As many of you know, my old hospital gave me just "3-4 months" in May 2007, so I should have been pushing up my holly-tree a minimum of ten months ago. Not only am I alive, but I am very much alive! As they said there was nothing else that they could do for me (except treat peri-terminal conditions), I have had no medical treatment at all now for about 16 months.
What's kept me going? Probably that won't be understood in my lifetime, and my own theories are just that, but the biggest problems as I found them were:
(1) STRESS. This will come at you from the expected: your own mortality, mirrored stress from family and friends at the news, dealings with DSS, loss of your employment - providing you enjoyed it!- and worries about finances, ...and from UNexpected sources (read my blog "Birthday from Hell" for that very personal one!), my laptop crashing, the frontroom windowsill disintegrating - as of course Life still goes on throwing spanners into your works same as ever.
(2) LONELINESS. I lost three part-time jobs where I was working with three different teams, one of which was like a family, and meeting and talking to hundreds of people every week. I was got rid of when I was told I was terminal (Labour-controlled City Council: I worked for Museums and Galleries) and hasve recently been refused part-time voluntary work as a "Health and safety risk". The only people I saw when I was on treatment were two taxi-drivers (could be a very negative experience if a misogynist racist arrived at the gate), the radiotherapy team, other equally unwell people in the waitingroom, and many hours later my partner. Our phone bill rocketted (had no Internet access then).
(3) TERROR. Fears for how and where The End is going to take place. I was warned by the in-hospital MacMillan nurse that there are insufficent beds in the hospice, and it is unlikely that I shall get a place there when the time comes!
(4) EMPTIED DIARY. Suddenly having one's diary cleared sounds like a dream when you're working 8 days in a row, and the 9th day is the day it pours it down - but when it's forced on you suddenly, unexpectedly, for the rest of your life - which you've been warned will be months....
(5) PHYSICAL HEALTH. I had asked, and was told that I shall die of kidney failure, after suffering such conditions as Hypercalcaemia. The cancer has spread into my lymph nodes and after the second lot of treatment, has until now just been left to run riot, stopping off pretty much anywhere it pleased on the way.
How I coped:
(1) STRESS. This really over-arcs all the other categories. My GP prescribes me 2mg of Lorazepam. I take this at night as it prevents nightmares and gives me a good night's sleep. Even for healthy people, this is important. I really have to deal with almost everything in this household as my partner is pretty pathetic at dealing with anything official, but I have now accepted that nagging him isn't going to change anything. He is who he is, and is going to have to sort himself out, and his own finances, afterwards. I just get on with the official things as soon as possible, then reward myself with a treat. I try to avoid stressful situations and unpleasant people. Just walk away. I don't care what they think about me. DO THINGS: don't give yourself time to brood, or the feeling that you've achieved nothing meaningful today (or in your life!). Whether it's something delightful or something domestic. Try to take some exercise, as this releases Endorphins (happy chemicals) into our brains. I find walking in the countryside and swimming my favourite physical activities. Do NOT take to drink. Alcohol contains a lot of really nasty chemicals that don't do healthy people any good. You'll feel like crap next morning and be convinced that it's some significant development in your cancer, not just a hangover. Also, like the old joke says, "I drink to drown my sorrows - but they've learned to swim!"
(2) LONELINESS. I did quite well after my terminal diagnosis, as everyone thought that it was such a short time, and made a huge effort to come and take me out, come round and see me. A few people have dropped off, but I have more than made up for those who have moved on with their lives (as you will have to watch everyone else doing!) by getting online and joining What Now - yay! I have made a few real - I was automatically going to say "lasting": whoops! - friendships, and met such interesting people AND THEY UNDERSTAND ABOUT EVERYTHING! As I was booted out of paid employment, I went back to what my degree subject was - and re-became an artist. I also do a lot of writing. Through comtemporary art, I see a lot of old friends and also meet new people. I "do" Facebook, and another alumni networking site. I get out and about, go to things, try new things, meet people. I have to remember though to "pull punches" and not just blurt out what's wrong with me: I have come to terms with it, but it's a shock to people who have no idea (the chemo I had didn't make me lose my long hair!). I go to Cultural Events - which I often didn't have time for, or was too tired to go to when working. Try anything, go anywhere - give things a go.
(3) TERROR. I've worked as a researcher, so it's second nature to me to find out what I can about both my illness and especially about dying. See my "Natural Death Handbook" blog for that avenue. Knowlegde makes me stronger, as I know the Best Case Scenario and can try to engineer that as far as possible. There is also Denial: although there are people who have no personal experience of cancer who are eager to throw "in denial" at others as an insult, Denial is up there officially as a "coping mechanism for terror". You don't have to think about the horrible things all the time. In fact, think about them as little as possible - or you're back in the stress hamster-wheel. Displacement activities also have their part here. I remember feeling really frightened one day soon after the terminal diagnosis and recognised the symptoms of serious depression looming: a friend took us out, to one of my favourite places in Derbyshire. I still felt depressed. Bizarrely, it vanished whilst walking round a supermarket: conclusion: don't overlook unusual (for you) activities - in my case "Popular culture"! One of my most-commented upon photo albums on Facebook has been when I smuggled my camera into the cash and carry! If you enjoy something, it's good for you (apart from the alcohol and nicotine, anyway).
(4) EMPTIED DIARY. This is not just about being unemployed, but very much about Who We Are: "What do you do then?" I am lucky. I can now say "Artist and writer". I also have always had a long string of interests, from walking, reading, wildlife gardening, collecting...This is something that almost everyone is going to have to face one day: when you retire. Who will you be then? Are we just defined by our jobs? The re-filling of my diary - so full that some healthy people have said, "We can't keep up with you" - felt like a major part of coping mechanism. Life is for Living. I am doing significant things, therefore I am! It has also been a salutory lesson for one friend, who has not only me, but another close friend who recently died. It has inspired her to hand in her notice for a job she found increasingly to be not about what it had begun as, and she's going to do all the things she always wanted to.
(5) PHYSICAL HEALTH. From the time when the effects of the chemo started to wear off and I could go back to eating a normal diet, I have overhauled what we eat. I almost never drink alcohol (at first I really missed it, now not at all, same with salt), never eat meat, eat plenty of fresh steamed or raw vegetables, salad ingredients (my salads can contain almost anything, see my profile for a picture of one of my meals), wholemeal bread (bought a breadmaker for Xmas) as a visit to a windmill confirmed that mass-produced white flour has been bleached, had chalk added and had all the goodness taken out. We do eat some fish - oily fish, mackerel, salmon, tuna. I don't eat prawns anymore, because I heard they are high in cholesterol but also because I am concerned about overfishing and the food chain. We eat a lot of fruit - I love fruit, and am just finishing the last of the raspberries and redcurrants from our garden. We eat a lot of nuts and seeds. I have changed my multiple cups of ordinary tea to a pot of green tea, and lots of fruit teas (again another big struggle at the start!). I added quinoa (pronounced keenwah) which is actually a seed and contains not only protein but also omega 3 and 6. We eat wholemeal pasta, brown rice, couscous. I have cut down on cheese (eat some still but go for Quark), butter ( I use olive oil or our Carotina palm oil), and restrict my love of ice-cream to a tiny tub of locally produced stuff as an occasional treat, and have Greek yoghurt - or nothing with fruit, instead. Sometimesd ahev shiitake mushrooms, seaweed, sprouted seeds. I drink lots of water and diluted natural fruit juices, and our cooking is very juicy (eg passata, stocks made from Marmite/Vegemite). I almost never eat chocolate - in fact find it sickly when I do. I feel that doing the best I can with diet is a contribution I can make, not only for my health, but for my partner's. Something somewhere must be doing good, because i have had no medical treatment whatsoever since March 2007! I do take a multivitamin tablet when I remember to. I try to get exercise - and it's not easy, ironically, when you don't have a car, as you spend a lot of energy getting to and between forms of public transport to try to get to somewhere worth walking. I also go swimming, although I know that swimmingpools are said to be pullullating with germs so this isn't for everyone! It always makes me feel good, and exercises parts of me not otherwise exercisable nowadays because of the tumours. I truly believe that physical health is closely linked to stress and thus everything here is part of a bigger pattern.
Right, I've exhausted this month's blogging-lust. That's your lot - except to give you some breaking news. Whilst I was typing this I had a call - from partner's sister. Those of you who have followed me with "Birthday from Hell" will realise this is a momentous step. That's another piece of advice I have for those of us terminal - indeed anyone, life is too short to hold grudges and not forgive people. Learn to laugh about disasters....
With lots of love - and still quite a bit of energy xxxx Penny
PS Just changed the blog title as I felt it might be off-putting opr distressing!
