A lovely surgeon came and had serious talk to me, she was kind but to the point. She explained the ct scan showed nothing untoward, but because of the metalwork in my back the scan had a great deal of glare on it and much couldn't be seen (hmmm this must have been the case with every ct scan I've had since the beginning!) so she proposed to open me up from sternum to pubis and have a rummage. Depending on what she found depended on what she would/could do. There was a good chance, she said, that she'd just have to sew me up again and that would be that, I'd be shuffling off fairly quickly. But if it was possible she would try and sort out the problem and the most likely outcome, if she could do this, was an ileostomy. She also pointed out that a major op like this could cause the cancer to kick off and become super aggressive. So when? I asked, tomorrow first thing don't eat after supper.
So down I went next morning, leaving my wonderful kids (I include my daughter's boyfriend in this as he proved to be the son I never had) waiting and worrying. They told me afterwards that when it went passed the two hour mark they heaved a sigh of relief because they thought, rightly, if it was just a stitch up job (haha) I'd be out by then. An aside, those of you who remember the back op from hell will remember I was seriously allergic to one of the GA drugs. In the little room outside theatre where they knock you out I mentioned this fact to the anaesthetist, just checking but not really worrying because I had told the surgeon and anyone else that passed by and was told it was in big red letters on my notes. She looked mightily alarmed. Her hand stopped mid way between us and the colour drained from her face. In a voice as pale as her face she asked me if I knew what I was NOT allergic to. I have been told this but her sudden panic made my mind go blank. Eh ... I bet my daughter knows, I said, and they tested me in Southampton hospital so they will know too! My surgeon set off at a run to find daughter (try the cafe!) and a chap in scrubs shot off to phone Southampton ... I sat looking at the anaesthetist and calculating the risk I'd be pushing up daisies by the end of the week and she looked at me with a sickly smile that failed miserably to fill me with any kind of confidence. Minutes passed, weeks passed or at least it felt like it when suddenly my daughter burst into the room shouting the drug, moments later phonecall-man burst through from theatre shouting the same thing, I lay down and wondered about an afterlife.
When I woke up, slowly and painfully, it felt like I'd been steam-roller. There wasn't a spot that didn't hurt even wriggling my toes. I lay in a world of pain when an angel approached and put a device with a button in my aching hand. She whisper sweetly in my ear to press the button if I was in pain. A self administering morphine pump! I pressed that button continuously, sadly it only worked once every five minutes regardless of button pushing, but I learned that it registers the amount of button presses and the morphine angels then come and up the dose because more is obviously needed!
I don't know how long the operation was, but it was very late so the recovery nurse-angel said she'd let the kids in one by one to say goodnight. What little stars they are. They each held my free, non button-pressing hand and kissed me good night. They looked tired but relieved and oh so wonderful. I lay there wondering about the meaning of life and how lucky I was regardless of where I was and why. I gave not one thought to what might have been done to me. It never entered my head.
Slowly I became aware that the very caring and wonderful recovery nurse-Angel was having a quiet but heated argument on the phone. She banged the phone down noiselessly and came to me and said they were moving me onto the ward because it was the last bed and they had refused to save it for me. In her opinion I was not well enough to leave recovery but on the other hand she couldn't risk the bed going! Such is the reality of underfunded hospitals. It was 3am.
To cut a long story short the cancer had penetrated my small bowel and was merrily making its way along it. The Surgeon cut out the infected part and poked the end of what was left of my small intestine (not much) through a hole in my tummy. When it dawned on me to have a look see it was revolting. They kept me nailed to the bed forever, refusing to let me get up and walk not even to the loo! I had tubes coming out of me and various bags filling up with various bodily fluids including a drain into which I swear my life's blood was rapidly decanting. One day of complete fedupness I got out of bed, pinched the zimmer from the woman next door hung my various assorted bags on it and trundle to the nurses desk. I demanded, because I was suffering acute rudeness brought on by the aforementioned fedupness, that as many of these appendages and tubes be removed and I stood there slightly swaying until they agreed. They pointed out I would then have to walk to the bathroom or use a commode, both involving getting out of bed. Hooray I said and skipped (in my head) back to bed. Things were duly removed and I got out of bed and had a potter without the zimmer to frowning nurses and grinning patients. The next day I had a walk down the ward and bumped into my surgeon. She looked suitably alarmed but I told her I felt fine and wanted to go home. The kids were brilliant and visited everyday and friends and family made long journeys to see me but it was a 12 bed ward with minimal staff and whilst the care I received was extremely good I'd had enough. The staff were not convinced and we compromised with me going to the hospice to recuperate a bit more. 10 days there which was like a 5* hotel, no wonder people are dying to get in, and then they let me home. The summer had gone. It was Autumn. The op was a success and I felt well if not a bit weak. I started to recover.
Then one day I was walking along, into the hospital as it happens, and from nowhere I couldn't breath. My daughter grabbed a wheelchair and we proceeded to my appointment. I needed the chair to get back to the car but then in the car on the way home I seemed to recover. It became apparent very quickly that I could only breath if I didn't move, at all. My GP decided it must be anaemia because I was pale (and interesting looking?) but the blood test came back with the highest red blood cell count I think I've ever had. It did show though that my liver enzymes were array and that my cancer blood marker was rapidly rising. So then it was decided that perhaps I had a pulmonary embolism so back into hospital I went. I had a chest X-ray and chest ct scan and an ecg for good measure. All normal but I still couldn't breath. A few days later I saw my oncologist she admitted me back into hospital, because a new blood test showed the ca blood marker had doubled in a week. She felt that the liver problems and the breathing plus now this new blood test showed my kidneys weren't working properly, were all linked to the sudden aggressive progression of the cancer, all due to the life saving operation. (Now that's a bugger). I was dispatched forthwith to the acute medical unit to await a bed. It was here a jolly doctor told me that I probably had between 2 weeks and 2 months. (I'm in the second month). They don't call me Lazarus for nothing though. They bunged up some iv fluids to try and help my kidneys and lo after a day they were back to normal. They gave me oxygen and after 4 or 5 days I was breathing normally. They did another ct scan of chest, abdo and pelvis and none of my major organs were harbouring cancer. In fact the cancer itself although more widespread was again not interfering with anything and there were no huge tumours. Just the numbers were frighteningly high and rising. A couple of days later though, the liver numbers stopped going up so I was sent for a liver ultrasound and they couldn't find anything wrong with it! Result. Just the cancer markers continued to rise alarmingly but I felt better and I went home. I left the ward and walked to the car, breathing all the way.
I decided that if it was possibIe I would have more chemo and see if I could head this off once more. I saw my oncologist and although I thought I was fine she refused further iv chemo saying it would kill me but did agree to refer me for a trial involving oral chemo. This seemed the best I was going to get. The status quo remained for about two weeks. My oldest daughter who had come home for a month in July returned to Australia it was the end of September but the sun was shining. The next day my wonderful friends A and G came over from Canada and it was during their stay my breathing started to go down hill again, by the time they left I could no longer walk.
In the week that followed a wheelchair was delivered, then an oxygen generator and cylinders for going out (ha!) and upstairs; and carers arranged to come in twice a day to feed me, get me out of bed, but me back to bed etc. Life became deathly dull. A nurse arrived one day with a 'just in case' box containing injectable morphine and other end of life drugs. Visiting health care professionals started trying to persuade me to have a hospital bed, I felt written off and an expectation to hurry up and die. I asked my lovely daughter to come back from Australia. Then about a week ago I suddenly found I could make it to the bathroom without oxygen. And then I could get downstairs on my own. Bizarrely although now extremely weak (no muscles left and skinny as a skinny thing) I can (mostly) breath on my own and also move! On Monday the appointment with the trial oncologist took place and my daughter took the day out of uni to accompany me. The consultant was brilliant but she explained the trial would not be starting for at least four weeks. She said that it was her gut feeling that I should start some treatment asap and if I were her I'd see my oncologist extremely quickly. I phoned my oncologist's secretary on the way home and have an appointment with her next Wednesday. My other daughter arrived from Australia the next day. I started to feel hope that maybe there was something that could be done, and utter dread that I'd left it too late. I can feel the tumours in my abdomen now and my blood markers are probably the highest they've ever been. The palliative care team want me to bow out gracefully and enjoy the time I have left without making myself worse with treatment, but do you know what? It's not in my nature. I'd rather go down fighting. So please, if you've read so far, wish me luck!
