I have never done anything like this before, how many times have people started like that? Well I've been through a bit of an episode in my life and I know I need to do something. Get pills from the doctor, or talk to someone, just to help me through it. Only I'm not that kind of person, don't like the idea of pills, and hate talking face to face to someone I don't know about really personal things. I'm a private person (funny I know I'm now writing a blog for anyone to see, sure that's really private Maxine!), no I'm a really private person and I've already had that area of my personality poked enough as it is so I thought I'd try this. Because I need to get stuff out of my system and this seemed an obvious release, doesn't matter if anyone ever reads it or not, it's better off out of my head than in!
Three weeks ago I had major abdominal surgery, due to complications because of a previous surgery (the week earlier), so now I'm at home recovering physically, but with a lot of anger and upset inside my head that I felt I should do something before I start throwing the crockery (I do that sort of thing). Maybe I should really start with the short version of the last couple of years, just so we all know what we're dealing with.
I'm 41 years old, happily married with two sons, living a comfortable life in a village on the edge of the West Midlands (England, now that's a hopeful entry thinking that was required). I was, in the summer of 2008, working as a riding instructor at a local riding school teaching mainly children, but sometimes adults, how to ride, and care for horses. When I was struck by an epiphany (it wasn't painful, but it was life changing), I really should become a school teacher! All it took was one Friday morning, a lot of conversations with my co-workers, and the next thing you know I'd given up my job, enrolled at the local Uni on a history degree course and become a full time student. If it shocked people, they didn't really show it, and off I went on my new career path. It wasn't easy, I found getting into the assignments difficult, and didn't get good marks for the first few I handed in, but I persevered and eventually by the end of the first year had a few A's under my belt, and spent the next couple of months (they break up from Uni really early) eager to resume my studies in my second year, knowing I had made the right decision.
Six weeks into my second year at Uni, I awoke one Saturday morning with terrible stomach pains, I mean lying on the floor unable to move kind of pains! So an ambulance was called and off I went to the local hospital. With morphine on board and the obvious ruled out (appendicitis and ectopic pregnancy) I went up to one of the general wards. I wasn't considered an emergency, but I have no clue what they thought was wrong, they put me on antibiotics (via a drip) and nil by mouth until they could get round to giving me a CT scan, they didn't sound too worried really, so I wasn't. CT scans are only done at weekends in an emergency, and on Monday I was bumped down the list by more urgent cases, all easing my concerns.
Maxines 1st lesson - Never ever use logic to assume anything!
Tuesday came, and horrible drinks were given to me, one very thick and gloopy, to enable them to examine my insides properly on the scan. If you've ever witnessed hospital staff change gear, it's quite a picture. Within an hour of my scan I had about 8 medical staff around my bed, and a closed curtain (because that gives you privacy), I had perforated my bowel, I needed major surgery, I was going to have to have a stoma (colostomy), poo into a bag. Now that was a bit of a shocker!
Maxines silliest question - "Where do you bend?", by a stoma nurse armed with a permanent marker pen.
So I frightened the living daylights out of my family, ended up having emergency surgery (which is funny when you've been hanging around in a hospital for a few days), and a few hours later was delivered to HDU. I was feeling pretty crap, relying heavily on my morphine pump but incredibly glad to be alive. My recovery went well, and 8 days later I went home, with the provisional diagnosis of acute diverticulitis (of which I'd never heard), and a change in lifestyle to come to terms with, living with a stoma. With consultants comment of , "we have to send it to histology just in case, but it's bound to be nothing", not even registering I was glad to be home.
Maxines 2nd lesson - Always listen to consultants comments.
I recovered at home really well, I was keen to get back to my studies, after this strange blip in my life, and 6 weeks later, on my way to a follow up appointment. I called in at the Uni library (they call it a learning centre, but I spotted all the books), and collected books so that I could do the assignments I'd had to put off due to being ill. I didn't even get my husband to come to the hospital I took my sister, I was expecting a "you are doing really well" bit of a pat on the back, and an away you go with the rest of your life, kind of appointment. I was greeted by my consultant asking me where my husband was, and realised there were two nurses in the room, which seemed like overkill! What were they expecting? That I guess was a woman who fell apart when she was told that what caused the perforation was a tumour, and a nasty one, that I was being referred to the oncology department and was going to have to undergo some kind of chemotherapy treatment for bowel cancer.
Wow, I never expected that, nor did the consultant, or the rest of my family and friends. By the end of 2009 I had my first chemotherapy treatment sorted out, and began taking Capecitabine (Xeloda) tablets twice a day for two weeks then one week off, take 5 in the morning and 4 at night, or was it the other way around?
Maxines oddest instruction - Try not to touch the tablets.
At the end of my third week ( the one where I didn't take the tablets) I was back in hospital again, neutropenic (low neutrophil count), unable to fight infections, I had a c-diff infection. OK a week later I was out. So a slight change in my drugs regime, I was put onto weekly intravenous injections of 5-FU, 30 weeks of it. With a small break in the middle when they adjusted my dose, I was sensitive to the drug, which means that I got pretty much all the worst side effects, when some people get none at all, I'm not complaining, it rarely makes your hair fall out, and mine went limp but stayed in, lost my eyebrows and eyelashes tho, that was odd. Needless to say I took a leave of absence from Uni, and I got someone to take my books back to the library, and just got through it. You get fed up, but you laugh a lot, cancer nurses are an incredibly special breed, they have the best senses of humour, I rarely left the ward sad, but still I won't lie, 30 weeks is a long time.
I went back to Uni, September 2010, I hadn't quite finished my chemo treatment, but I only had a few weeks left, I just didn't want to lose any more time. Then by December I was booked in to have a CT scan and a colonoscopy, all to give me the all clear, as all my blood test throughout had shown no signs of any cancer cells milling around.
Please see Maxines 1st lesson.
Then at my colonoscopy, again I took my sister, she is now refusing to come to appointments with me. "There was something on your liver, apparent on your CT scan, it needs investigating so you need to go for an ultra sound, to confirm diagnosis". It was a very scary few weeks, I can tell you, I couldn't do my assignments, couldn't think about Christmas, I was terrified it had spread and I was facing a far more serious prognosis. No, again I have to be different, the thing on my liver was there on my 1st CT scan and considered an innocuous bunch of cells, and certainly had not altered in the 12 months between scans so was considered to be nothing to worry about, go and enjoy the festivities.
Maxines favourite comment - you have a perfectly healthy liver. At 41 that's good to hear. "Lets give my healthy liver a workout this evening!"
So we enter the new year 2011, I'm officially cancer free, and have quite a bit of Uni work to catch up on, and the prospect of, in a few months time, having my Hartmanns procedure reversed and getting rid of my stoma. What a good year! We have private medical insurance through my husbands work, so decided to use it for the reversal operation, it would be the same consultant but meant we could pick a date for the op and not mess up another year of my studies, how perfect. So it was all planned for the 9th July, I was really nervous but filled my time with volunteering at the local secondary school, shadowing the head of History there. I cannot tell you how much I enjoyed it, I left every day I went with a smile on my face, even surer now that the classroom was where I wanted to be, and the sooner the better, I even started looking into doing a GTP, where you are working in a school whilst becoming a qualified teacher, instead of spending a fourth year at Uni doing a PGCE.
Maxines 3rd lesson - Do not make plans.
The 9th July (Saturday) came around and into the local private hospital I went, my operation went well, and by Monday I was up and about, if only in my room, having visitors and doing really well, I was improving day by day, and my bowel was working fine, and my obs were all ok so on the Thursday I went home. I had a lot of healing to do , but I was ready for the world without a stoma, ready to feel like me again, and to put the whole past chunk of mess behind me. By Friday afternoon I was back in hospital, with an obvious fever, but, they weren't worried, it was probably a urinary infection, they are so common after operations, my belly was soft, the consultant really wasn't concerned. By Saturday evening I was back at the NHS hospital having a CT scan, I had an anastomic leak, the join in my bowel hadn't knitted at all, I was back into surgery, more major this time, with a severe infection, being given a stoma again.
I awoke in HDU, I had a central line, an arterial line, 2 drains in my stomach and one in my rectum, a catheter, an NG tube and a PCA (for the morphine), oh boy did I feel like shit! So here I am three weeks later, I'm angry and upset, I've been through 2 major operation in just one week, only to end up back exactly where I was to start with, but incredibly weak and facing a long recovery. I'm physically getting better, although it's a slow process, but I'm so cross, I have nowhere to go with it. I know, I should be glad I'm alive, and I am, I really am, but right now it doesn't feel very fair, petty words but that's how I feel. Tomorrow I may feel different, but today I feel stroppy about it, so I will come back and chunter if I feel like it, or tell you how brilliant it has been, or cry, or somewhere else in between.
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