March - July 2013

How to live (as) if you know you're going to die

These are notes for a book, or long essay depending on how much time I have. So why would anyone write a book? In all honesty, I read a lot of self help books, and I have thought to myself, 'this person doesn't have some magic answer. This person has found a way to say sensibly what I would tell my children, or my friends'. I'm a sensible down to earth person, maybe I can do the same.

We all know we're going to die sometime, but I found out in October 2011 that I will be dying, in all likelihood, before my time. Once the panic died down: the hospital appointments and the treatments, I was left hairless (which saves a lot of time shaving your legs; how many hours have I wasted doing that in my life!) thinking, 'What next?' I had some time, hopefully lots of time, before it would all come back, but what was I going to do with it? I wanted a book called 'How to live if you're going to die'. Then I mused, would people live differently if they thought they were going to die? Are there lessons from those of us who do, which would help those who don't? Hence, "How to live (as) if you know you're going to die".

My Story

I was finishing a boring meeting in September 2011 about disability equipment stores when my husband rang me. "Oh darling" he said "the hospital have rung and you have to go in to see the doctor in the morning on Ward 19". We both knew what that meant. The previous October I had moved my daughter into university and pulled my shoulder. A couple of weeks later I moved a filing cabinet at work, stupidly, and pulled it again, then I slipped on the ice in that awful snowy November, and developed pain under my ribs to add to my shoulder pain. Over the next couple of months, I went backwards and forwards to the doctor. I slowly developed other symptoms; I was losing weight and I felt full quickly and bloated. I was only eating child's portions of meals. Despite these warning signs, my GP was at a loss and decided I had chronic pain. I had previously had breast cancer in 1999 and had a mastectomy, but still no alarm bells rang. She eventually decided I had chronic pain and gave me painkillers. I was so frustrated because I knew I was ill, but I felt fobbed off, so I stopped going to see her. By August I had a large lump, probably the size of a rugby ball, in my lower stomach, I felt tired all the time, had lost more weight and felt really poorly. I finally stopped being stubborn, listened to my poor family and went to see another doctor. He referred me to a gastroenterologist, who eventually saw me and organised a CT scan. Then, a couple of days later, I got the call. Nobody wants the NHS to move quickly. But I was confused, Ward 19 wasn't a gastroenterology ward, it was a gynaecology ward.

We arrived on the ward the next day, suspecting what we were going to hear, but hoping to be proved wrong. A very nervous registrar read us the CT scan results. I had a large mass in my pelvis which was likely to be ovarian cancer. They don't tell you it's cancer until they know, but they said they would be surprised if it was anything else.

Then one of the most horrible periods of my life started. The doctor said there would be a multi disciplinary team meeting and someone would contact me, but she didn't say when. We had almost a week of this awful diagnosis with no contact and no one to ask. Someone finally told us that the multi disciplinary team met on Mondays. Why they couldn't have mentioned that at the beginning is a mystery. It's so awful waiting for the phone to ring and decide your fate, and someone could just have told us when to expect a call.

The Monday MDT meeting became the bain of our lives. If I had a test after Tuesday, or certainly Wednesday, it wouldn't be reported to the MDT in time and we would have to wait for the next one, and for some reason most of my scans have been on Fridays. go figure.

When they did get in touch with me, it was to arrange a biopsy, which they did the following day, Tuesday, so it was in time for the next Monday. The next Monday, they said it was definately ovarian cancer and I needed to see the surgeon and the oncologist to decide on the course of action. The surgeon's clinic was Monday, which meant waiting another week, but we begged and pleaded and someone took sympathy on us and allowed us to go that afternoon.

The surgeon was lovely. He said he couldn't operate then, but would assess me again after 3 sessions of chemotherapy to see whether it had shrunk enough for surgery. I asked him when I would get back to work and what a good outcome would be for me, at which point he said the average life expectancy was 2-3 years. He was a very compassionate man, and advised us to make the most of every day. ........

I was a child of the '60s, so remember Spangles, clackers and decimalisation. I was the eldest of three children, which set me up perfectly for my career choice of Occupational Therapy because it taught me to be bossy, nosy and interfering. I only have happy memories of my childhood, doing idylic things like playing in the woods by becks, building dens and playing in each others gardens. We lived in a road of semi detached houses with lots of children, and had a real community spirit, and a freedom children can only dream about these days. We had no mobile phones; we went home for tea and made sure we got home before dark.

We moved to our house outside Middlesbrough when I was 11, and I had an uneventful school career. I did okay, although I wasn't brilliant, and had a small group of good friends. When we were about 15, my best friend, Dawn, went out with a boy called Graham, and I went out briefly with one of his friends, Lee. When we left school, I went to Sixth Form to do 'A' levels and Graham went to college to do a media course. I decided to go to a typing evening class. In those days of typing pools, before they became typing puddles, if a girl could type she would always have a job if all else went wrong. I was very surprised at the class to see Graham and his friend.

They were much more far sighted than me, and had realised that computers were the future and being able to type would be a useful skill. Graham says, however, that it was just somewhere they thought they would meet girls! Graham and I started talking and I realised he was a lovely, gentle person, intelligent and funny. We started going out and went on to get married at 20. It wouldn't be right for everyone, but we found we grew together and now I feel very lucky that we have had for over 30 years what some people spend their lives searching for.

When I was about 14, I had decided I wanted to be an Occupational Therapist. I knew I wanted to work with people, and the idea of helping people to become independent after illnesses or life changes appealed to me, as did working holistically with physical health, mental health and social and environmental circumstances. Graham and I had got engaged at 17, so going away to Derby to train was difficult, as was returning for my third year after getting married in the summer holidays. We had taken a pragmatic decision that we just wanted to be married and to leave it until I had finished my course would mean studying for finals and planning a wedding at the same time. As it was, I think my wonderful Mum planned the wedding more than I did as college gave me a placement in Kettering, which could not have been more awkward to get to, directly before the wedding, although I had asked them to be closer to home. I had also had an excrutiating meeting with the vice principal in which she questioned the wisdom of getting married and told me that she would be annoyed if I wasted my training by getting pregnant. How times change.

I was lucky enough to have an interesting an varied career, working with people with learning disabilities, with people with various medical and surgical conditions and in Social Services, a job which made me realise what a sheltered upbringing I had had and showed me another side of life. But my absolute love was working with older people. I worked in both physical and mental health areas, but to be honest, most older people have a combination of problems anyway. I loved listening to the people and their stories, and learned so much about how people cope with their circumstances.

Decide what matters

When I found out I would be lucky to live for another 3 years from my diagnosis, it was in some ways a mundane time in my life, and in some ways the most profound time of my life. I was thrown into rounds of appointments, tests and treatment. In fact at times I thought, 'how can they be asking me to do all this when I'm ill?' Especially when one of the tests involved sitting around a waiting room for 6 hours being called periodically for more blood tests.

On the profound level, it immediately drove me to consider what was important at that moment, which was my health. Suddenly the job I had poured my heart and so much energy into was totally unimportant. I spent the afternoon after my diagnosis going through my pile of ongoing work and deciding what could be finished, and what would need to be handed over to someone else, and making lovely colour coded files to that end. I went in for a day to tie up loose ends and hand over my work. If you had asked me how long I would have needed had I been leaving my job, I would have said 2 or 3 months, but actually I could hand it over in a day. I imagined, maybe even hoped, that I was irreplaceable, but actually found out that no-one is. Life goes on, systems go on. People said, and still say, they miss me, and I'm sure they do, but it didn't all fall apart. I remember being told on a course that we all have massive files of cases, but when we leave, we maybe only hand over 4 or 5, which suggests we could all be more effective and close more if something focussed our minds; and a cancer diagnosis certainly focussed mine.

My health wasn't the only important thing. I realised that I wasn't the only one going through this. My husband, my children and my parents were also suffering, and I wanted to support them as well, so had to work out how best to do that. For some people it was by listening to the stories and trials of their days as I normally would have, or keeping the routines that we could, such as walking the dog, although shorter and slower walks; poor dog! Some people wanted to help practically, and we found ways jobs that needed doing, giving lifts, housework or shopping. One friend kept saying, as people do, 'if there's anything I can do, let me know'. I generally didn't take people up on these offers. I figured that if they really wanted to do something, they would just be there, but I felt this friend meant it, and one day after surgery I was really irritated that my eyebrows had regrown and I was starting to look like Dennis Healey, so I did ask her if she could take me to have my eyebrows waxed. I felt that it must seem so trivial, with everything going on, to want to have my eyebrows waxed, but she was delighted, and we had a lovely afternoon.

Later, when I was recovering from my treatment, I became frustrated by my fatigue and frailty. I needed more in my life than daytime telly. People used to constantly ask me what I was doing, having no conception of how tired I was and how just getting up and doing the normal things people do just to get by was exhausting. I began feeling better and wanted more from my life. I decided my priorities were; my children, my husband, my parents and my friends. These are the things that really matter to me.

I also spent some time in the early months ensuring my affairs were in order. I made sure my will was updated, and that I applied for the pensions I had earned.

Strangely, after having spent over 25 years building my career, work didn't matter. I did miss the people I used to work with, but a responsible 110% job in the Health Service wasn't for me anymore. I loved the work with the patients but I did little of that, and I loved working with individual members of staff, supervising them, helping them develop, listening to their problems, both personal and professional, and trying to help them see a way through. There was a lot of my job which had become ticking boxes; spending interminable hours establishing filing systems of all the leaflets we had ever given patients, systems for version control, and rubbish like that. I do appreciate this has a value, but to me, ensuring the face to face services were up to scratch were much more important. When the North Staffordshire scandal blew up I did think, 'I bet their filing cabinets were beautiful' although their care obviously wasn't.

Over time, of course, the phone rang less. Some good friends keep in touch regularly, but the casual contacts reduced. This was to be expected of course; but I wanted to do something to widen my shrinking world and get the phone ringing again. I also felt that I have skills from my 25 years plus as a qualified OT and latterly as a manager. I wanted to make good use of my time helping someone else, but I went completely the wrong way about it and instead of helping got caught up in a ridiculous round of bureaucrasy.

I went to an agency that works as a broker for other local charities.

Energy is finite- what do you want to spend yours on?

One of the problems I have never resolved is fatigue. Even during my well phase I had limited energy, so I had to think how I was going to use it. I had to let go of routines that sapped my energy, and luckily we were in a position to keep on the cleaner I had when I was working. It was important to me to have a clean and tidy home, but it wasn't important to do it myself.

Say the things you want to say

When I've mentioned this chapter to people, one said 'that's going to get me into trouble', but I hadn't thought of it as anything other than positive.

I was just reading at the weekend an article with a famous person who described that his father had never hugged him or said that he loved him, and people often say their parents never said they were proud of them. I find it hard to understand that parents wouldn't want to tell their children how much they love them and are proud. Surely we would all want our children to feel good about themselves, and I firmly believe that everyone has good in them that deserves praise.

When you haven't much time, it becomes even more important to say the things you want to say. For me this would be making sure my children, husband and parents know how much I love them and how proud I am, but also it is about taking time to think what advice I would like to give them. This may be related to their personality and life situations, or it may be thoughts for points in their lives, such as getting married or having children.

Saying you're proud though isn't enough. It needs to be specific- I'm proud of you because you did this, or because you have a certain characteristic, or behaved in a particular way. It means more if it's linked to something.

Let go of the things that make you sad, no space for bitterness

I often quote ..... “Bitterness is like drinking rat poison and waiting for the rat to die.” ― John Ortberg Jr., Everybody's Normal Till You Get to Know Them...... "Bitterness is like taking poison and expecting the other person to die" It's so true. Often if you are bitter, the only person who knows about it is you, and perhaps your good friends and family who are secretly, or perhaps not so secretly, sick of you going on about it and wish you would stop going on about it. The person you are bitter about probably doesn't even know. The only person who is being harmed by it is you, by the worry it causes you and the damage to your relationships.

I remember a relative I used to visit regularly. She used to tell me about some other relatives who annoyed, upset or wronged her. To start with it was interesting; who doesn't like a bit of gossip! But over time it became really boring, and I found I didn't want to hear her complaining constantly about the same old things and not moving on. I started going less. Then each time I did go, I was told off for leaving it so long, and eventually I stopped going at all, so I am probably on the bitter list now.

I'm sure we all know people like this, and we probably try to support them for a while, but eventually even the most angelic amongst us start to think, 'oh for goodness sake, get over it'.

I'm no angel. Things have happened in my life I could feel bitter about. In particular, I was going backwards and forwards to a GP who didn't think of ovarian cancer, although I was displaying some classic symptoms, until it was too late. I also saw a plastic surgeon who told me I had fibromyalgia, just two months before I was diagnosed. I should explain, I had a breast reconstruction using stomach tissue following my mastectomy in 1999, and in our desperate fumbling to figure out what was wrong with me, my husband and I thought it might be worth asking a plastic surgeon, who diagnosed, in his brilliance, fibromyalgia.

When I was diagnosed, I was extremely bitter about these two people, but over time I have decided that it isn't worth getting upset about, there are more important things in life. Which is not to say if I met either of them in the street I would embrace them, but now I just feel sad when I think about them, not bitter.

Some of this is the passage of time of course, but some of it is a choice. We can all choose how we react to a situation. If you think you have no choice how you react to something, think about this: Which brings me to the subject of complaining. Do I think I had reason to complain about the doctors who missed my diagnosis? Perhaps. Would it have done any good? Probably not. I would probably have got replies saying how sorry they are I had reason to complain but their actions were appropriate in the circumstances, and I would have got a lot of stress. I do believe in people's right to complain if services aren't right, and especially if they are dangerous, and I applaud people who have the tenacity to do it: services don't improve if they don't get feedback. Sometimes I think though that complaining can stop us moving on. I needed to put it all behind me and fight the disease. I didn't need to fight the system as well. Of course I hope the doctors who treated me have changed the way they practice as a result. In meaner moments, I hope they feel some regret, although I very much doubt the plastic surgeon in particular gives it any thought at all- but that's surgeons for you.

When I was practicing as an Occupational Therapist, I met a lot of angry people. They were angry about the system, and felt they had to fight for everything. I felt this was especially true of parents of children with disabilities. Sometimes I went in and felt that the solution they wanted for their problem was reasonable, sometimes I even suggested going beyond what they wanted because there was a better solution. Often they didn't know how to respond because they were so used to fighting. I firmly believe that people in stress points in their lives have enough to do fighting whatever has been thrown at them, without fighting systems as well, and should be able to get supportive, caring services.

So, no space for bitterness. We have a choice about how to respond to situations, even unpleasant situations, and we can decide to let bitterness go.

Fix the things you can, get the right help from the right people

There are moments, lots of them, when we need help from other people, and there are lots of people around who can help us.

One of the first steps in goal planning was always 'who can help me achieve this?'. Maybe this will be someone you already know, sometimes we have to think more broadly. It's also about choosing the right person for the right moment.

Help the people you want to help, do things that make you happy (pros and cons of bucket lists)

I used to say that I always wanted to see the Grand Canyon. I imagined how it must feel to stand there and have your breath taken away by the power and wonder of nature. I won't get there now. I would never get travel insurance and couldn't stand for 3 hours in the queue at immigration. But it isn't really important. I would have liked to, but I didn't. I would hate my family to feel sad at some point and say 'but she never got to see the Grand Canyon', and that is more important to me than bankrupting them trying to achieve an unrealistic goal.

It always seems to me that bucket lists, lists of things someone wants to do before they die, have potential to be a huge source of regret, if they aren't able to achieve them.

Having said that, I would also say, if you really want to do something and you have, or can get, the resources to do something you really want to do, do it! Don't delay. How many times have we heard of people who save for their retirement, plan to travel the world, then something happens and they are not able to? None of us know what the future holds, so grasp opportunities and enjoy them. Your aim is not to build memories, but you are, and it will be so important to you and your family and friends should something happen. Hopefully nothing will.

I did see the Grand Canyon, from a plane flying from LA, and it was amazing, and that holiday gave me so many memories that I treasure. It also gave me one of my regrets- we bought our girls tickets to see The Killers at the Staples Stadium, their home stadium. I didn't know who they were then, but I do now and I'm so jealous. That would have been so cool! (Only joking guys!)

Forgive yourself

I have flashbacks to things that have happened in my life that are embarrassing, or I'm not proud of. I can be heard to mutter 'oh dear' or 'you idiot' on occasion. I'm really hoping that's not just me and other people feel that way too sometimes.

The thing is, doing that, sometimes about things that really don't matter or happened a long time ago, isn't helpful. It's that voice in my head telling me that I'm stupid, or tactless, or whatever. Of course, I have done mildly bad things, and I have been rude, or tactless, or stupid, but going back over it just makes me feel bad about myself. Some things I might have done because I was young, or tired, or got carried away with a situation. I can have a tendancy to be bitchy, and have a big mouth sometimes. I never mean to hurt anyone, and I always feel awful when I realise I have, or could, hurt someone's feelings.

So, given that it would be out of character for me to be malicious, and I would consider myself basically a good person, I need to be able to forgive myself and let these things go. I'm beating myself up about things that are often long forgotten. We are all only human, and we all get it wrong sometimes, but we need to be able to let it go. We are often our own worst enemies; we need to stop beating ourselves up, realise that we are basically good and ok, and change the voice in our heads we listen to and forgive ourselves for our past failings. We can't change the past, we can only change the way we react to it and what we do from now on.

Be the best person you can be, dignity in adversity

I have never been a hysterical person, so it would never have been in my nature to be anything other than dignified through some of the things life has thrown at me. Keep calm and carry on could have been written for me. Of course, I'm not perfect and I have my moments when I rail at the world, but on the whole the face the world sees has a dignity. It's not just altruistic though, there have been times in my life where dignity was a choice partly because the moral high ground is a very nice place to be- the view is good, and it really annoys the people who don't have it!

I have been influenced by role models, particularly friends and colleagues. Being lucky enough to have a strong role model, or even better, mentor, is a powerful thing. When I have been stuck about a course of action, I could think, 'what would that person do in this situation?'. Sometimes it's Audrey Hepburn, sometimes a previous manager and friend, but it is someone whose actions or values I respect.

You can't expect to go straight to dignity. You need time to digest whatever has happened, make sense of it, then decide what course of action to take, then take it.

Other people don't mean to get it wrong, don't judge yourself by other people's standards

To quote the words of that great modern philosopher, Baz Lurhman, in his record, Sunscreen, 'the race is long and in the end it is only with yourself'.

People tend to judge themselves against other people, in my experience, especially family members, but in the end it doesn't matter. Success can only be judged by what we hope for our own lives and the way we live them.

I have known millionaires and highly successful people, some of whom are very happy and some for whom the money hasn't given them the happy life they might have hoped for. Equally when I first qualified, I worked with adults with learning disabilities, for whom success used a different scale. I worked with one young man who wanted to learn to cook a meal for himself. Over a long time, we laid the groundwork; asking him what he wanted to eat, shopping with him. We made the meal alongside him, and he gradually helped more, until he was able to do it with supervision and guidance, then eventually on his own. What was this gourmet delight, I hear you ask. Well, it was beans on toast, but this was a man who had lived in an institution, never even made decisions about what he wanted to eat or thought to prepare it. He was now on the way to having some independence, and I was as proud of him as I would have been if he had made his first million.

Most people are somewhere between those two examples on the scale, but might think; my sister has a bigger house than me, or manages to hold down an important job around her family, or whatever. In the end it matters not a jot. None of us knows what goes on in someone else's life, behind their doors: all that matters is that we each live the best lives we can live with what is thrown at us. For some of us that might be taking steps to get out of debt. Some days for me it has been an achievement to get out of bed and dressed, but if I can look back on my life and say that I did my best and achieved the things that are important to me, such as giving my kids the best start I can and maintaining my dignity and integrity in difficult circumstances then I will be very proud.

Enjoy the small things

My youngest daughter has always wanted a dog. Whenever she used to ask for one, I used to say 'yes, as soon as you get your own house, you can have a dog'. However some years later, Graham joined in saying he would like a dog, and it was harder to use my witty line with him. They dragged me to the Dogs Trust, and I should have known better because, sure enough, we came out of there having signed up for a dog. He was called Oliver, a 12 year old cocker spaniel, and was gorgeous. He came up to Graham and rolled over to have his tummy tickled. Graham looked like a little boy and said 'Can we have him?'. Of course my heart melted too.

That was the beginning of a new era for us. We used to walk him every night and talk about our days. It was really calming and a lovely new routine. We took him out for walks at weekends, looking for new country places he could run around.

At about the same time, our daughter was doing her Duke of Edinburgh Award in Swaledale and Wensleydale. One day we went to pick her up, but went early and had a drive around, stopping to walk the dog. It was Spring, and the sat nav took us up a tiny unfamiliar road between the two dales. There were lambs, and we had to stop to let some chicks cross the road. The sun was shining. We had been discussing buying a holiday home, or a property in London, but at that moment decided to buy a house there.

We spent the next weekend househunting and by my birthday at the beginning of July, were in our new property, a 200 year old farmworkers cottage. It is tiny, with an open fire, a little garden and lovely walks on the doorstep. We had gone from being real townies to appreciating the countryside.

I have enjoyed having that property so much. It has given me a feeling of the beauty and wonder of nature, and the passing of the seasons. I love seeing the old farmers, in their collars and ties, worn underneath an overall and wellies. I love seeing the lambs, which start to arrive in mid-February. It may still be thick snow for some time to come, but for me that is Spring. The ultimate optimism, that Winter is going to end and it is all going to be alright.

When I was in the middle of chemotherapy, and recovering from my operation, even if I couldn't walk far, and even if I had to spend Saturday nights in watching talent shows, it was still worth going to see the seasons. I bought Graham a walking sat nav for his birthday, but it wasn't the best gift at that time- we could usually still see the car when I had to turn around!

I recently attended a brief workshop about mindfullness, and one of the aspects of that is enjoying the moment, taking time to sense what is around us, and I realised that that is what I have been doing: taking time to smell the roses.

Graham has just bought me some chickens, and I am loving seeing them scratch around, and bask in the sun. There is such joy in these small things.

Graham Robb picks up the story here

As she had finished this part of her essay, in spring 2013, Sue’s cancer returned. Thankfully her doctor was able to access the Cancer Drugs Fund, established by David Cameron’s first Government. The fund allowed her to have a course of Avastin. The Christmas of that year was very good and Sue and I followed it with two holidays in 2014. The first to Rome, where she was fit enough to walk from the Spanish steps to the Roman Forum and take in the Pantheon and other sights - she was a little tired but fundamentally well. In May - June we had our last holiday together, staying in a fabulous five-star hotel in Ravello. These few months following the Avastin were truly happy; I turned 50 and we were in the thirtieth year of our marriage. During the final holiday I can now see that Sue was weaker than before, she appeared to know remission had come to an end. A few weeks after arriving home she started to get sharp tummy aches, they were so bad we went to A&E. The experience in hospital was not good - long waits, junior doctors asking irrelevant questions, and tests delayed due to poor organisation (I subsequently complained and received an apology). The final diagnosis was that the cancer had spread quickly and aggressively to cover her entire bowel, which had burst and was inoperable. We were told that there were, at most, two weeks left.

Once the news was confirmed Sue wanted to spend her last days at home. It was explained that this would involve a regular visit up to three times a day from the district nurse, support from the local hospice and Marie Curie and a syringe driver of morphine to kill the pain. No fluids could be administered at home and therefore Sue would pass away within a week to ten days of being discharged from hospital. We had a special bed delivered to the home, cleared the sofas from the living room and let her look upon our garden during her waking hours in the summer sunshine. Wimbledon was on the TV and my two daughters tenderly cared for their Mum, taking turns to aspirate her after being shown how by the nurses. The visits were restricted to close family and, after planning her funeral with our vicar, recording iPhone videos and writing final messages to me and the girls, Sue said her goodbyes. She went into a coma on Thursday lunchtime and quietly passed away on Monday evening with the three of us saying a prayer and holding her hands. I’m convinced she could hear the prayer. She passed her last breath on the word Amen.

Life without Sue has been very hard but she did her best to help me. I subsequently discovered all sorts of things that she had planned, from an index box of my favourite recipes to her finding somebody to clean who would become a housekeeper and help me adjust to my new life. Every night I thank God that she was such a towering figure in my life and for the beautiful daughters we both raised. I will love her forever.