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My journey with this rare cancer began in February 2002. I had just returned from a family holiday with my husband and our three children who were then aged 10, 7 and 5. When we got home and I looked at the photos, my stomach looked really distended. After noticing this it just seemed to get worse and felt quite hard. I went to see the Doctor and he said I probably had wind or had just put on weight. After a week or so I still had no improvement so went back again and was told perhaps I might have a hernia or something but still nothing was done. I made yet another appointment and this time it was agreed I could have a scan. This was arranged for the next day.

Julie shares her story with Pseudomyxoma SurvivorWhat ensued was a complete whirlwind. I went for the scan on a Tuesday morning. By 5pm, the results were back at my Doctor’s surgery and a very rushed appointment was made for me to see a Consultant Gynaecologist at Southend Hospital early on Wednesday morning. When I saw him he gently told me that they had found an ovarian tumour and some liquid and that I could go back in a week’s time for a hysterectomy. I was very distraught and didn’t feel I could go home and spend a week trying to be normal; I just wanted the tumour out! The Consultant said as I felt that way he could perform the operation that afternoon. So with no time at all to come to terms with what was happening I had a hysterectomy at age 39. My care at Southend Hospital was fantastic, everybody was so kind.

I spent 10 days in hospital and was visited by a counsellor who spoke to me about dying and wanted to speak to my children too. I didn’t feel particularly comfortable talking to her and definitely didn’t want her speaking to my children. Everyone reacts differently and I didn’t want to accept they were preparing me to face dealing with the fact I had ovarian cancer. I think I was at home for about a week and then had to return to hospital to get the pathology results and to see what the next steps were to be. I will never forget the Consultant’s words “You have not got cancer; you have a rare disease called pseudomxyoma peritonei (PMP), which can only be treated with further surgery”. Someone in Pathology recognised what I had, which was quite unusual in 2002 as it was so rare, so luckily for me Southend Hospital was able to point me in the right direction. It was arranged for me to visit Mr Brendan Moran, the Specialist at Basingstoke.

I found out the treatment would be a further operation and that I was a suitable candidate. I had to wait until six months after my hysterectomy so I would be strong enough to withstand this further op. In January 2003, I travelled to Basingstoke and had the operation, it took 13 hours. I had already had a complete hysterectomy and now had my appendix, spleen and gall bladder taken out, part of my stomach removed and disease had to be removed from my abdomen and stripped off the surface of my liver, and a few other bits and pieces while they were at it! I was given heated chemotherapy at 41˚C directly into my abdomen to hopefully remove any cells which may have remained. I spent five days in intensive care, then went back to the ward to continue my slow recovery. I was in North Hampshire hospital for a total of four weeks. The care there was second to none, absolutely amazing. I came home for the next instalment of the recovery process, which was probably a further three months.

After all this I felt very well and eventually completely back to normal and life continued as before. I had to have an annual scan at North Hampshire Hospital. After about six years, some abnormalities showed up on my scans but they were stable for a couple of years. In 2011, it was decided I would need to be operated on again as the recurrence had grown in size. In February 2012 I went back to North Hampshire hospital. This time the operation took 7 hours; they had an awful lot of adhesions to get through, which was quite time-consuming. I had part of my bowel removed which they managed to resect. The mass was removed and I had the heated chemotherapy again. This time I was only in hospital for just over three weeks but still had the three-month recovery period.

It is almost a year later and I am currently feeling very well, back to work and living a ‘normal’ life. The whole experience has taken its toll, not just on me but my whole family. My husband had an awful lot to cope with especially as our children were so young the first time around. The second time was, in retrospect, possibly a bit easier as our children were all teenagers but that also brought with it issues as they were fully aware of what was going on.

– Julie

#pseudomyxomaperitonei, #RareCancer

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My stomach looked really distended