I went into hospital for a hernia operation. Afterwards, I was told that it wasn’t a hernia but a ‘small, bloody mass’. The pathology came back as pseudomyxoma peritonei (PMP).
I was in hospital for 11 days for my cytoreductive surgery and HIPEC with a positive outlook throughout. Well, as I said I have a positive outlook and I couldn’t change what I had, and it was no good worrying about it. Before the operation, I gave my kids what they would get if I had died. It may sound morbid but it put me at ease and it was good to see them enjoy what they were given.
The surgeon couldn’t understand that I had no questions for him. On the day of the operation, he asked me again so I asked him if he knew what he’s doing?
He replied “YES”.
I said “Good, I don’t need to worry then!”
Anyway, all went well after nine hours of surgery. During the following eight days, I was crook ill and then got a parasite in my bowel, which gave me the runs. It took about a month to get rid of the parasite completely and I also had to give myself blood thinner injections for 28 days.
What most surprised me about the whole experience is how you have to change the way you live, the things you have to take easy and the things can’t do straight away.
The three things I’d share with anyone diagnosed with PMP are:
- Be positive
- Keep your mind active
- Find someone to talk to if you feel down
The one thing I’d say to take to hospital with you is a positive attitude (I warned you I was positive!). What surprised me most during my recovery are the changes I had to make to how I live, the things that I had to take easy and the things I couldn’t do. I’m very independent and found it hard to take things slowly. During my recovery, I kept myself busy with the renovation plans for my house and anything else that would keep me busy. I’ve since had a postoperative tear of 20 cm which I am due to have repaired and I’m still positive.
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Diagnosed with pseudomyxoma peritonei when I was pregnant
Lauren was diagnosed with PMP following her 20-week prenatal ultrasound.
How shall I tell my children that I have appendix cancer?
Looking back, I think we were trying to protect our children from the reality of the disease. Initially, when we discussed my diagnosis, we used terms like death, dying, chemo and cancer. We thought we spun this into a very positive approach, but our “method” may have given our children a confusing and unrealistic message about survival instead.
I’ve gone from 0km to 10km in just over 6 months!
In 2015, I had cytoreductive surgery and HIPEC for pseudomxyoma peritonei. To thank Pseudomyxoma Survivor for all the support I was given and all the friends I have made through the charity, I’m doing the Southend 10K to raise funds for the charity. I would have been so alone and desperate without the charity and I cannot thank you enough x
Pseudomyxoma peritonei (PMP) is a rare type of cancer that occurs in the abdomen and is characterized by the buildup of mucinous fluid. It is important to seek prompt medical attention if you are experiencing any symptoms such as abdominal pain, swelling or bloating, nausea, and vomiting, so that an accurate diagnosis can be made and appropriate treatment can be initiated.
I was diagnosed with a mucucele appendix in 2014.i had surgery for the removal of it and had to have annual scans and blood tests. I started to ha e problems with my bowels and after further investigation was diagnosed with pmp. In 2018.i had 13 hours of surgery at the Christie hospital in Manchester to remove my spleen gallbladder. Part of my diaghpram. Full hysterectomy and liver ablation. Peritoneum removal. Recovery was horrendous as I contracted pneumonia and ecoli. I was in hospital for a whole month on oxygen 24/7.the whole experience as left me with a a new insight on life. My pmp is now on my pancreas and no further surgery is possible. I may be able to have chemotherapy in future if it starts to grow. Atm. Its only the size of the tip of my thumb. I. Constantly tired and worried about the future. I have 4 daughters who have been very supportive of me. I live alone and have an old rescue dog for company. I have the love of my family and that’s worth everything to me. I don’t think I would have survived without them. I’m a little introverted so I find social situations difficult. However I would like to hear from anyone out there with similar conditions to mine.
Rachel. 63 yrs young.
Rachel, are you a member of the closed facebook group?
Dear Rachel, it’s John here, first of all I hope all is going good for you. I looked into this disease quite well. It is a very slow growing tumour that’s one thing good . So stay positive, I’ve just had my 3 years scans and all clear. Just one thing is there medical reasons why you can’t have any more operations, the information
I have found, is that they can do up to 3 operations, they are call it debulking anyway I hope this helps you . Just stay positive, god bless. John
Each patient is an individual, the surgeon will assess the possibility of further surgery based on the need, quality of life issues and any physical factors. I don’t believe that there is an absolute limit on the number of surgeries.
Angela
Pseudomyxoma Survivor
Hi John, I totally agree a positive attitude is essential, and trying to keep my mind busy during recovery. Recovery for me was the toughest part, and very slow, but once beyond it, nothing is holding me back.
Hi Rachel, I am a 10 year PMP survivor and after surgery with Dr. Paul Sugarbaker, I haven’t had complications or a recurrence, but I keep thinking it may come back, as I have heard in the later years it is still possible even up to 20 years later. I have had many “monitoring” CT scans – and now my oncologists say to be careful to try not to have CT due to the radiation that accumulates, and suggest I might have MRI going forward. “Lazy” bowel is common among us PMPers. I am 63 years old.