Mary is my MacMillan clinical nurse specialist in palliative care. Thats quite a mouthful isnt it? Basically it means she is my named nurse and first point of contact as far as treatment problems or concerns, especially in relation to pain relief. But she is also there for the family, to provide support and answer any questions they have. Which is nice to know because Im sure Martin has a lot of questions he doesnt want to ask me, but would be willing to discuss with her.
The first thing she said was that considering all I have been through in the past 16 months I look incredibly well - which is true - and has been commented on by many people. Apart from when I was going through IL2, when I looked truly dreadful, I do look well. Healthy even. And as Im always so upbeat, happy and positive it can be difficult to appreciate I have a terminal illness.
But looking good or not the fact remains I do have a terminal illness and one of the reasons Mary came to see me was to discuss our local hospice - St Marys. I know its a wonderful place and they do fantastic work there but I really dont feel it is for me - and I told her. She was lovely and didnt try to push the idea to me, but simply asked me to keep all options open at this point, and maybe go for a visit to the hospice and see what its like. Which is very sensible advice I decided. Its not very realistic making decisions now, whilst Im well and not in very much pain, but things change and I have to accept that. Maybe one day I will not only need, but want the hospice.
Im almost at the end of my break from Sutent, which is a shame because Im enjoying being able to eat or drink anything without a sore mouth or feeling queasy. I see Dr P tomorrow for a check up and to get my next prescription. The lumps under my arm seem to swell up and then go down on and off for no apparent reason. When swollen, like this morning, they can be very sore and tender. It will be interesting to see what his opinion is of this.
The hairs on my arms and legs have at last started to grow back - but they are fair, very fair actually - Im turning into a platinum blonde ! Change of hair colour is a known side effect of Sutent so Ive got my fingers crossed it affects the hair on my head too - for once in my life I will be a completely natural blonde and not and 'enhanced' one !
7 comments:
Morning Jane from a nice sunny Wiltshire. It is still a bit on the cold side but Dee my wee dog is sitting just inside the door in the sun so he is enjoying it !!
I have a busy day ahead with visitors !! So pleased that you saw Mary..it is good to have someone you can call on whenever you feel the need. The hospice movemenet has made such a difference to pallative care. When I lived in Bath I drove for the Dorothy House Hospice..that meant that once a week I drove and collected a client/friend as most became to take them for day care..more like a day club actually... the fun they seemed to have.... My very favourite Jimmy and I had such great fun on our drives to and from as it used to take about an hour each way.. I am still in touch with Hilda his wife some 16 years later...Keeping you in my prayers. Love Sybil xx
Hi Jane. I hope you didn't mind the email I sent you. I wanted to throw the pc out the window in frustration but decided to search Instead. I think Mary will be a great support to you all. I had rather disasterous consequences on several occassions when I tried to go blonde! lol. The result: Ginger, Yellow, Green! lol. I am so dark In colour, I actually resemble a gorilla If I don't tackle those legs!! lol so I wouldn't mind some real blonde ones. You are always In my thoughts Jane and I constantly find myself praying for a miracle for you. Love Pam xx
Yet another positive entry from you ,Im pleased you met Mary ,it might be nice to visit the hospice ,you can still keep your options open ,..with my love Jan xx
Hi there, so pleased you have met Mary and that she is there for not just you but for your family too. I really could have done with someone to talk to when my sister was so ill, we didn't even have that at the end. I know her children would really have benefitted from it, especially the younger ones. Hope your check up goes well tomorrow. Hugs, Tells x
Mary seems just the ticket, and it's good not only for but for the rest of the family to able to ask questions and get honest answers. glad your hair's growing, and a Patinum Blond at that!. The fight continues but your giving it everything you've got, which to be honest is going some!, your not letting it beat your spirit.
Good luck with the new dose of Stutent.
Take care
Yasmin
xx
Hello Jane,
Pleased to hear you have met Mary. My mother did not her MacMillan Nurse until two weeks before her death, which was a shame as she was so helpful and did so much for her in that short time. She was also very supportive of me and my needs during that time and after Mum's death.
You are so brave continuing with Stutent, and suffereing the awful side effects, buying more time to be with your loving family - you have my admiration and respect.
Much love
Jaynee X
glad mary is there for you.and martin jane. i find my MS nurse a great help. they have all the info at their fingertips. the macmillan nurses do a wonderful job,and the hospice is there if needed. you keep on fighting love,and good luck with the next course. theres a mouthwash called cordysyl, its great for ulcers. if you allowed to take it of course,though i cant see why you shouldnt. i get awful ones due to meds i am on and it helps. tastes vile but works. you take care jane,always in my prayers mort xxx
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