Hi
Recently diagnosed with stage 4 stomach cancer with mets to peritoneum and 2 infected lymph nodes. My journey so far has been a trial to say the least. I was referred under the 2 weeks rule on 6th January 2020 and received my first chemo on the 26th March. I’ve had to fight all the way to try and speed things up, without any success I might add.
Having been an advocate for my son who had a rare immune disease and working as the communications coordinator for an international company, I’m not fazed by having to deal with persons at a high level of responsibility and believe me I’ve had quite some run ins in my time dealing with the NHS.
Being a researcher I knew the NHS guidelines on treatment targets. Unfortunately my cancer specialist nurse did not. She assured me the guidelines were 62 days from diagnosis to first treatment, I assured her they were not. They were 62 days from referral to first treatment. Anyway, I won’t digress.
At my first meeting with the surgeon and nurse it was still 50:50 that my cancer was stage 3 and could be operated on. The nurse however, thought at that point, bearing in mind I had never met her before and my poor husband who was with me was in complete shock, felt it ok to say ‘you might want to know how long you have to live and you need to fill in a DNR form. She was so brutal and uncaring that I jumped in before she could continue and said ‘when I want to know I will ask’. This was for my poor husbands benefit. I had already done my research for the worst case scenario and knew my chances of surviving 5 years were about 4%. I already knew I was going to fight and I was determined to be one of the lucky few. If I survive any length of time I am also determined to try and make this process better for other cancer sufferers who are newly diagnosed.
I had my first meeting with an oncologist on the 19th March. I’d asked to pay privately to speed up the process but was told if I did I’d have to pay for all my treatment privately. At this point I was past arguing with them and let it go. I’ve had numerous problems since. Telephone consultations (2) forgotten about. I had to have his secretary chase him around the hospital to get to speak to him. Arrived for my first chemo to find out they’d forgotten to order it. Etc., etc., sound like a right moaner don’t I?
When I was diagnosed and might I add it took over a month to get the results of my endoscopy after an urgent 2 week referral, which I was constantly chasing up, I was well, I’d just come back from a holiday in Portugal where we walked up to 8 miles a day, up hill and down dale.
I’m only a small person, I weighed 59 kilos when I had my endoscopy, by the time I had my first chemo I wasn’t eating much and weighed 52. Another week or so and I don’t think I would have been fit enough to have it.
Anyway, I’m now on CAPOX, Oxalplatin and capacetabine. The oxalplatin is not nice at all but I think it’s working. I’m eating full meals and have gained a couple of pounds in weight.
I’m interested to speak to other people who are further down the road than I am, it’s a lonely and frightening journey. But the games not over till the fat lady sings and there ain’t any fat ladies in my house.
Update.....after 3 lots of CAPOX I had my first CAT scan on 1 June. On 10th June we got the news that the scan looked clear. NED. Great news but now I’m terrified about it coming back.
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