Introduction

I am Alison, I'm 32 and live in London, UK. I am a struggling (very) actress and have worked on and off in an office for years. 

My story starts with my being hospitalized with the Epstein Barr virus - glandular fever and viral meningitis in May 99. I was very poorly and they kept me in 3 weeks. At the time of my discharge they still didn't really know what was wrong with me. 

I recovered slowly and then in May 2000 started developing an itch all over my body. I have a history of allergies and skin complaints and my GP took blood on three occasions - my glands had swollen up and then gone down again leaving behind a lump above my clavicle bone. 

The Doc referred me to Dermatology in October 2000 by which time I had also developed a rash on my chest and eczema on the inside of my elbows. The rash was biopsied and they tried a needle biopsy of my lump but it didn't work. At this point I was pretty frustrated, because although it seemed to me pretty obvious that all these things were connected the Dermatologist seemed to be treating them as separate issues, I got angry and said "Well, what is the point of cutting out the lump if you are just going to tell me it is one of those things that comes and goes and can't be treated." He just said "it might be Cancer". 

I was too shocked to answer and then angry. I agreed to go to see the Plastic surgeon to plan the biopsy and scheduled the surgery. I had a lucky escape on the day of surgery, the lump had appeared to have "gone down" significantly and I was given the choice, I thought since I was there I may as well get on with it! Thankfully, I returned to Dermatology two weeks later and he said "It IS Cancer" - of course in retrospect he knew all along the classic signs of Hodgkin's disease, but how much easier it would have been for me if he had shared that with me then. 

I was in shock, thought I was going to die - immediately, I heard him mention Hodgkin's disease and Chemotherapy and radiotherapy but I just asked to lie down. No one was with me - there was no one to call at that point. I should point out at this point that a great deal of staff in our hospital do not have English as their first language - this was the case with both the Doctor and the nurse on this day. I came home and my house mate rang the Lymphoma Society from a list of numbers the nurse gave me who gave her a lot of helpful info. I found out then that I had a "good" cancer - that there was hope. The hard task of informing parents and then the next day the first meeting with an Oncologist.

For those embarking on their journey within Great Britain - it is not unusual to never see the same Oncologist twice in a row. I have only had that pleasure once. For me it is the second most frustrating part of the process - the first being the amount of waiting.

After my initial meeting I was on a whirlwind of tests - Lung function tests, Heart function tests, a PET scan - where you are injected in the foot and given a relaxant (Valium, I think) and made to rest for 1/2 an hour before lying down and being taken thru a huge drum of a machine - take a favorite CD or tape - they will play it for you. A CT Scan - you need to drink about a pint and 1/2 of liquid pretty nasty tasting disguised with a cordial - I prefer lemon, make a request - and then you lie down and are again taken thru a drum but are asked to hold your breath and have your arms over your head. The Bone Marrow biopsy - I was sedated but still felt the pain - can't remember much else mind you, it is an uncomfortable procedure but doesn't last very long and they try as hard as possible to make it as easy as possible.

After all this I was "staged" - I am a Hodgkin's disease classic stage II A NS Grade one. Stage II means I have cancer in the middle of my chest and in two lymph nodes in my neck. Stage A means I didn't present symptoms - weight loss, night sweats etc.

I was told because I was an A patient I couldn't participate in the trial - comparing Stanford V the new regimen (and the one I wanted really, because it is over quicker and with hopefully less long term effects) and ABVD. So I was going to start the established regimen ABVD. Believe me, I would never have been able to make the choice myself over treatment so I was glad that was made for me and that I could just trust that it would work.

The first step towards my Chemotherapy would be the installation of a catheter - I was talked out of having a Port-O-Cath by the radiologist who installed the line I now have - a Hickman Line. This is a tube which goes in thru my neck into a major artery and out through the middle of my chest (typical bloody man didn't account for the fact that I have breasts - large ones! so my cleavage is pretty much in hibernation) it was very tight after the procedure and pretty uncomfortable - but now I really do forget it is there sometimes. It makes treatment SO much easier - my blood is taken from it and my drugs put into it - no needles, no vein pain. I highly recommend it.

My first Chemo session was actually quite exciting, I was, of course, apprehensive, but really felt that I could now start fighting this thing. The battle commenced. I was given two lots of anti sickness drugs first. A huge syringe-full of Red liquid (the A of the ABVD) a small syringe of Vincristine, a small bag on a drip for 15 mins (D) and a big bag on a drip for about an hour (Bleomycin). All over in about 21/2 hours.

The biggest drag is the wait for drugs - all my chemo days are the same I turn up at 9am give blood - wait for Oncologist lucky dip who will it be today? wait two hours in and out in 2 mins - then given a pager while the drugs are ordered. I have never waited less than 3 hours for my treatment.

My house mate comes to my treatment sessions with me as my partner is in the army in Germany and is unable to get back.

Side effects: I have been very very lucky up until now. Very mild nausea on two occasions, my mouth starts going a bit weird after treatment day, and by day 3 looks like a bit of cooked chicken, they give me a mouth wash which helps. My taste buds completely go, and sometimes I get a funny flavor in my mouth. I also get a very buzzy head starting on about day four after tx and getting to it's worst day 6. I've also gained about 14 pounds in weight.