A pseudomyxoma survivor herself, Jo shares her story on her own blog and has kindly provided our guest blog for today.
We were on holiday in Thailand when I noticed that it hurt when I laughed. When I got home, I thought I'd just eaten too much - my belly was getting bigger. So I started exercising more, but it didn't go away - in fact, it seemed to be even larger. And I started feeling sick after meals and it jolted in a weird way when I stepped heavily. But I still felt pretty healthy...
After endless tests and appointments, I was told they were 'looking for cancer' - possibly ovarian or peritoneal. But after my biopsy they told me it was a form of pseudomyxoma peritonei (PMP), an incredibly rare cancer originating from the appendix.
I was admitted to C2 ward at Basingstoke & North Hampshire on August 13th, 2013 for complete cytoreduction and HIPEC¹. My surgery was two days later and took 10.5 hours. They removed my spleen, appendix, omentum, ovaries, gall bladder, a section of the large intestine and the peritoneal lining. After surgery the morphine and pain meds really mucked with my head and I experienced hallucinations and paranoia - this was the worst of my experience. I had five days of intraperitoneal chemo, after which they removed the tubes. I was in hospital for just over three weeks. It hurt a lot. The nurses and surgeons were absolutely fantastic and I couldn't have asked for better care.
How has my experience affected me emotionally and physically? It is an ongoing process. Initial shock and terror gave way to dealing with practical matters and concentrating on getting better. You don't expect to be diagnosed with cancer at 34, especially when you felt pretty healthy beforehand. I have got used to having had cancer, but future issues such as whether it will return, and the impact it has had on my chances of having a family - I'm still working on these.
In terms of support, my GP was fantastic and the Specialist Nurses at both Basingstoke and the Churchill in Oxford have been great. My partner and family have been wonderful. I also visited the Maggie's centre in Oxford which was useful. Writing a blog helped keep friends and family updated, and meant I didn't have to go through the whole thing a million times.
Now, I am six months post-surgery and have two more chemotherapy infusions to go. Apart from the chemo, I feel pretty well and although still not at peak fitness or health, feel pretty positive about the future.
My message for others is:
- PMP is not like other cancers. It doesn't spread in the same way and it is (relatively) slow growing. So don't panic if you don't get treated right away - it's better to have the right treatment than be done quickly.
- It will take a long time to feel normal again, but you will get there.
- No one will have ever heard of Pseudomyxoma - get used to explaining what it is.
¹HIPEC - Hyperthermic Intraperitoneal Chemotherapy. Heated chemotherapy, delivered directly into the abdomen, after complete cytoreduction. If the surgeons are able to remove the all the tumours, you will be given a heated chemotherapy drug. This is usually Mitomycin C. This is put directly in your abdomen while you are in theatre and the chemotherapy is left in for 90 minutes. HIPEC will penetrate tumour nodules up to 2.5mm in size. The heat increases cytotoxicity of chemotherapy.