involving 8 or 12 cycles for 24 weeks:

1. Just tablets ( Capecitabine) in 8 cycles of 2 weeks with 1 week free.
2. Tablets (as above) and infusion (Oxaliplatin) every fortnight (12 sessions) with a supporting pump over a 48 hour period.
3. Tablets and infusion every 3rd week without the pump.

This rather took the wind out of our sails and, to stretch the sailing analogy further, left us in the doldrums. I couldn't make a decision on the day and wanted to discuss it further with Stella before I did. I have an overwhelming fear of needles and their entry into my vein system so options 2 and 3 petrified me into not thinking with any clarity. By the time Monday evening had come, we had discussed the options and I realised that worrying about needles is akin to not having essential root canal work done because you're scared of the sound of the drill. I contacted the Consultant's secretary first thing Tuesday morning and went for option 3 with the addition of having a 'port' put in to my upper arm. This will allow easier ingress for the infusion and obviate potential complications with finding a vein.
 It is important to stress that this is curative treatment aimed at stopping  recurrence, I didn't have to go with the infusion but, as my Consultant says, it is the 'Gold Standard'. The only unknown for me here is how I will respond to the Oxyplatin, I only had minimal side effects from Capecitabine when I took it during my last round of 'nuclear' medicine. My Consultant assures us that this represents the end of the treatment and that I will get my life back when it's finished (can't wait!).

Interesting note: Bowel cancer is bowel cancer where ever it migrates to, it doesn't become liver or lung cancer just because it appears in these organs.

I have asked for the cycle to start asap but to avoid the the first week in June as we have booked a week away in Devon then and the whole family could do with a break. Sadly, I will have to put my date with the surf board on hold for a bit longer. But, assuming the Mayans are wrong and there will be a 2013 I will have plenty of time to 're learn' lost skills. Speaking of which I am once again playing my guitar (badly).

Brief update

My grievance against half pay was upheld in my absence which means I will remain on full pay for another two months. As I intend to return to work in some capacity by the end of May I don't think this will prove to be a problem.
I have appointments for both my Oncologist and Surgeon coming up in the next two weeks (16th Oncology, 26th Surgery). I fully expect a 'mop up' two weeks of chemotherapy as this seems to be the norm in my circumstance and will find out what the long term plan will be. The surgery meeting will be to discuss the results of the surgery I have just had and the stoma reversal. On the surgery note I received a phone call from the consultant at Frimley Park and everything seems very positive.

In other news, Stella dropped me at the barbers today and after having my hair cut I walked home, a distance much greater than my abortive 'post box' walk. I felt fine and don't appear to have suffered any ill effects. Hurrah!

Bitter Sweet Affair

Well that's the last of the injections, another milestone. I'm feeling much more comfortable and am staying up for longer periods.
I had my first ride in a car since coming back from hospital on Tuesday, we went to the doctor's surgery. I felt like I had escaped from my confinement and enjoyed this (minor) trip.
I still have a urinary infection and am on my third set of antibiotics. The problem is that I can't drink enough to flush out the infection without flushing everything through my stoma and becoming dehydrated. Like most things I have to find a balance, I have to drink enough to clear the infection but maintain good hydration to this end I am drinking re hydration drinks as well as water and juice. Our GP says that clearing the infection may take some time and involve low dose antibiotics for a long period. However, the situation is definitely improving and I generally feel better.

My niece is backpacking around the Far East at the moment and was caught up in the recent tsunami scare. Despite missing the evacuation bus from their hotel (!) her and her friend are both safe. What did we do before Facebook? Wouldn't have known anything about it I suppose.

We went to Sheila's funeral yesterday as well as being a bitter sweet affair this by far my longest trip and period without a rest to date. Bitter because it is heartbreaking to see Mum, Dad, relations and friends so upset; but also sweet, a glance around the congregation showed how broad Sheila's circle was encompassing very old as well as (relatively) new friends. For me, although sad, her mass was a celebration of her life. The wake was an opportunity to catch up with Uncle Dave who flew in from Canada for the funeral, other than going completely white haired he doesn't look a day older than the last time I saw him. There were people there that knew me and my cousins when we were toddlers, more than once I heard "Is that Mary's boy Johnny?" and would become embroiled in a conversation with someone that knew me far better than I knew them. I have to say I enjoyed it.
Sheila's funeral was a landmark goal target for me, I was determined to be fit enough to go. I'm so glad we did.

I have set two more milestones, coffee up the town with Stella (a date!) and a walk around Knole park. Slowly but surely I'm coming back.

Back from the dark side of the moon

This is the first day since my last post that I have felt I can concentrate long enough to write. The walk to the post box was  big mistake and I think was largely euphoria/morphine induced. I paid for my impudence the next day, as indeed did Stella rubbing my back and it was for hours!
Good news is I am not incontinent and had no use for the 'Tena man' pads Stella mentioned. I still seem to have the remnants of a urine infection though and am writing this waiting for a call to pick up a prescription.
Sheila's death was a hammer blow, she had been ill for some time and was a frequent hospital visitor. She and I would compare hospital experiences she had a very grounded approach to her predicament that I found both refreshing and reassuring I will miss her terribly.
I am generally moving toward recovery but it feels like a slow grind, much harder than from the original stoma operation.
As for the injections; I figure some people have to inject themselves all their lives I can handle 26, after all I only feel a little prick.