I was told that my chemotherapy could be done at a hospital closer to my home and did not need to done at Stanmore. The closest hospital is Southampton to me as there is a bone cancer specialist consultant there
Peter Simmonds who could perform my treatment. I phoned up Southampton myself on Thursday 31st to check if Stanmore has referred me to them and to find out when I could begin my treatment. I then spoke to a really helpful nurse called Louise who explained loads of things to me over the phone such as the things I needed to know about chemotherapy, further tests which were needed to be done and other worries I had such as hair loss and accommodation at the hospital etc. She asked me if I could come down the following day for a meeting with her and the consultant and as I was free I ended up going to see them the following day. What I have to mention is that all the nurses and consultant I've come across have all been very helpful, honest and most important of all they made time to speak to me and I didn't feel rushed or felt like I was just another patient. They really made me feel comfortable and were happy to answer any questions I had honestly and truthfully which is important as you have to trust them with your life to provide you with the best treatment possible. I was also reassured and a good point was made that the statistics which I mentioned earlier that the 70% survival rate includes the patients from more than 10 years ago when treatments were a lot different than they are today. And also as this is a rare cancer in comparison to Lymphoma, out of 100 people that get diagnosed with Ewings a year less than 30 people die while with Lymphoma out of 10,000 people that get diagnosed over 500 people die. This made me realise that statistics are irrelevant and I stopped worrying about them and focused my energy on getting better instead of worrying about numbers. Something else that was also mentioned and something that really did not cross my mind was that the chemotherapy was going to make me infertile. At the moment I have no plans to have any children now or in the near future, but 10 years down the line if I changed my mind it would be nice to have the option. Kindly enough this was then arranged for me to go to a sperm bank the following week and provide a couple of 'deposits'. Nice. I was also then told that before chemotherapy could begin I would need to have a few more tests done:
- Kidney function test - This was a long and boring test. Again I was injected with a radioactive substance and then had to wait 2 hours. After 2 hours, a sample of blood was taken. This was then repeated after an hour and then finally after another hour. Having to give blood 3 times in 4 hours was not the best experience for someone who does not like needles. The first one was the most painful blood giving experience as the nurse must of gone through scar tissue, but luckily the other 2 were fine and not very painful.
- Heart function test - This involves a scan of your heart. I still haven't done this one and this will be done on the day I start my chemotherapy.
- Lumber puncture type test - This is where they try to get a sample of the bone marrow to make sure it is not contaminated by the cancer. The extraction is apparently very painful, they will do it from the opposite side of my pelvis (healthy side) and they use a 'corkscrew' type of tool to get into the bone and get a sample. I will be on gas an air so it shouldn't be too bad. This will also be done on the day my chemotherapy starts.
That day I also finally got the results from the previous chest and bone scan. Thankfully the cancer did not spread anywhere on the bone or on my chest which has made the treatment a little less complicated. All that is left to do now is the few more tests and the chemotherapy should be starting on Monday the 11th of June.
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