Finally an op date !

Finally a diagnosis four months after being put onto the Suspected Cancer Pathway. A protocol that sets a time frame of 3 weeks for urgent cancer diagnosis.

On Friday 13th September I was diagnosed with a rare cancer that has originated in my appendix, and was accepted for CRS & HIPEC at The Peritoneal Malignancy Unit at Basingstoke Hospital.
This is one of the few places specialising in this treatment, in the country.
Appendix cancer is one of the rarest cancers, and is of GI origin and is only found in 3% of all colorectal cancers.
The histology, showed that I have mucinous adenocarcinoma of GI origin, that has spread to the ovary. This called a Krukenbergs tumour, hence it was first though to have been an ovarian cancer by the Gynae team at Raigmore hospital in Scottish Highlands.
I also have some smaller metastasis in my peritoneum. The cancer produces lots of a substance called mucin and fills the abdomen with tumours and a jelly like substance, and its this, and the huge tumour is what has making me feel bloated sick, constipated and ill for the past 4 months, and possibly for a year or two before.

Its hoped that there is no spread to the lymph nodes or illium ( small bowel) which would makes my prognosis even worse.

Today, I've been told my surgery is scheduled for 15/10 just two weeks away.
I have also had another CT scan today, to assess if my cancer has progressed. It hasn't and I am very happy to hear there are no changes.
It's a very worrying time.

If everything goes according to plan I will still have a major 10 hour surgery.
The first part is Complete Cytoreduction Surgery ( CRS), which will result in a r. hemicolectomy ( removal of my diseased appendix and ascending colon), a splenectomy and likely my gall bladder excised, and if unlucky, may have a full colectomy and bowel resection.
My r. ureter, which the tumour has engulfed, will be retrieved and ' "replumbed" to my kidney.
My small intestine and liver will be checked for tumours, if there are any, they will be removed, or the surface scraped clean, as best they can be, and finally I will have my peritoneum and omentum removed as these membranes act like a net to catch cancer cells.
After all this I will then receive the HIPEC part of the treatment. Here
Heated Intra - Peritoneal Chemotherapy drugs at 42⁰C, are poured into the abdomen for a period of time, and then washed out after 90 mins.
I will likely end up with an iliostomy. This may be temporary, and I'm hoping that will be the case, but if disease progression is worse than seen on my CT and CT PET scan, then it could be something I'm going to have to live with.
I'll be in Basingstoke 3 weeks with 2/3 days in intensive care and likely on a ventilator.
I'll wake up with a naso - gastric tube, a urinary catheter, possibly an iliostomy, and massive scar from sternum to pubis, with no navel !
I will have an epidural for pain and a morphine pump. It's not called the Mother Of All Surgeries for nothing and it can in rare cases ( 1/100) be fatal.

I will, when able to mobilise reasonably well, be allowed home, with care and supervision, but may need as long as 4 /8 months convalescence with support.

If I do have spread to the small bowel, I will need chemotherapy in around 8 weeks, but it's also likely anyway as a 'belt and braces' approach to mop up any further cancers cells floating about in my body.
The operation is just the first stage.
Then I have to get up and get on with a new life with cancer (possibly an ever present threat) requiring CT scans and ultrasounds for the rest of my life.

How did this happen, you may ask?

For me, I believe it was a long time developing, making me feel more and more unwell every year, and so tired that every day looking after my dog, my horse, and my husband instead of stopping and saying I'm not well, this needs to be investigated, was leaving me utterly exhausted daily.
I had no one who cared about my welfare, or to lean on, or to encourage me to seek help.
Instead, I was totally alone and the selfish ex husband piled my stress levels even higher.
I had no idea, I was so ill until one day I looked in the mirror and saw my mum looking back at me ( she died of bowel cancer 50 years ago) and heard the phrase " You've got cancer" in my mind.
My body knew weeks, before my brain did that i was ill!

It was two weeks later that I discovered the 18 x15 cm tumour in my abdomen when pulling on my jodhs to go up to see my horse.

All I can say now, is please get a check up if you ever think something doesn't feel quite right in your body.
I didn't listen to my failing health, just carried on looking after Maisie, Pixie and Nick, come blizzard and gale force winds, often in the dark, and always with no support.
I thought it was all just to do with advancing years. Plus I was terribly unhappy and blamed my ill health on depression,  as did my husband.
Even my GP did not run any tests on me, despite them knowing I had Fibromyalgia, and Pernicious Anaemia ( vit B 12 deficiency ) which has been shown to have a link with Gastrointestinal cancers!
I was basically told it was my B12 deficiency and vague aches and pains and increasing constipation issues to do with age and depression.

So, be hypervigilent about your health and don't be hesitant asking your GP
To have a look.

My GP was the first to say, when she felt the tumour in my abdomen,

"Kate you do realise that this is likely Cancer ".