This is primarily a making things blog and I don’t tend to talk about my personal stuff all that much but I’m in a place at the moment where I think some of my experiences might help at least one other person in the future who is searching for information or wanting to read something about this topic, I know I have been helped by reading bits here and there. If you’re not a fan of medical stories, especially those involving poo, come back for the next instalment of what I made when I get around to posting it (there are still things to show you, although for reasons that will become apparent my output has slowed down considerably of late).
I will try not to make this into a novel, but it is a story as such, so I guess I’ll tell it that way. I apologise in advance for the length, give up any time you feel like it!
About a year ago I noticed that I was bleeding when I had a bowel movement. Having had piles all through my 20’s, to the level that in my late 20’s I’d had a operation to remove them, I was pretty ok with it and figured that although I’d not had them for about 15 years they must just be back. I’m a bit of a hypochondriac (understatement) about my health, being aware that as a single parent I need to be healthy in order to actually do the parenting, so after about 6 months, and when I’d resigned myself to a stranger playing around back there checking it out, I made an appointment with my GP who confirmed that he thought it was piles, I didn’t need a scope to check it out as there were no glaring symptoms, and gave me some suppositories. Job done.
The suppositories didn’t do anything though and just after finishing the course I had a scarily bad mucousy bleed which freaked me out enough to call my Drs Surgery and ask to speak to the GP on call about it. In all the time I had piles I never had mucous and it was starting to feel to me just as if something were off, it didn’t feel like piles and I wanted to be sure. The GP on call told me that it still sounded like piles and when I asked her to refer me for a scope she told me that I didn’t need it but if I insisted she would put it forward (she was rather scathing), although it would take a bit of time to get an appointment as my symptoms didn’t suggest an emergency.
I got the appointment and had to reschedule it twice so it was a month before I went, 6 months since the first GP visit and a year since the first symptoms. It’s a horrible test, it’s invasive and embarrassing and you have to give yourself an enema before you attend. It’s just not nice, but I made myself do it assuming they’d tell me I was just being stupid and had wasted their time. Turns out, not so much…
They found a growth, just one, but she informed me right away that it ‘looked like cancer’. After I got dressed I was very very quickly seen by two nurses who would organise further investigations, I don’t think that they see people respond to the c word quite the way that I did, ‘I don’t have time to have cancer’ is possibly not the standard response… I’d attended the test on my own so they watched me rather like a live grenade, I guess trying to assess whether I could get myself home or not (a 40 minute drive). The NHS have a policy that once cancer is suspected all investigations must be completed within a 2 week period. I had a blood test immediately and they set about trying to get the other appointments I would need. Of course that two week period coincided with my finally getting into schools to do my fieldwork and a week long teaching course I’d been waiting to take. However, they were absolutely brilliant at moving things around to suit me and the boys’ timetable once I’d explained that I was on my own.
The CT scan came first. Horrible laxatives the night before and then another thing inside me while they injected me with assorted things before taking pictures. I also had my period which really added to the comfort of the whole thing I found. It was an all female team though, who I guess are comfortable with all bodily acts as they go about sticking tubes in people’s bums so they were all sympathetic and it got done.
Next came an MRI which I had to fast before (apparently you can take an X-ray through custard though so I lived on that and stock for 24 hours). I followed the instructions in the leaflet and wore clothes with no metal fastenings so I didn’t have to change into a gown. I have no idea how long I was in there, I think it was an hour, but I practiced my yoga breathing and relaxation and actually fell asleep a couple of times only to be jerked awake by them talking to me through the headphones. The only bad moments came when they left the microphone in their booth on by mistake and I could hear them talking, I had a sudden panic that they would say ‘oh god, that’s awful, poor woman’ or something along those lines, but luckily that didn’t happen.
I was, and still am, pretty amazed at the way I manged those couple of weeks. I am a worrier, it’s just what I do, finish worrying about one thing and then onto the next. However, I decided, after having one huge breakdown, that it would be stupid to spend two weeks in a flat panic, I had work to do and children that needed looking after and no time to fall apart. I told myself that I would panic when I knew what I needed to panic about and just got on with it, it’s never worked before but surprisingly it did this time around.
The first appointment I was given to see a someone about the results was at a time I couldn’t make so I was moved to a different surgeon, which turned out to be a good thing as she is absolutely wonderful. The results weren’t. It was bowel cancer, but it was the single tumour and it was caught early (yay hypochondria). However, it needed to be removed which meant open surgery and an illiostomy (don’t know how to spell that, don’t want to look it up), whether that would be a temporary stoma bag or not was in question until the operation due to the location of the tumor, she believed she had room to ‘reconnect everything’ but if it turned out not to be so then I would have to have a permanent stoma (where the upper bowel is pulled through the skin on one side of the belly and the contents of the bowel goes into a bag), the thought of which frankly horrified me and wasn’t something I could even contemplate so I pretty much ignored that part until after the surgery.
The surgery was scheduled for three weeks later, December 10th, and I fit in everything I possibly could and sorting out people to look after the boys for me as it was predicted to be a 6 day minimum stay in hospital. I finished my fieldwork, only one focus group short of my target, taught, marked work, attended Christmas things and took Piggle for his guitar exam (the day before the surgery was one of those horrifically busy work/children/school events convergence that comes a few times a year followed by the laxitives from hell in the evening). I also fit in a visit to a haemotologist due to my low platelets and, once he’d ok’d it, a visit to a local hopsital the day before the operation for an anti-coagulation injection to prevent deep vein thrombosis.
So, off my parents and I trogged on the 10th at o fucking hell this is far too early in the morning, only to spend 45 minutes searching for the new hospital as they apparently haven’t managed to put up many signs for it yet once you get off the A1. It was actually a bonus in a way as I was hugely scared of not waking up from the operation, actually more so than cancer at the time, but as we were late I was rushed right through and into theatre before I had time to think too much or work myself into much of a state.
Hospital was horrible, some great staff some not so, you just can’t recover in those places, drainage bags are awful, the drugs they gave me had odd effects on me, I had to begin to face the stoma bag and learn how to take care of it and I was generally depressed and fed up. I spent the first 3 days basically staring into space and trying to force myself to eat something. The NHS is not good at catering for vegans, this was their best attempt I’ve encountered, but as I just wasn’t hungry (very unusual for me) so a totally plain salad or oddly thick salty soup was not appealing, and I was also hyper aware that I would have to deal with what I did eat up close and personally later, so food just didn’t work for me. Eventually I managed to be able to read a bit again and watched a few tv shows on Netflix (borrowed my Dad’s myfi) but I was still totally wiped out and in pain a lot of the time, even more than 3 or 4 rows on a sock was too much effort.
I came home after 5 days (this past Tuesday) and today is the first day I’ve physically felt a bit better, although paracetamol with a bit of ibuprofen here and there due to the odd side effects of other pain killers doesn’t really cut it and the night before last I slept for a single hour due to being in pain and totally uncomfortable in any position. I hate the stoma bag with a firey passion but it is only temporary, thank every deity, and I will have another smaller operation to reverse it in 4-6 months time. Yesterday I had a District Nurse visit and a Stoma Nurse visit and will see both of them again before Christmas I think. Amazingly they both found my house quite easily.
The result from the removed tumour were due yesterday. The surgeon had said she’d call me about them so I was expecting results over the phone, what I got was someone making an appointment for me to see her on Monday. I don’t know if that is standard practice or bad news so I’m once again trying not to panic after having a small breakdown. They were hopeful that as it had been caught early and there was no spreading that I would not need any further treatment, I won’t know if that’s the case until after the meeting where I’ll find out how aggressive the type of cancer I had/have is.
So, here I am, no idea how bad it is, whether it will come back, how long it will take before I stop looking 5 months pregnant and walk further than from one end of the house to the other or what the new year will bring really. I am taking an interruption from my PhD, currently accepted until 1st March, but like everything else I will have to see what I can manage and when I can manage it and I may have to take a second break for the reversal surgery, or if I do have to have other treatments.
There has never been bowel cancer in my family that anyone can recall. My Great Grandmother died from stomach cancer but there has been none of any kind in either side of my family since then. I had one risk factor (being overweight), I’m 2o years too young, haven’t eaten meat since I was 16, ate a whole foods high fibre mainly organic pretty bloody healthy diet for the 11 years I’ve been vegan and exercised regularly. I had a single symptom, the bleeding, nothing else that would suggest cancer. Knowing my body though, what was normal for it and what felt right and what didn’t was what got me diagnosed so early, the surgeon actually said that they don’t normally see it this early, which hopefully will help. It took me weeks to realise that it could come back, it was just somehow in my head that I’d have the operation and be done with it, so it was a shock to finally understand that this is something I will have to keep an eye on for the rest of my life.
But, I’m here, the tumour is gone, I’m told I’m recovering well and I now have until the 27th to relax and rest as the boys are with their Dad for Christmas this year (luckily it was his year so we didn’t have to change anything). My sister is here looking after me and things and I’ll just have ot see what happens next.
As I said, I hope that sometime in the future this might help someone looking for stories about people who have bowel cancer and that if they are contemplating being tested they have it done no matter what they’re told. Know your body people, that’s the basic message I have for you, and push if you feel something isn’t right no matter what the ‘experts’ are telling you, be the expert on yourself.
If I don’t make it back to the blog before Christmas to show you my last few makes I hope you and yours have a pleasant one, and here’s to 2016 being bigger and better for everyone in every way.