Awww, Dear Dot, bless you, I will take care, I hate crowds anyway! Have booked seats on the trains going north as I know which trains I'll be getting (have to change at Stoke) , not too sure about the homeward trek yet though.
Hmmmmmm, well, am back home, today's appointment in many ways was to tell us what we already knew, but we spent about an hour in consultation, and then got take to see the ward where Caz would be if and when a transplant is possible. (that actually looks quite tasteful for an NHS hospital, the rooms are bright and airy and clean, with TV (not pay to view, thank goodness) and phones too.) There was a comfy looking recliner chair as well as bed in the room we were shown, it was awaiting cleaning, and if so, it actually looked VERY clean.
All depends on how she is doing, she will be having a scan after this latest course. If all is still ok, they will if she agrees, pursue the donor list trying, they have already begun. It will mean assuming she gets through the first year after transplant then her prospects are good. A whole year!!!!! argh!
Mind you, he spelt out that she is unusual, as Hodgkin's patients who have 'failed their own transplant do not normally survive over 4 years. She is already over into year 5 of that. But he did also say that because she is young, and fit as well as having slow disease progression then her prospects might be good anyway. But then he pointed out that the new bone marrow in itself could kill her, she would be facing months of anti-rejection drugs, months of twice weekly then weekly hospital visits, all in all it sounds tough but her best option since nothing else has worked properly yet. However bad all this sounds, she knows in her heart of hearts it is the best way forward.
I asked on a practical note whether I would be allowed and able to stay close by, as even her home is a good 40 minutes to an hour's drive away, depending on the time of day. The answer seemed positive that they would be able to find me somewhere, whether on hospital premises or nearby, it seems possible. As her main carer now I am myself facing anything up to a year myself being on hand and able to drop[ everything to help out. Certainly I would need to be there while she's an in patient, around a month they say.
so although it all sounds a big decision, since she now has only one possible treatment in reserve, it seems her mind needs to be made up for it. I think she's already got her head around much of it.
People need people and friends need friends And we all need love for a full life depends Not on vast riches or great acclaim, Not on success or on worldy fame, But just in knowing that someone cares And holds us close in their thoughts and prayers- For only the knowledge that we're understood Makes everyday living feel wonderfully good, And we rob ourselves of life's greatest need When we "lock up our hearts" and fail to heed The outstretched hand reaching to find A kindred spirit whose heart and mind Are lonely and longing to somehow share Our joys and sorrows and to make us aware That life's completeness and richness depends On the things we share with our loved ones and friends.
