Well the weather has been fairly dreich (a lovely Scottish saying which sums it up exactly). But we have been getting out and about and making the most of it although damp, cold wind is not good for me.
We have up to London to visit (not the Queen) but my consultant at Bart’s Hospital. He was very positive and was pleased with my last scan results although they were a few months ago now. We talked of the future and ‘what next’ in terms of treatment. He said there was a new trial starting at Barts in January for ‘people like myself’ but he was not at liberty to say much more at the mo as the trial was awaiting the final OK from ethical organisations. But ‘watch this space’ was the message. I did say after my last trial I would not do any more – it is a big leap of faith and in many ways I feel gives false hope but I have to keep an open mind until I know more. We talked about more chemo as and when and he didn’t think that would be a problem. Again I have said no more chemo. I have had 3 regimes now and my poor old body has taken a beating. My hearing is going, my teeth are going, my sight is deteriorating, my muscles are wasting and that is from what I can see. I do wonder sometimes if 5 months of hell to maybe get 6 good months is a good enough trade off. But when I am told this disease is ‘life limiting’ – (we don’t say ‘terminal’ any more) and when I see my beautiful family I know I will grasp at whatever is on offer.
Following Alan’s quizzing of our GP with regard to the Gold Standard Framework we were referred to our local hospice who deal with palliative care. I have no concerns or anxieties about visiting them and have been to several of their sessions already – breathlessness management, reflexology, relaxation etc. We had a long discussion with the consultant there who explained the Quality and outcomes Framework under which they and most GP surgeries in this area work to. Quite an eye opener. As a result of this meeting I have been referred for counselling and have my first session this week. Sometimes having this dark shadow hanging over you really screws up your life!
On a more positive note we have just returned from a few days in Rye. Although the weather was miserable we did manage some shopping. We made visits to Biddenden and Chaple Down vineyards and a couple of very good restaurants. We can highly recommend the Landgate Bistro where I indulged in quails eggs, goose ham, mixed mushrooms, lemon sole fillets, chocolate brownie with cherries in kirsch and pistachio ice cream and Alan was tempted with quails eggs, goose ham, chilli fishcakes New Romney lamb and British cheeses – yes I am trying to maintain my weight, not sure what is happening to Alan’s!!
|Rye Lodge Hotel where we stayed|
|The Land Gate|
|view from hotel|
We returned home via Tunbridge Wells for a quick visit to Ethan – my goodness he is growing up so quickly and his vocabulary is amazing, I have always thought he took after his paternal grandmother.
So we are into December and the countdown has started here. The Canadians arrive on Sunday 15th cannot tell you how excited we are getting. A year since we have seen our beautiful granddaughter and daughter-in-law. We saw Tim on his flying visit in September. Alan keeps on about putting the tree up but I am saying it’s too early. Perhaps next weekend. Looking forward to catching up with family and friends over the festive season.
We had another addition to the Robson family last week – so I now have another 1st cousin twice removed! Welcome to world little Isla Rose and congratulations to all.
Sad times continue in the Meso community. Since my last blog John and Ron have both passed away. My sincere condolences to their families. RIP my warrior friends.
Jan is still struggling with both the disease and side effects of chemo, Mavis is battling on and now awaiting scan results, Lou had positive news on her last scan, the chemo seems to be doing its stuff for her. Steve is doing well and still gadding about. Perhaps 2014 will be the year for a cure.