Disclaimer: Tubthumping is by Chumbawumba
Ok. So an eventful few months. To say the least.
After the breast oncologist saw me, I was told to mention some calcification around my bladder (which was possibly the reason I was having trouble passing water) to my colitis specialist when I saw him. I did, and the fact that my tummy had been a bit funny for a month or so. He immediately referred me for a flexisig (camera/biopsy) the next week. Two days later I was asked to attend the clinic the following day. I crossed my fingers the the consultant just wanted me to start more medication for the colitis as I'd been taken off some in January. So my husband and I went along quite cheerfully. Got called in to see a Nurse also sitting in the room (deja vu, anyone?). The consultant then broke the news; there was a malignant ulceration by my rectum (horrible word, that). Literally a year and a week after my breast cancer diagnosis. Marvellous.
My immediate reaction was "There goes our holiday next month!" followed by "Sod that, I'm not doing it all again! I've just gone back to work full time!" We got taken in to a room by the nurse, and given leaflets etc etc and a plan- stoma, chemo, radiotherapy, tests to see how it's all worked. Then was the fun task of telling people. Joyous.
The following day, my in-laws came down for the weekend, which was just what I needed. A day out in the sun followed by a barbeque in the back garden (after my initial worries about my husband and father-in-law being let loose with fire were relieved slightly by my mother-in-law keeping an eye on them). We sat outside until 10 that evening, listening to music and have a couple of glasses of rose. It was a wonderfully lovely, peaceful, sociable evening. Just what I needed.
I went back to work the following week as I didn't want to just sit around moping waiting for my operation date. Which, believe it or not, was the week before we were due to go on holiday to France with my in laws. Work, again, were wonderful. Just letting me do as much or as little as I could, and really looking after me. One colleague in particular has been great, having also had an ileostomy, giving me helpful hints and tips on coping. I worked up until the Saturday before my op, as my in laws were coming down again to do our garden for us. That last day was an odd one. I ended up going home early as I had got myself into a state. My legs were aching (something I've had for the best part of a year) so I couldn't get comfortable and everything just hit me; I ended up sobbing on my work-mum's shoulder. So they made me tea (always a good thing for me) and sent me home to curl up with hubs in front of Come Dine With Me.
My operation was the following Thursday. All went well and I was eating the next day. I had to stay in for just over a week so that the stoma nurses could be sure I coped with it on my own. While I was in there, I was anxious to get the weeing situation sorted. The nurses were repeatedly requesting the Urology doctors to come and see me. One doctor (not a specialist) who came to see me (who was all of 20) helpfully told me to relax. Wow. Why hadn't I thought of that for four months??? It took me threatening to make an official complaint for them to come to see me. I felt I should be prioritised given that I was die to start chemotherapy and was worrying about infections. I was then referred to the specialist nurse who prescribed self catherisation. Not fun but does the job when necessary.
The day I was due to go home, a team of urologists came to see me, casually mentioning that I should get my breast expander changed so that they could do an MRI and check for MS. Great. Cheers. After they had gone, I went into the bathroom to change my stoma (named Princess Consuela- 'Friends' fans should get it!) and found bile (although I didn't know it at the time) coming out. I immediately burst into tears until one of the lovely ward nurses came in and reassured me that bile was normal in the mornings when you haven't eaten. She was furious about what the Dr had said, without having a nurse present, and said I would have displayed more symptoms. It's most likely to be where the tumour is taking up space. She complained to the Head Nurse and the surgeon who had done the op came round and reiterated the point, and said I could go home. Yay!! It had been a very emotional week (one of the student nurses had accidently put my cuddly toy given to me by my best friend in the laundry with the bedding, which had upset me a lot).
I got used to having the stoma, and looking after it myself. It helped having a designated Stoma nurse, who had given me her mobile number and visited weekly, initially, to check up on me. I saw my new oncologist who went over everything and said I should start chemo within the next couple of weeks. I soon got given a date for Friday of the following week.
However, on the Monday, disaster struck. I had had company all day but when I was sat on my own, I felt something untoward in my stoma bag. So I started to take it off. I thought my insides were falling out and went into full on panic mode. I couldn't get hold of my nurse as she was with a patient, and I couldn't get hold of my husband. He rang me back about 10 minutes later and told me to ring 999, who sent an ambulance round. They took me to Worthing A&E (despite me asking for Brighton) and my husband and mum met me there. While I was in the ambulance, my nurse rang me back and said it sounded like a prolapse which, while fairly uncommon, wasn't unheard of and not a disaster. After spending 6 hrs in A&E, where all they did was poke about a bit and give me an ECG, I got sent home and told to come back if I was ill.
I spent the next day on the sofa once my nurse came to see me and check everything was as ok as it could be. However, 1 0'clock the following morning, I working up really not feeling well and started being sick. So we rang 111 who advised A&E again. Luckily my mum was staying and was able to take us to Brighton, who were brilliant. I got seen very quickly- given IV anti sickness drugs and morphine (which I repeatedly stated was awesome as I immediately felt so much better and went to sleep). I was given a saline solution for dehydration (which explained the throwing up), an X-Ray to check for blockages and allowed to sleep. I went home about 4 the following afternoon with reassurances that it wouldn't interfere with starting chemo. In fact, as the bag had to be changed a couple of times due to leakages, my husband saw it and thought it all looked significantly smaller if back to normal.
I was, however, not happy about being by myself in the immediate future so we stayed with my mum for the rest of the week while my husband was at work. Chemo went ahead as planned, and I had a PICC line put in the day before as part of the chemo is a 48 hour infusion. I've just had my second one so, fingers crossed, all is going to plan.
There have been some nice things too; a family Barbeque at my husband's Grandma's; my aunt and cousins visiting from Australia; my lovely lovely friends sending me a foot spa and smellies to go with it; visits, phone calls and messages from lots of lovely people.
I don't know how it's going to pan out (you never do with these things) but I'm trying to stay positive (helped by further sessions with the Macmillan Councillor) hence the Blog title. Tubthumping- I get knocked down, but I get up again. And they're never going to keep me down.
