Five years ago I was staring out of a hospital window having just had mastectomy the day before – I would have preferred to have been here staring at the sea, but hey. It was quite a journey. I had to get to the hospital at 7.30am although I didn’t actually go to surgery until 5pm. Luckily the stress of it all brought on a bout of cystitis so I felt great. Add to this the fact there was no bed for me so I sat around semi-naked in a hospital gown with all my stuff in bags for most of the day. Things did get better when they got me a pre-med and let me lie down in an office for a bit. The weirdest aspect of the day was the fact that a chirpy – in a faintly psychotic kind of way – work experience girl accompanied me throughout the process. I am not kidding she was doing work experience. She turned up first thing, and was bopping about as I changed into a hospital gown in the waiting room; she popped up smiling when the surgeon came to write on my chest which breast to cut off; she was there chattering about doing her Duke of Edinburgh award as I waited on a trolley outside the theatre doors and I swear she was there in recovery beaming with the whole excitement of shadowing a surgeon.
After surgery,I came round full of drugs, happy as – well happy as the work experience girl. On the way back to the ward I waved to everyone I passed from my trolley. I was however starving. I eat regularly, I don’t miss meals and I often need to eat inbetween meals. I hadn’t eaten since the night before – I was very hungry. As I sat in bed I babbled on to James about all the food he had to bring me the next day: 5 cherries, a plum, some mirin and tamari sauce, more tofu, a biscuit, carrots (4), some grapes (seedless and white), chocolate (Green and Blacks) sesame seeds, organic yoghurt, home made soup left prepared in the freezer – you get the idea. All of this was a revelation to me, I can’t remember much of it, I just remember James turning up to the hospital the next day with bottles of mirin, sesame oil and hard boiled eggs and thinking why has he brought all this stuff? There are no private rooms in UK hospitals – there are only small bays in larger wards. When I woke up in the morning oblivious to my ramblings the night before, the lovely woman opposite came over with some fruit – apparently everyone had been very entertained by the very hungry woman in the corner who had very particular dietary requirements.
Anyway the upside of having 7 major operations and 1 minor one over the last 5 years is that I have got, even though I say so myself, reasonably good at ‘doing’ operations. So here is my essential guide to surgery ….
Adequate pain relief after major surgery is essential. Morphine is great; paracetemol, especially when proffered by a nun who tells you the pain will eventually pass, is not. A pre-med is not only better for me, but for people around me! I have been refused a pre-med at times and told I can’t have one as it will make me feel a bit rough after the surgery – uh duh, I am going to be feeling rubbish anyway so I might as well feel OK in advance. Surgical menopause only starts once the morphine has worn off. I came round from my bilateral salpingo-oophorectomy feeling great, not in much pain and thinking this menopause malarcky isn’t too bad – and then the next day the morphine wore off and three years later the hot flushes still keep me awake at night and are more than inconvenient during the day.
Don’t ever ever let anyone flush out a canula with saline if they think they haven’t inserted it properly. If you flush a properly inserted canula out with saline, this is fine, if it isn’t in properly, it is excruciating. Advice for medical people: do not use a saline flush as a diagnostic tool to determine whether the canula is in properly. If you think it has not been properly inserted, try again somewhere else and then go home and practice on your self until you can do it competently and without causing too much pain. I know to become good at something we all have to practice, but how about medical professionals practice inserting canulas and taking blood from each other and not on me. And don’t get me started on the subject of drains – I have had 14 of these in me and really think that anyone who is going to remove a drain as part of their job should have one inserted and then removed so they know what it feels like.
Hospital food is revolting so make sure you have something tasty to eat after the operation. It doesn’t need to be a three-course meal and it probably shouldn’t be a weird tofu, nut and sesame combination in a Tupperware that you are only eating because you have suddenly decided to give up dairy, and will only drink strange juices and distilled water in a futile attempt to gain a meager modicum of control of your life. Mango works fine for me. I am not mocking the dietary choices people make following diagnosis: I gave up dairy for a year and only drank distilled water for 2 years after finding out I had cancer, but I do also realise now that I got cancer in the first place because I have rubbish genes and not because I liked cheese or drank tap water. I currently refuse to drink bottled water as it is a rip off and I want to keep a flock of milking ewes so I can make my very own cheese as I reckon being a cheese-maker is not only blessed but involves eating a lot of cheese! That being said I haven’t thrown out my water distiller or juicer because should the cancer come back I may well start drinking special water again in a consoling, but ultimately futile attempt to regain a modicum of agency over my life. No-one needs mirin in hospital – ever. Medical staff will mock you if you eat healthy food – there is no point gaping at them with incredulity or talking to them about the benefits of a healthy diet – just deal with it – they all seem to live on pot noodles.You can’t read anything serious after an operation. Why I thought it would be a good idea to bring a selection of philosophy books (not one, but a selection!) to hospital with me is beyond me. In fact I generally can’t read anything for quite some time after surgery, my brain turns to mush. It is called sick leave because you can’t work, so don’t.
If you have very low blood pressure don’t sit on the edge of the bed immediately after surgery even if a nurse or doctor asks you to – you will fall off. Don’t let them then try and pretend to the surgeon that the bruising you have is because you tried to get out of bed yourself – it starts a precedent that should be avoided!
Say goodbye to your dignity. You are going to be talked at and about, poked and prodded, stared and gawped at, and this will mainly happen while you are semi-naked in front of an ever changing group of strangers. Although sometimes they will offer you a modesty towel to cover one of your breasts while they inject radioactive dye into the other you will still be on a trolley in a corridor with random people coming and going.
Take a teapot (and cup and tea). It makes everything much better to drink nice tea from a proper cup when you want it rather than awful stewed hospital tea from a plastic cup when they decide it is time for a drink.
You might think you can come home and carry on with your life a few days after major surgery, but this is a delusion induced by the excitement of a successful escape from hospital. If you do get on a bus, go out for lunch and a little walk, you will feel unbelievable shit after a very short time. Actually it took me about 5 operations before I started to accept this. Thank you Kathy for convincing me I wasn’t dying and that I had just overdone it!
Today and tomorrow two friends are having major surgeries. I am thinking of them, sending them all my love and knowing that very soon they won’t be looking out of the hospital window wondering about the people who are getting on with life without a care in the world, but like me they will be back on the outside, at home, busy with their lives again.
N.B. the photos are of the beach at Bawdsey Ferry. I took them back in August 2009 when I was back on the outside again.