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Colleen got in touch with the Community team a couple of months ago to share with us her experiences following her appendix cancer diagnosis. Colleen’s story offers not a great insight into what is a rare cancer, but also the emotional impact diagnosis had on her and how she reacted.
If you’ve been affected by appendix cancer, why not share your experiences in the comments below.
So, on being woken on a Friday night in March ’17 with what I can only describe as a pain that I hadn’t experienced before – it wasn’t excruciating, I just knew something wasn’t right...
Trip to the out-of-hours service and following a couple of tests I was sent home – the pain went the Saturday, only to return the Sunday, and I was due to fly to Barcelona Monday. So off back to the out-of- hours service, and the nurse there sent me straight to the ward at the hospital with suspected appendicitis.
Normal tests for this took place, but they were inconclusive, especially as I had no real pain. They operated via keyhole on the Monday, but when the doctor came to see me he advised that it wasn’t a normal looking appendix – it was 3 times the size.
Life carried on for the next 6 weeks, and I received what I thought was standard follow-up appointment with the surgeon in April.
He asked, “are you on your own?” – I was. Then said, “there is no easy way to tell you this…” I had a bit of a matrix moment – in my head in the split seconds. I thought, “He is going to tell me I have cancer – no Colleen, don’t be stupid, he’s not.” And then those words came, “You have cancer”
Tears obviously flowed, and I was thrown into the unknown. Am I going to live or die? What’s next? How do I tell my daughter? My family? My friends? All these questions just swam around my head.
I had been diagnosed with a rare cancer of the appendix, around 4 in a million – trust me to get the rare one, I thought...
I met with the oncologist who told me to go on my holiday and enjoy myself, as in the coming months I probably wouldn’t be up to much – he wasn’t wrong.
In May I had open surgery to remove part of my healthy bowel, as they leave the stub of the appendix which is attached to the bowel – another 6 weeks of recovery ensued.
On seeing the oncologist, the cancer had started to spread along the lymph nodes – but good news, it was only in 1 of 19 and that 1 was still in the stub.
I was fortunate enough to have BUPA cover and therefore had a portacath inserted for treatment, so in June I underwent this and the following day the chemo started.
It’s such a bizarre time when you are facing cancer, and as a woman you worry about losing your hair, which might seem superficial. I didn’t, but it went thin and knocked my confidence, and due to the drugs and steroids I also put on 4 stone.
The chemo that I underwent was twofold, I had an infusion in hospital and then went home with a pump for 48 hours before it could be disconnected – so no showers and sleeping on my back as the pump was in a bum bag.
I was lucky I guess with the side effects, compared to some, but having to wear gloves in the summer as I couldn’t have anything cold on my fingers, not being able to open the fridge to take milk out, and the constant nausea was immense – if I wasn’t eating I was feeling sick.
The mental side is something else, I was so bitter. Why me? Why did I deserve to get Cancer? What had I done in my life that was so bad? All these questions, but there are no answers, as I did nothing wrong, and only now do I realise that.
How I treated people was awful too, in particular my 26-year-old daughter – but I couldn’t stop it. I pushed people away, but lucky enough people understood and stood by me and people also came back into my life, for which I will be forever grateful.
I had 12 cycles of treatment, but I nearly stopped after 9 due to the side effects – but we withdrew one of the chemo drugs and I completed all 12 to give myself the best chance, and boy I was proud!
In December I had my CT scan which showed a lymph node had doubled in size to 12 millimetres, so I had to wait 6 weeks to have a PET scan in January. It decreased to 8 millimetres, but the team in Basingstoke, who are specialists in appendix cancer, wanted to see me to discuss my future.
In January ‘18 I went to Basingstoke and to say I was shocked was an understatement, as I thought I had had all the treatment possible. They were offering me cytoreductive surgery, as the risk of developing peritoneal disease was 50%. If I had this surgery and the prognosis would be 5 to 7 years – it was a no brainer and I opted for surgery early February.
I underwent cytoreductive surgery; 9 hours on the operating table with many things removed and 3 days in the Intensive Care Unit, but I knew this was the end of my journey for treatment and within 9 days I was out of hospital – which they couldn’t believe. Neither could my friends and family, but with paracetamol and a positive mental attitude I recovered quickly at home.
I am now 9 months on and live a normal life. I have lost the weight I put on and my hair’s back to normal. I am basically living my life, and this is one thing cancer has taught me – live your life, don’t sweat about the small stuff.
I believe I am the luckiest and the unluckiest person – unlucky I got cancer, but lucky it was caught so early and that I was able to have the treatments I had to give me the best opportunity of life.
I am anxious with scans coming up every year, but until then please ALWAYS TRUST YOUR GUT INSTINCT!
To discuss appendix cancer with others who’ve been through or perhaps are still going, try taking a look at our pseudomyxoma peritonei or bowel (colon and rectum) cancer groups.
You can also visit the information pages on our website to find out more on appendix cancer or pseudomyxoma peritonei (PMP).
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