Saturday, 10 May 2014

Treading water

It feels a bit like we've been treading water this week, waiting for things to happen...

Four weeks after finishing the VanSel early phase drug trail, Steve is still not fully recovered from the side effects of treatment...or perhaps we should call them after effects?  

Although his facial hair has started growing again (back to daily shaves!) the hair on his head is now falling out more noticeably.  Hair loss wasn't listed as a side effect of treatment, so the trials team might be a bit surprised when we tell them what's happened at the post-trial check up next week.

Tiredness continues to be a problem.  Steve still doesn't feel confident enough to go out for a whole day, so sadly we had to decline an invitation to join friends on a day trip to the RHS garden, Wisley.  However, he did manage an afternoon out with our friends Jonathan and Sally on Bank Holiday Monday, visiting the gardens at Turn End in Haddenham, which were open to the public under the National Gardens Scheme.  Such a welcome change of scenery after spending so much time in the house or in hospital.

Turn End, Haddenham

The other highlight of the week was marking our daughter's birthday, albeit quietly at home.  When Steve was diagnosed, I wondered whether he would be able to celebrate her 21st birthday.  He did and it has been a great delight to be around for four more birthdays since then!

The rest of the week has been low key.  I've had my head down preparing for a work-related trip to Guernsey.  Progress the garden makeover project has been negligible as we are still waiting for quotes from the contractors who viewed the site last week and for another contractor to come and look this week.  He eventually arrived a day late due to an unexpected domestic crisis, but doesn't have a slot in his programme until the end of July.  The new fencing which was due to be delivered yesterday didn't arrive due to a mix up between the supplier and the delivery people.  Dreams of having a lovely garden in time to enjoy summer are fading rapidly....

In spite of all this treading water, May seems to be going by rapidly.  Fellow blogger Amanda was talking about time being elastic - how right she is...We feel unable to make commitments more than three months in advance, never knowing from scan to scan when the meso is going to flare up, yet here we are getting excited about a garden makeover which will take a lot longer to come to fruition!

Although Amanda's Ray is doing well, many of our other meso warrior friends  are going through, or about to start or re-start chemo or Phase 1 clinical trials.  

Thinking of you all, as always x

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