Sunday, 18 April 2010

Back with a blast !!

I'm so sorry. Its been weeks since my last post - Im not sure why to be honest. The fact that I'm still typing with one hand, and still in pain, could have something to do with. My latest bout of radio therapy on my right arm was rough - very rough indeed. The pain was almost unbearable and I cried with relief when it was over. That was 2 weeks ago and although the pain has lessened its still there, nagging away, making me wince and jump regularly. I'm still optimistic it will improve further soon. Very soon hopefully as having only one fully functioning limb is a real handicap !

Ive had another stay at St Mary's - primarily respite so Martin could go to France for a few days with his mates to play golf. But it coincided with yet another infection in the wound in my right leg. This is tiny now - just a small hole - but it just seems to refuse to heal. So yet more anti biotics and daily visits from the district nurses to dress it. The slow healing is probably due to Afinitor - it is a known side effect. Ive been on Afinitor for over 8 months now and the side effects have been minimal - a sore mouth and change of taste (particularly annoying in the case of chocolate !) and anaemia which means regular transfusions. As my veins have virtually disappeared by now it takes a very skilled doctor to cannulate me - and several go's. In fact I was due to go into hospital to have a Hickman line fitted last week but cancelled, with Dr P's agreement. Ive just had enough of being messed about with lately and need to be left alone. At home. I do so much better at home. And so far my Hb is fine. I'm eating better at home and sleeping better and I just FEEL better.

This week something happened which has annoyed me intensely - in fact I'm really, REALLY angry about it. On Wednesday a lovely thick expensive envelope landed on my front door mat. I recognised the embossed crest as coming from the House of Lords. The same as I had received last year when invited to 'Afternoon tea' there. Excitedly I ripped it open and sure enough it was another invitation - to the President of the James Whale Fund, Earl Howe no less, annual dinner in June. It sounded fantastic, very posh with black tie and champagne etc.

Then I read the last paragraph. Martin and I were invited for sure, but would have to pay 120 each for the privilege. 120 pounds EACH. And that was just for the meal. No travel or hotel included.

Disappointed isn't the word. I was gutted.

Then I got angry. VERY angry. Here I am, a patient who has been very poorly for past 6 months and who has worked for the JWF a lot in the past what with the film and awareness campaign, being asked for 240 pounds so me and my husband can attend the annual dinner.

Are they mad? Don't they realise just HAVING cancer is an expensive business what with car parking fees every time you visit hospital and the amount of time Martin has had to take off work lately. I bet I'm not the only patient to receive such an invite either.

My first reaction was to rip the bloody thing up but then I thought 'No - I'm going to reply and let both Lord Howe and the JWF exactly how I feel' So I'm busy composing a letter right now. I'll let you know if I receive a reply !

My legs and arm are aching quite badly now - it's taken me 2 hours to type this left handed - so I'll finish in another post in the next few days.

Thank you everyone for your good wishes and prayers - I'm still here 3 years and 4 months after diagnosis so they certainly are working (plus the fantastic work Dr P has done)

16 comments:

Jackie said...

Welcome back Jane, we all wondered where you had gone to. Sorry to hear the pain is still not fully under control but I know how plucky and determined you are and I for one wouldn't wish to be on the receiving end of your response to the 'dinner invite' !
It's really is good to hear from you again, now I for one must get back to bed and sleep.xx

Debbie Byrd said...

They ought to pay YOU to go!

Deb said...

Sooooo good to have you back and read your post!!!!! What a trooper you are and yes, I agree that the JWF should have you and Martin attend most definitely free of charge. I'd say "shame on them" indeed.
Reading your post tonight was the very best way to begin my week Jane...what an inspiration you are my dear!
Deb

karen in ottawa canada said...

so relieved to hear you back in fighting form, I'm grinning ear to ear. look forward to hearing what kind of response you get from JWF - that is a ridiculous sum they're requesting - let 'em have it Jane!
hugs and very best wishes to you & Martin & family

Jane said...

Jane it was so good to see a blog entry from you today altho your invite is an absolute disgrace. I wonder whether you've thought of writing an open letter in reply to your invite and sending copies of both invitation and your response to the media?
As always, you are in my thoughts and prayers.

ADB said...

Good to see you posting, Jane, still fighting the good fight. You'll get there yet. The invite is an absolute disgrace, and Lord Howe should hang his head in shame.

LYN said...

THERE'S MY GILR! BEEN WONDERING ABOUT YOU..I CHECK DAILY TO SEE IF YOU'VE POSTED..GLAD YOU ARE HANGING IN THERE WARRIOR GIRL!

THAT'S NOT A DINNER INVITE IT'S A SOLICITATION FOR MONEY! OH THE NERVE!!

HOW WAS MARTIN'S WEEKEND?

mortonlake said...

glad my friend is back.if it was me,i would write your letter,sending copies to your local press,nationals,MP when you know who it is,lol,and every cancer charity there is.its a bloody disgrace.hope you continue to improve,and the pain eases,take care jane,always in my thoughts,love mort xxxx

tinkerbell said...

So sorry you have had such a rough time Jane and just when you could do with a lift you get a wonderful invitation to a dinner to find out they expect you to pay, shame on them Jane, they should at least treat you for all the help you have given to them.Shall watch with great interest to see what sort of a response you get to your letter.You continue to stand as one of the most awesome people I have ever come across,You will remain in my thoughts and prayers.

Jan said...

So pleased to see a posting from you Jane ,so sorry you have had a very rough 6 months and yes that invite is an insult ,do let us know the outcome ,meanwhile enjoy bieng at home love Jan xx

Missie said...

I'm glad our back. Can you tell you've been missed by your comments? Take it easy.

Pam said...

Jane - I have been following your story for quite awhile. I'm also a fellow Kidney Cancer Warrior and I'm so glad that you are feeling better. I'm praying that you will improve more and more each day.
-Pam

Kristy said...

So glad to see you at your blog again Jane! I had been so worried about you. And shame on them for sending you an invite to a dinner that you are expected to pay for. I would say the least they could do is pay for your meals.

Hope you are feeling better. I can't wait to read their response to your letter :)

Jeanie said...

Dear Jane

Go ahead and send that letter in reply to your invitation
How could they be so thoughtless and uncaring!
I too found out all about the extra expenses incurred during my breast cancer treatment. I was expected to travel a 60 mile daily round trip for my radiotherapy and a thirty mile round trip for my chemo once every three weeks. I ended up alone in a hospital flat for the better part of a month because I couldn't afford to pay the petrol fees daily or the carpark fees.
CancerCare helped me out with food vouchers and the flat.
It is awful that we have to worry about money when we need all our energies to fight our cancers.
I do hope your pain relief kicks in soon. Chronic pain is tiring and wearing but you are coping and fighting with it so well. I'm glad you are feeling a bit better since the blood transfusion. Well done that doctor for finding a decnt vein!
God bless you!
Jeanie xx

Joanne said...

Jane,
So nice to see you back. You are SO AMAZING!!!! Keep it up.
Joanne

Abhi said...

Everolimus is showing some promise. I think you know. But i had to post