Gary died on June 14, 2005. Our thoughts and prayers to his wife Sarah.

From Sarah:

Gary certainly was a fighter and never let the disease stop him doing what he wanted to do. He even built a fish-pond in April of this year (whilst on chemotherapy) and also managed a precious family holiday, with me, the kids and his sister, to Greece this May (even though he was extremely breathless, on morphine and in a great deal of pain). He never felt sorry for himself and was always smiling and joking throughout all his treatments. I am so proud and thankful to have been his wife, even though our time was so short.

Hello all

I know I like to be different, but being diagnosed with this is one case where i don’t like to be. It’s great to find other people who are in the same boat, and reading your stories has been like looking back over the past year

My name is Gary. I am 35 years old and live in Berkshire, Reading. I was diagnosed with Thymic carcinoma in January 2004. I presented with a pleural effusion, dry cough and breathlessness. A biopsy was completed after i was admitted to hospital with what felt like a lump in the upper middle chest. I always thought i was invincible and nothing like this would ever happen, still i guess i got that wrong. my treatment started off with fluid being removed from my chest, which meant going in through the rear with a needle (Still it was better than a proper chest drain i suppose) Two days later i started Chemotherapy treatment, and my God the first 2 cycles were hell!! I was given Epirubicin, Cisplatin and Etoposide. Altogether i had 5 cycles one every 3 weeks. In each cycle i had Epirubicin first, which although not the worse of the three, it was a red colour, so even to think of it makes me feel sick. I then had a bag of Cisplatin and 3 bags of Etoposide ove the next 3 days. It is difficult to describe how the first 2 cycles made me feel, suffice to say i felt like i was being punched all the time. It did get a bit easier though, and the 5th cycle wasn’t too bad. I then went for a Mediasternotomy up at Guy’s Hospital in London. The op was a partial success, but some of the disease had spread to the lining of my right lung and remained. Although i was told that the tumour was very fast growing,i was not prepared for just how fast the beast would grow back. i went to see my Oncologist at the Royal Berkshire Hospital in Reading to discuss the results of the op, and was told that to give me the best chance of remission, i should have radiotherapy. great i though bring it on if it gives me the best chance. I went to have my pre-scans for radiotherapy and was told that the tumour had regrown, making radiotherpay impossible at that stage. Although just a little shocked i tokk solace in the thought that it couldn’t be as big as when initially diagnosed. More Chemo followed, and this time it was a combination of paclitaxel (Taxol) and Carboplatin. Having read all the info on this site it seems things aren’t that different either side of the pond! Finally after 6 cycles i am getting to have my radiotherapy. Following a Pleurodesis operation on 21/12/04 i have now had 14 sessions of radio. I just managed to get out of hospital for Christmas (Although a doctor did try to stop me) So far the symptoms from radio aren’t too bad, and a bit of a breeze compared to Chemo. Apparently they will get a bit worse though, but i’m not bothered. I now go from a feeling of despair on occasions to feeling great about the future. I’m not sure i have accepted that i could lose the battle, but i intend to carry on living life to the full until i drop. My Oncologist has more or less said that remission is unlikely, and apparently belives that i’m very stoical.

Good luck to everyone who is fighting this battle, and remember this as i was once told. ‘Not every battle is fought in public’

Gary Johnstone
January 2005

I am employed with a major railway company (South West Trains) here in Berkshire, England. I am a station manager with responsibility for 200 staff. My work is split between office and station. over the past year i’ve had so many thoughts as to why i have this. One thing that my job often involves is entering staff rooms which are invariably full of cigarette smoke. This evil habit i know is responsible for many cancers, and it makes me wonder if it has caused mine.

I am seeing my Oncologist next week and will find out about the cell type. I have been told that there are no tumour markers with my disease. It appears that in the States patients are either told more or are keen to find out details and figures, this is something that perhaps i don’t do enough.


February 2005

I’m now pretty convinced that my pleural effusion has returned, as the symptoms are very similar, and seem worse on my back. I haven’t got a cough yet but everything else seems similar. Like you my tumour had infected the phrenic nerve on the right hand side, and it was removed during the mediasternotomy i had last June. Consequences are that the diaphragm on my right side and it is now paralysed on that side. I’m not sure about my liver, although i have another scan
in 3 weeks time. I’ve had numerous x-rays which would normally show fluid, but of course the diaphragm is covering the bootom right side of my lung cavity.

Best regards