A week later I had a CT scan which revealed I had fluid throughout my abdominal cavity — on my liver, diaphragm, appendix, spleen, ovaries, rectum and uterus. Five days later on September 9th 2014, aged 34 and otherwise fit and healthy, I was told by my GP it was highly likely that I had a very rare condition called pseudomyxoma peritonei (PMP). My worst fears were confirmed when he uttered the words “It is a type of cancer”.
He then explained that it could often be treated with extensive surgery at a specialist ward in Basingstoke — three hours from my home in Norfolk. He didn’t know much else about PMP, so my husband and I researched it online and found the Pseudomyxoma Survivor website. Reading about other people’s experiences gave me so much hope and strength — I wasn’t alone with this disease!
Louise
Three months to the day after my diagnosis, I had over eight hours full cytoreductive surgery performed by the amazing team at the Basingstoke & North Hampshire Hospital. I had my gall bladder, spleen, appendix, peritoneum, lesser omentum, greater omentum removed along with a full hysterectomy. I also had a ‘chemo bath’ where Mitomycin-C chemotherapy, heated to 42 degrees, was poured into my abdomen immediately after the surgery. I also had two further intraperitoneal chemo sessions to kill any bad cells lingering in my abdomen. I now have an eleven inch scar (my battle wound!) down my middle of which I’m rather proud!
Fortunately, my treatment was successful and I had no major complications after surgery. It was the toughest two weeks of my life, but the team of consultants, doctors, nurses and healthcare assistants were brilliant. I’ve also been very lucky to have the love and support of an amazing husband and great family and friends.
Apart from a few toilet issues and fatigue, my recovery over the past few months has also been pretty good. I have good and bad days, take antibiotics twice a day as my immune system is suppressed. Daily hormone replacement therapy has helped alleviate some menopausal symptoms. I was pushing myself to walk up to two miles each day just four weeks after surgery, driving after twelve weeks and working part time after sixteen weeks. Three months post surgery, I even ventured 3,555 metres up Tenerife’s Mount Teide in a cable car!
I’ll never cease to be amazed at how strong my body can be and how precious life is.
In case you missed it...
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
I felt something wasn’t right in my abdomen
I went to the doctor as I could feel a swelling and, yes, the doctor could feel it too. After taking pregnancy test under the doctor’s instruction, I was sent for an ultrasound.
I found out I had an appendix tumour during my c-section
Oh, there’s an issue with your appendix. We’ll need to get another surgeon across to remove your appendix. There seems to be a tumour-like growth on your appendix and there is mucous leaking around your abdomen.”
Louise,
I’ve just read your inspirational story…Amazing!!
My husband has just been diagnosed today and referred to Basingstoke. We are also in Norfolk….Mundesley.
Our heads are in a bit of a spin, we have done lots of reading and know we have a long journey ahead!
We are both 40 with 2 young boys…6 and 3 years old.
Hi Zoe,
Thank you for the message, I’m so sorry to hear of your husband’s recent diagnosis.
I’m glad you found my story (and the other survivor stories) helpful. Pseudomyxoma Survivor is a fantastic charity and I can’t sing the praises of the staff at Basingstoke enough, you’re husband is in good hands! Just remember you’re both not alone with this. I am on Facebook, so just drop me a message/send a friend request and it’ll be great to meet up some time soon 🙂
Take care,
Louise.
I had my appendix removed 5 weeks ago. Diagnosed with a low grade appendiceal mucocele neoplasm LAMN. 2 cm. I was told I would have to have scans and be watched for 5 yrs. I’m still having the pinching, gnawing pain in the appendix area. My Dr has said it’s probably the cecum irritated and to take Metamucil. He is difficult to talk to and I’m worried it’s something worse. He said pain from surgery should be over? I need someone that has been through this to talk to. I’m very anxious and I cry all the time. Someone please talk to me.
Please go see a specialist…it will at least put your mind at rest.my daughter (38) was diagnosed last week…we are waiting to see a specialist in this area…it is scary and you need to feel supported and listened to by the doctor caring for you…if not you will be stressed and unable to get thru the healing process…also find people you can talk to about your fears…it will help you…take someone with you to doctor visits…ask questions when you don’t understand…if your doctor does not understand your fear and needs, fiND one who does.
Hi Louise
I have recently been diagnosed with PMP folllowing surgery to remove a large tumour from my right ovary.
I am now waiting for my consultation with Basingstoke but in the meantime have been doing my research!
I just wanted to say that of all the various online resources I have read yours has been the most useful and has really helped me, and more importantly my family, understand what to expect.
And, get this, I too am from Norfolk and only down the road from you in Aylsham!
I’ve had the same surgery 3 years ago in Iowa City Ia by Dr Carlos Chan he saved my life, owned the table 12.5 hrs. 21 day stay no problems at all. Drove again in 3 weeks after getting off pain meds. I am now 65 and NED. Mine was Lamn . Look me up under team Darlene (blue dove symbol)