Just under 2 weeks ago I got a letter from Christies. Now - this letter wasn't exactly to me - it was to a Healthcare company, and i'd asked my doctors to write a report about my diagnosis for the company so I can hopefully get some help with costs of travelling, and perhaps some help at home.
I had phoned the Lymphoma Nurse, and she said I could send the forms to her, and she would pass them on - which she did.
I then received a letter, addressed to the healthcare company, but I had been CC'd in on the letter - fair enough you may say, of course you want to know whats being said about you!
Yep, fair enough, apart from what was in the letter. Perhaps it was the way I interpreted what it said?.....
Now I've always been a positive person, believing I'm going to get better, hoping my treatment will be soon, and will help the cancer even though it's grown so much......then I got this letter and it felt like my world had collapsed around me.
A few excerpts from it.....
"She remains PET positive prior to planned autologous transplantation, which is a poor prognosis scenario."
"However the long term outlook here is very uncertain, we are certainly in uncharted territory"
Fine, you might think.......she's not had a good diagnosis!
But apart from the fact the doctors had never spoken like this to me before (apart from the fact i'm PET positive), and the fact the letter wasn't even technically 'to' me made it worse.
I went to my Mums and broke down, and she called up my Lymphoma nurse. The nurse said she had seen the letter and was disgusted, and that if I felt the way I did, then they weren't doing their jobs properly. She went off and spoke with one of the consultants, who said they would phone me.
One of the consultants did phone me - not that I was overly happy with what was said - but am I ever?!
She first told me I had said I wanted to be CC'd into the letter (apparently I'd said it to the Dr who wrote it) - I told her I hadn't even spoken to the doctor who wrote it, to which she replied "Yes, I know". Confused? Me too.
She didn't deny or confirm anything (I don't think they could anyway tbh - as I've not had the latest treatment yet!), but what she said is that my future is uncertain, but they certainly haven't given up on me, but the more treatment Lymphoma has, the harder it is to get rid of.
I spoke to my Psychologist the next day, and as always she helped me to rationalise my thoughts. I did feel easier after speaking to a few people who are close to me, but of course the bad thoughts like to creep in!
On another note - I've had my pain killers changed to Tramadol, which don't seem to make me drowsy like the co-codamol did (ok, drowsy is the wrong word....more like comatosed! I also asked for sleeping tablets, to which my doctor obliged - and they have been helping me actually get more than 2-4 hours sleep a night, but side effects include a banging headache the next morning!
Today is 6 weeks since my appointment at the Royal Free Hospital. I phoned the Lymphoma Nurse up, and they still haven't heard anything. It's getting a bit ridiculous now - as always I feel forgotton, or like it's going to be bad news and I can't have the treatment. The nurse said she will try and chase it up tomorrow, and hopefully I will hear from her - but as always (again!) even though my fingers are crossed, I doubt there will be any news!