My History

I've been wanting to write a blog about my experiences for a while, but never did get around to it.
I've finally decided to sit down and sort it all out, so i'll start at the beginning, and add some blog entries from my diary.
Apologies if some entries are long, and also written in different tenses - it depends when I actually wrote them!

Tuesday, 22 June 2010

Getting there (still slowly, and painfully!)

Ok, so, Bank account set up, deposit (£10,500) paid to the Royal Free.
Doctors at Royal Free have to wait for test results before giving me a date.

MUGA Heart Scan done, PET scan done, Bone Marrow Biopsy done (although I did wake up halfway through! Ouch!)

Yesterday was my Christies appointment, where I decided to chase test resuts.
MUGA Results - 64% (the doc said this is spot on)

PET scan results - fluid on the lungs, cancer in lymph nodes on left side of neck, cancer in lymph nodes under right breast muscle, under right arm, in right neck, in chest (causung pressure on sternum and a rash).
Luckily(?) even though its spread to my left side, it's still all above my diaphragm.

Fluid can be removed if it gets worse and causes problems.

Bone Marrow Biopsy results take's been nearly 2 weeks, and we're expecting another week or two depending if the pathology lab will rush the testing. We're still apparently waiting for the bone to dissolve.......nice.

Symptoms now include pain under arm, sternum, neck.
Shortness of breath, especially when laying down (this is obvisouly made worse by the tumours pressing on my lungs, and also the fluid), wheezyness, and extreme fatigue.

I've been extremely tired for a few weeks, sometimes sleeping most of the day and night. Have had 2 blood tests done which show my bloods are all at good/acceptable levels. (White and Hemoglobin both at about 10.2).
Doctor at Christies said the fatigue is just part and parcel of the lymphoma.
It's hard to get up out of bed most of the time, but I am trying, not that I can manage much when i'm out!

Tonight is the Fundraiser Meal. Quite looking forwards to this, as a lot of people are going to be there, lots of friends, hopefully good food too!
We sold nearly all the tickets, which we are surprised about, as we've only had 2 weeks to sell them in!

Hopefully next time I update I'll have a date for my trip down to London to the Royal Free Hospital!

1 comment:

  1. Delighted to hear you have the deposit paid to the Royal Free - I so hope you get your appointment very soon xx