Hey All,
This is my first blog, i have been on the site a few months, read and reply to blogs and some of u will probably recognise my name from chat.
I joined the site when i had finished the bulk of my treatment and really just wanted to share experiences with people who were in the same boat ( I hadn't realised what a big boat it is!)
U know the saying 'theres always one who likes to be awkward'? Well thats me, I used to like being different, not being the same as anyone else, if all the other kids wanted orange juice, i wanted apple. I was the only child who could find a muddy puddle on the hottest day of the year and if ever i hurt myself, well I had to do it properly! It couldn't just be one broken bone in my foot, it had to be 2! When i had laryngitis, i had to have sinusitus too! I'm sure ur seeing a pattern here?
When i was told just over a year ago that I had Hodgkin Lymphoma, i was shocked at first but asked lots of questions, cried a bit then put my head up and got on with it. I thought it would be quite straightforward by the sound of the treatment, I was positive in my attitude, i did what the nurses said and i just got on with it. I don't ever really recall feeling like a cancer patient. Compared to things others were goin thru, I felt lucky. It even had a pet name, to help me deal with it, its known as the hedgehog because my friend thought i said 'i've got hedgehog lymphoma' which obviously would be ridiculous! As u can probably guess, things weren't straight forward, i had numerous problems with my veins, i had many problems trying to have a hickman line fitted (I think i hold the record for the amount of time it took to get mine in, 4th attempt i mite add and over 6 hours on the table!) and i ended up with quite a few rather unpleasant infections.
It also became clear that the chemo wasn't working, they tried something stronger, that didn't work so they decided to do a stem cell transplant and high dose chemo. I had that in July and had 4 weeks of radiotherapy in september. I was told i would have to wait for at least 3 months to have a PET scan becuase of the radiation. The docs were hopeful it had worked, no more hedgehog! Then i started with my silly cough again, odd chest pains, noticed i wasn't putting weight on etc so i mentioned it when i went on the 10th November. They got a bit concerned that it mite stil be active even tho the hope was that the radio would stop it being active. Actually the hope was the chemo would stop it and the radio would just tidy up the other bits! Anyways, i was sent for my scan last tuesday and have been given the results today.
They weren't very good, hedgehog is stil active! The doctor isn't as certain as before about curing it but there is hope! He is goin to speak to a Dr in London about a trial to c if I'm suitable for it and if so to London we will go! If not then there is some more chemo they can try. I had kinda epxected the bad news because i know my body and i know it still isn't right but for once i just wish i could be the straightforward one instead of the awkward one! I like the fact my hair is growing back, i just want things to be a bit more normal. I'm not sure what compelled me to blog, I feel a bit of a fraud when many on here r so much worse off than me and even some friends I have made at the hospital who have not been so lucky and then here i am and i should be grateful but I'm a bit sick of it now. I will still keep fighting it because it will not beat me but it all gets a bit hard sometimes and writing it down feels a bit better.
Anyone know how to get rid of hedgehogs?
Thanks for listening guys
Emma
xxx
