Friday, 4 September 2009

St Mary's.....Live!!

It took Mary, my Macmillan nurse, 18 months of gentle persuasion to ease me through the doors of my local Hospice, St Mary's. Not because I was scared of the place, or because I thought it was a place for the dying only - just because I wasn't ready for it then. But I am now.

I attend the Day Unit here every Friday - and what a revelation it's been. I have a ball here !! We get seriously spoilt and pampered with aromatherapy and massages, there is a hairdresser here if you want your hair cut or just washed and blow dried (Kim is really good too - she cut mine beautifully last week), there is a library with books and magazines and lovely comfy easy chairs to just sit in and relax. But best of all is meeting the other patients, who quickly become friends. I'm the youngest by years but that doesn't matter - we have a laugh and a gossip and rarely talk about our illness's. We know we are all in a similar position and that makes it easier to relax in each others company. The food is really good - its cooked here on the premises and the best 'hospital food' Ive ever had.

The Day Unit is run by a small group of nurses and some very special people - the volunteers. These ladies come most days and give their time to make us coffee and toast, serve the lunch and organize things like quizzes. And again they quickly become friends. My little group is just 10 strong, the eldest being a lady of 94. We are a bit short on the men side though with just 4 of them.

The nurses are there to help us of course and in case we have any problems with our medication or we need any help from the other services which operate from there, like the Occupational Health or Physiotherapy department. And there is always a doctor there too if we need to see one. So all in all it's a great place to be for the day and I really look forward to going.

Things are moving on the 'leg' front. My MRI scan is booked for Tuesday morning - and in the afternoon I have an appointment to get the results and hopefully find out when they can operate. And yesterday I saw Dr P. for my usual check up. Everything is ok except my Hb has dropped again, to 8.2 this time. So I'm going into hospital over the weekend to have a transfusion...or two...or three!! It needs doing because the surgeon wouldn't take me to theatre with such a low Hb. It's just a case of timing now - I need to be on a break from Sutent because it can affect the healing process. I'm on day 14 of cycle 17 right now - so the perfect time for an operation would be in about 2 and a half weeks. Fingers crossed it all works out. After the operation I'll be having radio therapy on my legs and a 6 weekly infusion of a drug called Zometa which helps to strengthen bones.

The best and most exciting piece of news Dr P. had for me is that this week he is applying for funding for Afinitor (Everolimus) for me. This new drug is the natural progression from Sutent for when that fails or doesn't work. Although Sutent still appears to be working, the tumours under my arm, on my scalp and on my ribs don't feel as if they have grown, I'm still getting a lot of pain in my knees and thighs - a side effect which seems to be here to stay and means I'm still taking MST, which I would love to be able to stop. After all I've been on Sutent for 18 months now so I think it's the right time. IF I can get funding of course.

All in all there is an awful lot going on 'Team Jane' wise right now - but all of it positive and so encouraging. I'm still being treated with the aim of fighting my disease. No one is giving up on me yet. This gives me such a tremendous boost and makes me more determined than ever because with the very best doctors and the very best treatment the NHS can provide who knows what is possible?



10 comments:

ADB said...

Hospices are marvellous places for those who may benefit from their services. And I'm very pleased you're still firmly moving forward, Jane. Keep it going.

Alexei said...

Thinking of you Jane and admiring you loads. I think you're the most positive person I ever "met". Great news on the new meds and the upcoming treatment. You go girl, I have every faith in you.

karen said...

powerful positive post once again Jane. Happy to see you are forging ahead - wouldn't have expected anything else from you. Thanks & best wishes as always,
Karen in Ottawa Canada

tinkerbell said...

I am certain Jane that those around you are greatly uplifted by your company and your wonderful positive attitude. Hope all progresses well for your forth coming op. Bless you

pam said...

Hi Jane. Great to be back here reading your journal. Must admit I backtracked and read a few of your entries & the news stories that i had missed. After using my new duvet & the cat as a hankie, I decided to quit bubbling & post a new entry. I am In awe of you jane. You are the bravest & strongest woman I know. The fight continues. Always In my closest thoughts. Love Pam.xx

mortonlake said...

pam just said it all jane,then she always does nip in first,lol.bless.im just glad you never quit,you dont do like some and say,i cant do this.you do it.hospices are wonderful places,a dear friend has just gone into one.i visited her last week,and.........this the right place?lol.its so comforting,everyone so lovely.my friend wont be coming out.but has no fear.and that is what counts.you keep on fighting,love mort xxxx

Jackie said...

Hi Jane
Good luck with the mri and ongoing plan. We'll all be thinking of you tomorrow! Hope you're feeling better after the transfusions! Sometime I'm grateful I had the polycythemia as it's taking sutent longer to lower my platelets.
Jackie

Kurly said...

good luck Jane, God Bless I will be thinking of you in my prayers and everyone else.

Shirley ( Kurly1954)

LYN said...

SORRY I HAVEN'T BEEN BY JANE...HAVEN'T FELT LIKE IT..PLAYING CATCH UP TODAY...HAPPY TO HEAR YOU LIKE THE HOSPICE!!

Yasmin said...

Hopices seem scary at first, but glad your availing yourself of this marvelous and beneficial place. I have such an dmiration for your fight that I can't really put it into words, hope you get the funding so that you can begin the new treatment.

Take care
Yasmin
xx