Tina’s Story
My story , so far, starts in the spring of 2018. After months of feeling unwell and unable to shake off a nasty virus, I had some blood tests done and the results showed I had some form of leukaemia.
I was then referred to a NHS haematologist and after a few weeks without any contact, I told my GP surgery I had heard nothing and was informed that there was a 6 months waiting list!!! So I went to see a doctor at Goring Hall, privately, who, within a very short space of time, confirmed I had CLL.
He advised that I would go onto a "watch and wait" plan, which initially I found quite difficult to understand, as I had always believed that with cancer, the sooner you start treatment , the better outcome! But after doing quite a bit of reading around the subject, I came to see his reasoning. I settled into having 6 monthly blood tests and monitoring my general health, as advised.
Then just a year later, I started to feel generally "not right", I did have some digestion issues, which my GP put down to the fact I did a lot of travelling and eating different diets but I felt it was more than that, I was doing my routine poo stick tests, which always came back normal. After many fruitless chats with him, he referred me to a gastric consultant, or rather didn't!! After many weeks of hearing nothing, I called the surgery to ask if it could be chased up, as things weren't getting any better for me. I was called back and told he had forgotten to send the referral, so he would now send it marked urgent!!
Again, I waited and when I called the GP surgery again, I was told to call the hospital department direct, which I did and was told that the gastric consultant had decided to transfer my referral to the colorectal department and so I had to call them, which I did.
Eventually, I managed to get to speak to a secretary, who advised me that my referral had been received but was not marked as urgent and so I would be waiting months. I was very upset by this and called my GP surgery and asked them to intervene on my behalf, which they did. I got an appointment with a colorectal consultant in August 2019, who was not a nice man, made me feel like I was wasting his time, as he told me "there is nothing wrong with you, you need to see a nutritionist". I'm not usually a difficult person, I don't think?? But I was not going to walk out of that room without something more being done, as by now I was not very well. He VERY reluctantly gave me the paperwork to book a colonoscopy, which I had 5 weeks later and was diagnosed with stage 3 colon cancer. My stubborn behaviour had paid off, thank goodness. At this point I felt like I was probably in deep trouble, having CLL and bowel cancer but I felt the surgeons were going to give it a go and so was I.
After being fast tracked through the system and being scanned and probed by all sorts of wonderful people, I was booked in for surgery on 19th September 2019, which was carried out by a brilliant team at St Richard's in Chichester. The tumour was removed successfully along with a great many lymph nodes and I had a stoma created, which I named " Paloma". After a month or so, I went back to the hospital for histology results and yet more bad news, they had found cancer cells in one of the lymph nodes, so I was going to need chemotherapy! But after more tears, I started the treatment, which involved infusions and tablets for two weeks at a time, every three weeks for 4 months. It was brutal, to say the least, BUT IT WORKED!!!!
When I finished the chemo', Paloma was reversed, took a while to settle but all is normal now and I have just had the 5 year "all clear" colonoscopy and I'm here to tell you my story.
As CLL makes us more susceptible to skin cancers, I get regular skin checks and last year I had a basal cell tumour successfully removed from my back.
I'm still on just "watch and wait" for the CLL, my WBC count was greatly reduced by the chemo', although at the moment they are on the rise a bit faster than I would like, I've still never needed any treatment, long may it last.
My advise is take good care of yourself, listen only to informed advise and your own body and if you feel something’s not right, tell someone, who can help and keep telling them until something is done for you!!
Tina