Guest Blog – How I met Billy (my bag)! – Joanne White


Joanne has written us another brilliant guest blog, this time all about how she came to have her stoma. Joanne is unusual as her stoma is due to a rare type of cancer.

How I met Billy (my bag)!

Once upon a time a long time ago………. Well that’s what it feels like lol.

After the birth of my second child I suffered from an insane amount of bleeding. I was poked and prodded and given every pill in the book but nothing worked. One doctor told me to ‘just get pregnant again’, not the best advice to a mother with a toddler and new born baby. I was so exhausted from just being a mum never mind the amount of blood I was losing. In the end I demanded a hysterectomy and eventually (just to shut me up no doubt) the surgeon agreed and I was admitted to hospital. It is standard procedure to have the removed body parts sent for pathology but I didn’t expect the results that came back.

The report found that I had cancer, the tumour was hidden between the womb lining and the womb wall- hence the continual bleeding. It was a rare form and I was only the second person in Northern Ireland to have this type. The cancer fed on hormones, so when I was pregnant the tumour was having a field day- no wonder both my children were breech- they were sharing my belly with a huge tumour and had no room to turn.

It was then a flurry of CT and MRI scans and consultations with the cancer specialist- I was a bit of a celebrity with my rare cancer. Thankfully the doctors were confident that I had no more cancer but a course of both internal and external radiotherapy was prescribed to prevent the cancer returning. After that I was told if the cancer didn’t return in 10 years it probably wouldn’t come back at all.

Life as a busy working (now single – my husband couldn’t cope) mum soon got back to normal and apart from the yearly check-ups I forgot about the cancer. I met the man of my dreams, remarried and life was good.

Nine years had now passed and I started to get bouts of vomiting and diarrhoea along with terrible stomach cramps, for a year I was in and out of hospital for a few nights at a time and had every scan and x-ray there was- at one point I nearly had my appendix out! It got so bad that I was vomiting my own poo up. Thankfully my cancer specialist realised that the radiotherapy I’d had previously had damaged the bowel and was now causing a blockage. I didn’t quite make it to the 10-year mark after all! So, I was booked in for surgery to have the damaged piece removed and, although a stoma bag was mentioned as a possibility, the surgeon hoped that the bowel could be re-joined with no issue.

After the surgery I woke up with no bag- phew- and after a few uncomfortable days, it was agreed I could go home the next morning. The doctor came around the ward to do his discharge assessment and noticed that my belly had swollen – I looked pregnant. I was rushed to x-ray and my worst nightmare began – the bowel had leaked and I had to go back to theatre. I was told to phone home and say goodbye to my loved ones as they didn’t think I was going to make it – I refused, I was determined to survive. I woke up 24 hours later attached to a life support machine in ICU – with a stoma bag attached to my abdomen – meet Billy!

The pathology report showed the cancer had returned- this time to the bowel and abdomen, it was like glitter – lots of it but very small, which is why it hadn’t shown up in previous scans. I spent a further 6 weeks in hospital and Billy and I returned home for a long recovery. We got to know each other quite quickly as my output was very high – I needed to self-administer a drip for 3 years to replace lost nutrients.

Things settled down and we got used to each other and I returned to work and normal life – Well I say normal, husband number 2 had now left – he didn’t like Billy! (3 is a crowd) To be honest after coming through cancer treatment and life changing surgery, coping on my own again was ok – I had a lot to be thankful for.

Billy saved my life and because of the surgery we found the cancer, which although can’t be treated we can keep an eye on it. As it’s such a rare form we have no idea what the future holds or how long my future will be (do any of us?), but Billy and I try to live life to the full, I still work full time, holiday as often as I can, swim, line dance, go to the gym and even do a bit of modelling for Vanilla Blush.

I have met so many lovely people and have enjoyed lots of new experiences thanks to Billy- I wouldn’t change a thing!