Stanley the Stoma

28/12/2020

I've been very quiet on Facebook and Instagram since my amazing adventures in Croyde and Cornwall at the end of September where I was posting about crashing about in the waves, drinking copious amounts of fizz and enjoying quality time with my friends. Unfortunately the reason for my 'radio silence' is that since returning from holidays my health has taken a turn for the worse and gone downhill quite quickly.

As always, it is much easier to share positive news and tales of fun, but in choosing to be open about what's happening to me, it's only right that I share the not-so-good side too.

At the start of October I picked up an infection that resulted in three separate hospital admissions trying to determine the cause of the infection and the best way to treat it. It meant that between October and mid-December I only had about 10 days at home. During my last admission to Frimley they decided that I had pneumonia and/or chest sepsis and treated me over two and a half weeks.

Unfortunately due to being so poorly, I was unable to restart chemotherapy as planned (the chemo I was on over the summer was found not to be working - it was keeping my lungs stable but my stomach tumour was growing so it was stopped). As a result of not having any treatment the cancer continued to grow and cause symptoms similar to infections - fever/sickness. The decision was made that keeping me in hospital was not what was best for me so I was discharged, once the pneumonia was gone, to manage the other symptoms at home.

I decided to go home to my parents' house initially so that I wasn't on my own and they could help with getting on top of managing the other symptoms. At this point, both I and my parents thought I'd be with them for a couple of weeks until Christmas and then maybe move back to my house after.

Since being home, things have declined even further. In the space of four weeks at theirs I have gone from sleeping upstairs in the spare room and pottering about during the day as per normal to now being in the dining room downstairs with a hospital bed and the room set up as my bedroom. I can't walk further than one or two steps due to breathlessness so also now have to use a commode and have the hospice nurses (from the Rosemary Foundation) come out to help wash me and help us deal with what is going on. I am also on oxygen to assist with my breathlessness as well as very high doses of morphine to help with pain. I am comfortable though - I am not in any pain, and we are managing everything at home with the help of the nurses, Phyllis Tuckwell and an amazing GP.

The elephant in the room is that I don't have very long left - only months. All active treatment has been stopped and I am now under palliative care at home. Hospital will be avoided at all costs so that I can remain comfortable at home until the inevitable happens.

I managed to have a lovely Christmas with my parents and brother and his family, although it was tinged with sadness, but my beautiful nieces provided the perfect distraction for all of us.

There's not really much more to say than that, other than sorry for the super long post and for not being as responsive to messages and contact as I normally would be. Whilst we knew that this time would come, we didn't expect it to happen so quickly, especially not after such a fun and adventurous August/September.

24/09/2020

A little update for you all.... it's obviously a bit more complex than what I've written - but I went into my scan results meeting yesterday fully expecting to be told that the treatment isn't working and that we would have to stop. I've noticed myself getting out of breath and more discomfort in my stomach and my hair has started growing back - so I thought the chemo wasn't doing it's thing.

Turns out it's doing something - but my pesky krunkenberg tumour (the one on my right o***y) isn't playing the game.

So, there is still a chance treatment might be stopped - but we've got some options to explore first.
For now, I've got a 6 week wait to find out whether the options are viable - and I'm making the most of some time off chemo having done 12 cycles on the bounce.

I've had some great UK breaks with friends - and totally lucked out on the weather, and I've also got a tattoo session booked for 13th October!!!

31/07/2020

As per usual, I've been sporadic and a bit quiet on this account. I'm more of a lurker than a poster! I also have a full fledged addiction to TikTok these days!

I'm doing well though - next week will be chemo no 10 (technically 17 but I'm not counting the 2018 Folfox) and it's actually not hammering me too badly! Which is ironic seeing as we're in the midst of a global pandemic and I can't do the living that I want to - although I'm putting in a good effort!

I'm having regular issues with my port - only 2 or 3 of the nurses are able to get the needle in first time and it's also a bit of a temperamental bu**er with the 5FU pump. But it's worth it compared to the ballache admin of a PICC!!

My scans in June showed that the lung tumours have remained the same, and my o***y and adrenal tumours (both around 12cm) had shrunk by a cm or so, and no new growths, so the Folfiri is doing something!
I feel incredibly fortunate - the only real side effect I've had is that my hair totally matted quite early on. Luckily one of my neighbours is a hairdresser and she was able to save enough to have a style rather than full on GI Jane - and actually, it turns out, I probably should have chopped my hair years ago 🤣🤣

As for right now, I'm starting to get out and about a bit more, have some trips booked in September. The Drs won't let me go back to work until after my next scans in September (which I get - risk due to my immune system and fu**ed lungs and I'm a cop - there isn't really a safe option for me!!!), so in the mean time I continue to spend my days voice noting and sending TikToks to and work on my Costa del Farnborough tan 🤣😎

11/04/2020

It's that time of year again. My 'cancerversary'. Two years ago today my life changed forever when I was told I had stage 4 bowel cancer. I had chemo, radiotherapy, and A LOT of surgery. In Sept 2019 I got told I was all clear - until it all came back with a vengeance in February of this year. I now have incurable secondary bowel cancer with tumours in my abdomen, ovaries, lymph nodes and lungs.

Whilst we are in the middle of the pandemic it is easy to forget that life goes on and other issues are not put on hold whilst we're all in lockdown! Choices are limited and the risks are higher, but fortunately I am able to continue with chemo, although this time around it's being much less kind to me!

April is also Bowel Cancer Awareness month, and whilst it feels meh to be putting out an awareness post with everything else going on, it's important to be aware of the symptoms.
💩 change in bowel movements
💩 blood in your poo
💩 stomach cramps/pains
💩 a feeling you've not emptied your bowel properly
💩 unexplained weight loss

Since I was diagnosed I personally know 4 other people that have been diagnosed, and thankfully, treated early. I also know two others who have lost parents to this horrible disease since my diagnosis.

Don't let Doctors fob you off with being too young (I was 35), it being constipation or, my personal favourite, stress related. You are entitled to a referral to a colorectal specialist if you have any of these symptoms persistently.

Bowel Cancer UK

24/08/2019

Symptoms tracker created by a fellow bowlie... https://www.facebook.com/172289494814/posts/10159812073944815/

Have you seen our symptoms diary? It aims to help keep track of a person’s symptoms before they visit their GP. Patients may not remember all their symptoms during the short appointment so having something written down can be useful.
This material has been pioneered by Beth Purvis BowelWarrior, supported by Coloplast and formally endorsed by the Royal College of GPs.https://bowelcancerorguk.s3.amazonaws.com/Publications/SymptomsDiary_BowelCancerUK.pdf

07/08/2019

A big week for me! Went back to work on Monday and IT IS SO FECKING GOOD TO BE BACK!!!! I've had incredible support from my team, managers and the organisation during all of this, so returning is like going home to family! I also made it to clubbercise last night 😂, kept it low impact and didn't do any jumping (as it feels like my insides will fall out 😳) but it was really enjoyable and Bev and I were yelling out the tunes whilst trying to keep in time!

10/07/2019

**UPDATE**

NO MORE PICO DRESSINGS

NO MORE DISTRICT NURSES

I CAN START SITTING 🥳🍑

*************

I've been a bit quiet on here since getting home from hospital. When I first got home, within 3 days, by bum wound had come open (my 'wound' goes from about 5cm above my belly button, down, under and back up to the top of my bum crack!). So I've had district nurses out a few times a week and I've been stuck with a PICO dressing since 16th May!!! I'm still not sitting on my bum as I've got a couple of centimetres left to heal. But today is the first time I've been in a car since 30th April!! We're off to for a check up with the plastic surgeons (they did my vaginal and perineum reconstruction) and will also see the wonderful Nuria, the Tissue Viability Nurse, to check my wound and hopefully advise that I don't need the PICO any more!!!!
I can't wait to be able to sit, and drive again!! I'm soooo bored of wandering aimlessly around Farnborough every day, and I can't wait to get back to work!!!

17/05/2019

I made it home!!! Still on a lot of pain relief and having to take it slow - but so nice to be back in my own home and bed!!!

12/05/2019

I'm up! Made it to M&S to choose my lunch, and escaped the ward for 30 minutes. Might have a little nap now 😴

06/05/2019

So... last night Stanley decided to 'show up' for the first time since surgery on Wednesday.
I woke up at about 5am and asked the nurses to turn me over - can't manage that by myself. I could smell poo - but I'm in a bowel hospital so that's not really that uncommon.
As the turn was about to begin I thought I'd have a quick look... HUGE ball of poo attached to my tummy, having pushed 70% of the poxy little bag they put on, off my tummy....ergo change of bag, change of gown and change of bedding.
Still smells of s**t though as some of it has got under my wound dressings - so they will be changed imminently too! 😷💩🤢

30/04/2019

It's surgery time! Decided to capture my cancer body prior to getting my warrior lines! Also thought I'd get Stanley out seeing as it's month and I'd never seen one before all this!!