I had cytoreduction and HIPEC and now I’ve climbed Mount Kilimanjaro!

My local hospital happens to be the centre in Israel for treating this disease and two of the surgeons working there have extensive experience in performing cytoreductive surgery and HIPEC. To those of you have undergone this procedure, I don’t need to say more. If you are still recovering or about to undergo it, I wish you excellent care, strength, patience, and a complete recovery.

Rare Disease Day 2017, Research, Audrey Hepburn, Sean and us

Rare Disease Day is held on the last day of February every year to raise awareness of rare diseases and the theme for this year is research. Research is key as it brings hope to the millions of people living with pseudomyxoma peritonei (PMP) and other rare diseases across the world and to their families.

I had shortness of breath and my sides ached

I was experiencing shortness of breath and my sides ached when walking around, nothing specific. I had an ultrasound which showed a large tumor which was confirmed by MRI. I had surgery at my local hospital to remove a tumor the size of a football and my diagnosis of pseudomyxoma peritonei (PMP) was confirmed.

Remembering Audrey

Sadly, Audrey Hepburn passed away this day, January 20th in 1993 after being diagnosed with pseudomxyoma peritonei (PMP). All of us at Pseudomyxoma Survivor feel honoured to have Audrey’s, Sean, as our patron and are very grateful for his on-going guidance and support.

I used to lie in bed with this constant nagging pain where my appendix was

When I was 14, I used to lie in bed with this constant nagging pain where my appendix was. Every night, I was convinced that this would be the night it would explode, but it never did. Roll on 25 years and innumerable investigations and potions for IBS, haemorrhoids etc, etc. Nothing ever changed this pain. So I ignored it and got on with life, which largely revolved around being a highly stressed staff nurse and lots of body-damaging fitness (ultra-marathons etc).

Salena is honoured in the New Year List

it really is an honour to be included in the New Year’s Honours List having been awarded an MBE and as such Amanda, Angela, Lyn and Susan would like you to join us in congratulating Salena in having been awarded and MBE for her services to children’s welfare.

Merry Christmas!

It’s been a very long year for the team at Pseudomyxoma Survivor Towers. We’ve seen lots of new members join the support groups and we’ve lost some very special members too. The same applies to our team, we’ve extended the board of trustees (watch out for our newsletter to introduce you to Salena, our newest trustee), experienced the sad loss of our founder and gained some valued volunteers as well. We’ve had ill health to battle and personal issues to deal with along with the usual anxiety experienced with blood tests and scans.

My husband was told to go home and take acetaminophen

In April 2016, my husband, Donald, was suffering from bad night sweats and severe belly pain along with a fever. He went to the doctor in April 2016 and was told to take some acetaminophen (paracetamol) and go home. Less than two weeks later, it was so bad that Donald went to the Emergency Room.

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