MY bizarre story

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MY bizarre story

Postby SCT63 » Wed Jun 11, 2014 3:16 am

Hi all

I am new here and I need to submit my cancer story. It is long and complicated, but here goes:
I was born 50 yrs ago with a saccrococcygeal teratoma. The drs. didn't know what it was, and as it was largely internal (class 4) they did not remove it until I was almost 14 mths old. This left me paraplegic, with a severe spinal deformity and many internal organ problems due to crushing, and distortion of the rib cage. In 1969 I had a urostomy diversion created, because of renal reflux Additionally, I had many orthopedic operations to try and get me walking. But these were largely unsuccessful, and I've been a full time wheelchair user all my life. But I got on with the business of living! During my teens, I took part in disability sports at national level; I had a career as a local govt officer; and a family (2 healthy children now grown up, and four grandchildren so far!)'

As an adult I began to be plagued by sacral abscesses. Then in 2008, during a routine excision of an abscess, the drs found some suspicious tissue which they sent off for analysis. During my post-op 6 week check up, I was informed I had a malignancy somewhere in my lower abdomen.

After 18 mths of visits to my local hospital and then to Christies Cancer Hospital, Manchester, and various tests including a colonoscopy, MRI. CT etc, it was decided that I had a large stage one mucin secreting neoplasm of unknown origin, but possibly related to my original teratoma. It was also decided that here was nothing that could be done to remove/reduce it. No-one could give me a prognosis and I was sent home bewildered and confused. Now, I see no-one unless the tumour create a problem that has to be dealt with, such as an abscess.

Because it resides in my pelvic area and was most definitely uninvited, I decided to refer to it as The Squatter In The Basement! :lol:

So, the Squatter makes its presence felt by creating large abscesses in my sacral area from time to time (I've had 27 in 24 yrs) and most recently by puncturing my ileal conduit causing me to bleed into my urostomy. I am undergoing further tests to try and ascertain whether this is going to be a regular thing now, and if so how to get around it.

So, at present, I am recovering from another abscess (this one ha left a hole 6 cm deep and 7 cm across which nurses are packing and dressing each day). Once this has healed i wait to see what the next assault will bring. In the meantime, I enjoy time with my family, and friends. I have a strong and abiding faith. I have many hobbies and interests, I live on a beautiful island off the UK coastline. All these things combined help me through the tough times.

Thanks for reading!
Posts: 3
Joined: Mon Jun 09, 2014 3:52 pm
Cancer Diagnosis: stage 1 mucin secreting neoplasm
Relationship To Patient: Self

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