Thursday 24 January 2013

The results and the next stage

I had had some pain in my thighs from the lymph node removal so had asked to see Mr Devaja. I rang my nurse and she told me they wanted to see me anyway so off we went. I was told that one of my lymph nodes had been positive for cancer so it had spread, but that it had been removed during my surgery. The Consultants had all got together for a MDM (Multi disiplinary meeting) and the Oncology Consultant - Dr Jyothirmayi had suggested I undergo some extra treatment to make sure I would be clear of cancer. So an appointment was made for the following week.
We went home with my head spinning as usual.

The following week we went to the Oncology clinic and met Dr Jyothirmayi who I must say is one of the nicest, kindest doctors I have ever met. She advised me to have radiotherapy and chemotherapy. The very words chilled me to the bone. The radiotherapy would consist of 25 sessions everyday, except weekends and the chemo would be every Monday for 8 hours for 5 weeks. The chemo was called Cistplatin and would cause hair thinning, but not hair loss.
I was told to go home and think about it and to come back the following week which was the 20th December 2009. Dylan and I discussed the treatment and researched more into it. It was found that it could cause my Interstitial Cystitis to worsen and cause Radiation Cystitis. I was really concerned about this as my symptoms (being newly diagnosed just 2 months before my cancer diagnosis) were quite bad and hard to live with. I contacted the Urology team and thank goodness my wonderful nurse Emily said she would start me on a bladder instillation through my treatment to line my bladder and would carry on with it after my treatment.

I went back to the hospital and signed up for the treatment. I was told it would begin in February of 2010. Before the treatment could start I had to go for a planning ct scan. This would measure the area and I would have tiny tattoo dots put on my hips and pubic area so the radiotherapy machine could be lined up each day. I was also given a talk about the short term and long term effects of the treatment. It would cause diarrhoea, sickness, soreness akin to sun burn around the area, tiredness, loss of appitite and that was just the radiotherapy! The chemo would cause sickness, diarrhoea and tiredness too. The long term effects I didn't want to really think about, I figured I would deal with them later! So the countdown began.....

The day came. 8:30am appointment at the chemotherapy suite at Maidstone Hospital. You are not allowed to have someone stay with you as space is limited. You are given a reclining chair (which is quite comfy) and you have a little table. You have to drink absolutely loads and measure everything that goes in and comes out!
My veins ran and hid so I had to put my hand into a bucket of warm water to encourage the veins to appear.
The nurse put an IV line into my left wrist and attached a bag of fluid. Firstly a litre of fluid had to go in and I had to start drinking and drinking so my kidneys would not be affected. I was given steroids to take and some anti sickness medication. They gave me a dvd player and some headphones and I watched chick flicks through the whole process. Luckily I had my phone too so I could text Dylan at home.
I have never pee'd so much in my life! It was constant!
Next a bag of anti sickness and steroids went up. so far so good. Then the chemo. I just kept imagining this poison going through my body and wondering how this could be helping me.
The nurse brought me some lunch, which was a sandwich, bag of crisps, fruit and a cup of tea. By now I was reclined on my chair, with my dvd and a blanket. I slept a while (inbetween peeing and drinking). After the chemo had gone through it was time for another bag of fluid.
I began to feel a bit strange. My limbs were very heavy and I had an awful taste in my mouth, all of which were "normal".
When the fluid had finished I was told I could leave and go to my first radiotherapy appointment. I went to the radiotherapy waiting room feeling heavier by the minute and rang Dylan so he could collect me. I was lucky we lived about 10 minutes from the hospital, some people I met had to travel miles everyday for their treatment.
I was called into the room. The room is very large and in the middle is a couch/table. You lie on this with your bottom half exposed save a piece of blue paper towel. The staff then line up the machine with your tattoo dots and also draw all over you too! The machine is called a Linear accelearator and as you lie on the couch it moves around you. In the case of pelvic radiotherapy it began on my left side, moved above me to do my tummy, round to the right and then underneath. The whole process doesn't take long (about 15 to 20 minutes) and there is a flat screen tv showing you images of cute animals and ocean scenes lol.
By now I was absolutely knackered and was glad to get home. By now I felt very sick and very strange. I was restless and had very bad muscle tension. My colour was a healthy grey colour too.

The following day I went for my next session of radiotherapy and felt absolutely awful. By the Wednesday I couldn't take anymore. I was sure it was the chemo making me feel so awful so I told my Dr at my mid week checkup that I wasn't having it anymore! He agreed to reduce the amount by a few units. By Sunday I began to feel normal again, ready for the next dose the following day.
The chemo nurses asked me how I was so I told them. The Sister said "Oh that'll be the Metoclopromide (anti sickness drug) making you feel awful, we will get that changed". She got a different drug prescribed and she was right. I still felt terrible, but the restlessness and muscle tension had gone!
The next nasty symptom appeared in the 2nd week. Every Friday night until Sunday morning I had chronic diarrhoea to the point that at some points I couldn't leave the loo it was so bad. We only had one loo too so poor Dylan & Glen had to hang on!

I have never felt so ill. I could not understand how other people having chemo everyday coped. I spent most of my time in bed. I could hardly speak as I felt so sick all the time. I was marking off the days until the end of my treatment and the end couldn't come quick enough.

Eventually after 5 weeks, 15 dvd's, 5 hospital lunches and about 25 toilet rolls it finished.

I NEVER want to go through that again!