Today a big shopping day is planned as Colin and I aim to pack the motorhome and head off for Saffron Walden. Ok its not the hub of designer labels but you would be suprised at some of the hidden delights there. I especially love visiting Wurrl a small independent shop selling fair trade, vintage local and recycled clothes and accessories.
Yesterday I made a little error with my medication regime and found out that I am back on the steroids after all! So there will be no stopping me now and I will probably offer to join PULP! The Dexy Midnight Runners ( I do so like my new name for them) give me so much energy but hardly any sleep so my body will need to catch up with my brain sometime. Oh I hope that doesn’t mean my body will be a saggy heap with a talking head on top?
I am not an advocate of drugs having seen so many young people succumb to their effects with psychotic symptoms on the psychiatric wards, but I can sort of feel the attraction rock stars may have for the extra boost they provide.
Yesterday I had another injection (Bortezomib) in my stomach. It’s not too bad really. This is one of the two chemo drugs I am receiving , the other is Doxorubicin, which is given through an intravenous infusion. Although I was very anxious about receiving chemo, for me , it has not proved painful and the side effects have been minimal. The steroids (Dexamethasone) I take orally on some of the days. I will have a cycle of these drugs which will be repeated 4-6 times. I am on a phase 11 drug trial called PADIMAC
So the routine is:
Week one – x4 days on chemo infusion, chemo injections and steroids
Week two – x2 days chemo injections and steroids
Week three – steroids and consultation review
Then we start again, without the steroids I think.
Unfortunately Multiple Myeloma is currently incurable and almost ( I do like the word almost!) all patients will relapse at some point following this treatment. Depending on how well these high doses of chemo work it is hoped it would be followed by a period of remission. The times scales for this are uncertain but I have heard of people being in remission for many years!
Following the 4-6 weeks programme I will be given some injections to enable my body to grow some stem cells that will be harvested and put on ice for when required.
When (no if, I do like to be optimistic) I need these stem cells I will have to stay in hospital, for about 3-4 weeks some of which time I will spend in isolation in order to ensure, as much as possible, a free from infection environment.
I know it all sounds pretty gruelling but so far it’s better than I expected. I am not niave enough to know that I haven’t got some tougher times ahead but the bottom line is I have no control over this matter and have to my put my utmost faith into the medical profession and the universe.
I am not sure about God, what, or who he or she is, but I do believe there is something bigger than our human body and experiences. And I do believe that the mind/brain is a powerful organ with untapped sources and an indisputable effect on physiology.
I know I have already said it, but, you reading and commenting occasionally ( just so I know you are still there!) does help enormously, so Thank You once-again and I will try to keep this blog as informative, but as witty and positive as possible.
Enjoy the moment, today is all that matters as yesterday has already past and tomorrow will very soon become today!