Thursday, 16 July 2009

One month later....Cycle 1, Day 10

It's one calendar month to the day since Steve was diagnosed with mesothelioma and our lives took a different and unexpected direction. In some ways, it feels like a lot longer, in other ways, time seems to have flown by - we are amazed at all the things that have happened since 16 June:

  • holiday cancelled and insurance claim submitted
  • family and friends told of diagnosis and blog started
  • desk cleared at work and arrangements put in place for the rest of the summer
  • 14 hospital appointments, including visits to the chest clinic, oncology clinic, screening for the drug trial, CT scan, X-Ray, one radiotherapy planning session, three radiotherapy treatment sessions and three chemo sessions to a trip to the doctor for the pneumococcal jab
  • Industrial Injuries Disablement Benefit and Compensation applied for and awarded; Disabled Living Allowance application in the pipeline...
  • taken part in medical research: TIME Trial (chest drain size and pain relief); Cancer Research UK Study of Occupation and Cancer; Velcade Phase II Drug Trial and the related genetics sub-study
  • enjoyed a retirement tea party, a 60th birthday party, two garden lunches and an indoor lunch with various groups of friends; entertained visitors at home and visited family in Bristol
  • survived a heat wave, enjoyed Wimbledon, rugby, cricket and the Tour de France, and finally planted the lettuce seeds to provide fresh salad and the window boxes for a fresh outlook!
  • been overwhelmed and greatly touched by the all good wishes, and messages of love and support from family, friends, neighbours and colleagues
It's also been a time of contrasts and contradictions:

Waiting to hear whether Steve was on the Velcade trial seemed to take forever, as did setting up the radiotherapy and chemotherapy sessions, then suddenly it was almost non-stop action, with hardly a day to catch breath between hospital visits.

Feeling almost normal, whilst being assessed as 100% disabled seemed unreal, as did the fact that everyday life carried on, regardless of the life shattering news that Steve has an incurable cancer.

Wanting to start treatment as soon as possible but fearing the side effects pulled us in different directions.

On the one hand, our lives for the next five months are planned almost exclusively around a 21 day chemo cycle. On the other hand, we take each day at a time, depending on what needs to be done and how Steve is feeling.

We think about the future but concentrate on making the most of the here and now. Our perspective on life as changed and priorities reassessed. The emotions are still raw, but we have tried really hard to be positive in our outlook...and most of the time we succeed.

By the time I write the monthly review on 16 August, it will almost be the end of Steve's second cycle of chemo - a good time to stand back and reassess how things are going two months after diagnosis.

In the meantime, although a few of our friends hate any sort of communication via computers, many others have found it helpful to read this blog to keep up-to-date with news and progress. Apologies if it sounds like stream of consciousness stuff at times (it is - that's my therapy!) and for any typos and bad grammar. I'll try to post some more photos from time to time to improve the presentation.

Please continue to keep in touch with us - knowing that you are all out there sending positive thoughts really does help!

Thank you, everyone.

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