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Although close family members have been affected by cancer before, I had never heard of pseudomyxoma peritonei (PMP) until I was diagnosed. When I had abdominal pain and a small hard lump to the left, thought to be IBS playing up, I needed to get home to get it back on track. I have always had a “pot belly” but it was growing as was a low-grade ache, obviously dismissed at first. About six weeks later, I experienced shortness of breath and smaller appetite and knew something more serious was going on.

My GP (Haus Doktor) at first diagnosed a hernia so I dismissed surgery until it got worse, it didn’t take long! It only took about six weeks from my original visit until initial diagnosis, but a gynaecological consultation compounded action, slightly delayed by German and Dutch public holidays. An MRI scan at the local hospital confirmed the gynaecologist’s concern and thenceforward it was like a runaway train.

HIPEC treatment was given during and following surgery. I initially stayed in hospital for 13 days. I spent less than 24 hours in Intensive Care, five days in High Dependency and a week on the ordinary surgical ward. I think I was lucky, the Uniklinik Aachen is one of the biggest and most advanced teaching hospitals in Europe and I was under the care of the Chief Surgeon – Professor Neuman, though his 2nd did the actual surgery, Dr Binnebosel, with others. The hospital had the HIPEC machine but had to book the operator to administer. On the downside, the language barrier was a potential problem for me (I’m British and live in Germany).

Because of other medical conditions, I had been effectively given a death sentence 30 years ago. I am still here and healthy, so I believe I have a fairly positive mental attitude. There were questions whether the tumour was PMP or was ovarian so it got christened “The Alien” (as in the film) and I was going to have an elective cesarean (of the alien ?), I tried to keep it light. I really didn’t grasp the seriousness of the surgery and treatment but here I am, older and alive.

My husband was very supportive and did his research. In fact, he was sent home sick from work to care for me from the operation until the end of September, my cousin (and good friend) had had bowel cancer was also great support. Prior to full diagnosis, I had a lot going on so really just wanted to keep it quiet and didn’t tell my family until just prior to my first hospital visit which was just after my Mother’s funeral.

It is four months since the initial surgery and I am trying to regain normality. However, following the surgery, I had an infection and was readmitted for a further eight days, after a second colonoscopy. I asked to be anaesthetised for the procedure and unfortunately, I became very nauseous and was emergency admitted for two more days and following the stoma reversal was nauseous. In fact, after the initial surgery, I felt nauseous and the cardboard kidney dish became my “noo-noo”. I believe that anaesthesia can affect you thus.

Every few days my husband wrote an “Alien/ex-Alien situation report” email and sent it to friends and family to keep them abreast of my current position. If he missed a few days, he got bombarded to see how things were progressing. I also took some time to write from the coal face occasionally, friends and family reactions were so very encouraging so I recommend that.

There are good days and bad, I lost 20% of my body weight and am struggling to regain. The backache from the hospital bed has been difficult to bear and is only just diminishing. Scar tissue from the stoma causes stomach and then bowel pain, the best plan is to avoid eating(not good)!

I survived as a Brit admitted to a German hospital and I very limited German language skills. My husband bought me a new extra large Ipad and installed all catch-up channels along with Amazon Prime and Netflix – this was a life saver as it took me a while to start reading again.

The extreme loss of weight and the eating problems after surgery were a great surprise but in general, I have tried to take things in my stride and put a humorous spin on my situation. Following surgery I developed heightened smell function, the nutrition in the drip came out like horrible German Schwein, the anti-bacterial hand spray upset me and even now four months on. my pantry and herb and spice drawer are disgusting! Coughing and sneezing come from the abdomen and there is nothing there still to push against; consequently, both are still difficult.

I have become addicted to daytime TV and started reading light novels again, latterly I have been knitting. Anything requiring close vision or too much concentration has left the building. Initially, my husband tried to get me active until I fell ill prior to a check-up, the feeling of things moving in the abdomen almost sloshing from side to side. Being fussed over has been difficult to take too.

I’ve found the website really useful – you are not the only one doing this, it’s good to share! Finally, I would recommend that you:

  • Stay positive and retain your sense of humour
  • Don’t read or Google too much into it, ignorance can be bliss!
  • Try not to worry!!!

– Helene



*Helene chose not to share a photograph so the one shown here is of a model.

#Colonoscopy, #CRS/HIPEC, #pseudomyxomaperitonei

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