‘Sell by’ Dates

You know what I’m talking about. There are major events in our lives – getting married, taking ‘A’ levels, giving birth – that are so momentous it feels they will never actually arrive. After all, they are just normal, run-of-the-mill days for everyone else. Then, when you’re doing your grocery shopping, you realise that the ‘best before’ dates are beyond the major event. By the time you’ve eaten your Waitrose chicken and leek pie you’ll have a new baby in the house or you will have decided your destiny in some important way.

It’s hard for me to talk about but it I feel I have significant ‘sell by’ dates all over the place at the moment. I’ve just booked my Ocado Christmas food delivery (note to you all to check you have not missed out!). I have social events in my calendar through to late December. But will I still be around? I was surprised to hear Linda Bellingham talking about making it through one last Christmas. She seems quite certain she will have just a couple of months to live after finishing chemotherapy. None of us really knows though, do we?

At some point over the last few weeks I seem to have begun a new journey, one that has death as its destination. Well, this blog has been all about having terminal cancer, but till now it was more about living well. Sorry to be morbid but I admit that sometimes now I do feel like the end is imminent. Now I sense a fading. Physically I am struggling. And I can’t help feeling people are beginning to queue up to see me one last time. Organising my social calendar is becoming an issue. I find it difficult to socialise for too long but that’s tricky when people have travelled a long way. It is also hard to turn people down. I’m just muddling my way through, with depleted resources and my own demons. I’m not sure what is expected of me but I’m sorry if I have let you down. What do you do with your time when it is so limited and you don’t know how much of it you have?

Rather than focusing on death, I was thinking about what I have learned over the years about living well. Do the principles of living well apply equally to dying well? I admire Martin Seligman and he says there are five elements to wellbeing, summarised in the acronym PERMA: positive emotion, engagement, relationships, meaning and accomplishment. He means we should try to be optimistic and see the positive in the world around us; we should participate in activities we love that take all our attention and make us lose track of time; we should cultivate good relationships; we should look for meaning in what we do; and, finally, we should improve our skills and competence. I know I have been lacking in the positive emotion department. Life in a wheelchair can partly be blamed for that. I’ve just suffered the humiliation of getting stuck in a decorative basket in the Cook Frozen Meals shop in town (half in, half out, I think you had to be there!). Poor Bart did his best but I had to fight back the tears. It is only now that I can laugh. Which has reminded me of the importance of humour. I should definitely laugh more. We should all laugh more.

I’m on a new journey – a strange and sometimes frightening one. But I realise we are all, to some extent or other, on that journey. It’s not that I’m particularly special or significant but when someone is dying it is bound to raise issues for those around. I hope that you can find what you need – peace, hope, answers, meaning. And as for those pesky ‘sell by’ dates, let’s just ignore them, shall we?

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Dropped Kerbs and Other Obstacles

I fear my brain may have gone the same way as my legs – i.e. stopped working. I hope I can still express myself to you loyal readers. For those of you who don’t know, a pain relief procedure (saddle block) went wrong and has left me with numb legs. I can walk with a frame but I struggle to make it up the stairs. I have to use a commode. SO much of my independence has gone and oh how I prized it. I have always lived life MY WAY!

I am home now though. There was so much I missed about home while I was in the hospice: being able to sit next to my oldest daughter and rub her back, running my fingers through my youngest daughter’s long hair and stroking her soft skin, the brightness of the daylight through the elegant sash windows, the white décor, the perfume of my scented candles, the endless chatter (or ‘banter’!) of my three teens/pre-teens, the sound of laughter, even of bickering, Movies 24, food I want and have chosen to eat, a cold glass of white wine, my own timetable . . . What do you love about being at home? Make the most of it, humble though the pleasures may be.

I am daring to brave the world outside nowadays. I’m checking out wheelchair accessibility at all the local bars, pubs and eateries. Never has a dropped kerb held so much interest! Thank you to all my friends who didn’t realise how much hard work it was to push me round the block or into town. I don’t think they were expecting a workout! I may have pretty useless legs but at least I can still engage in my favourite activity – listening and talking to people. I’m a captive audience now – no choice but to pay you attention.

I’ve been facing my greatest challenges yet but I’m glad to say there is still a little joy to be found in life. I couldn’t see it for a while but the light still shines. Long may that continue.

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Peeling

The kids are peeling. Yes, peeling. Do you remember that feeling and look, from our pre-skin cancer awareness days? All that effort, putting up with the discomfort of overheating and sunburn, in order to obtain a glorious copper tan, and then, suddenly, it all starts to peel away, leaving unattractive white flakes and shiny pink skin. I remember continually plastering myself with moisturisers of every type in an attempt to prevent the demise of my tan.

The kids are asking me what they can do. I hate to tell them but I think the peeling process is now inevitable. They just tanned/burned too quickly on our four-day trip to the French seaside. They will simply have to surrender to the process.

This has made me think about my attitude to life at the moment. I am rather alarmed to realise that, for the last two weeks, while I have been away on holiday, I have abandoned all my usual strategies and methods aimed at prolonging my life. Normally, I repeat positive healing affirmations, I practice deep breathing, I meditate, I listen to hypnosis CDs, I see a healer, I talk to my psychologist, I read self-help books, I try to be mindful, I think positively, I pray, I socialise . . . the list goes on. I have plans for new strategies. I am always seeking new ideas. I will do everything and anything I can to heal myself. That is my mission.

I thought I had stopped myself from endless striving but it seems I have just redirected my energy. What did I expect? It’s who I am. I have goals. I pull out all the stops. I give life my all. And there’s nothing wrong with that. But it was a relief to me to realise that I could actually stop trying – like the peeling process, I could just let it happen and hope for the best.

I can become very confused working out what I should do and what I should try next. It’s a lot of pressure to try to heal oneself. I’ve realised that if, as I have done for the last two weeks, I abandon all my striving, I am okay. For now, I’m too tired to strive. Sometimes it is fine to let life take its course. I can sit back and watch the world go by. I think perhaps it is only then that I listen to my inner wisdom, to hear that quiet voice at the centre of everything. We all have intuition and we should trust it from time to time. Let’s see what emerges once the peeling process is over. You never know, I might have a beautiful glowing colour underneath.

Posted in Cancer, Terminal illness | 4 Comments

About Time

I don’t know what’s wrong with me. I’m usually a fairly patient person, but I’m becoming irrationally angry when I’m stuck behind a slow driver. Slow drivers beware – there will be a road rage incident soon! You may have time to waste but I don’t! I want to move as fast as possible to my destination. I don’t want to wait for you. I want to accelerate quickly away from the junction. I find my blood pressure rising and my muscles tightening. I have even been known to curse! Why, oh why are there so many slow drivers on the road?

Time takes on a strange quality when you have incurable cancer. First and foremost, it is very precious. Time is all I have and everything I’ve lost all at the same time. I’ve turned to mindfulness because the present is suddenly so important. The past could be important if there are things that need to be put right. But the future is out, for sure. I don’t like to think too far ahead – I live my life in three month blocks.

July is a pressured month for me. There are three family birthdays – Bart’s and the two girls’ – and, of course, I have to make them as perfect as can be! It’s always a bonus when the birthday coincides with the party (or other celebration) otherwise you have two days of perfection to achieve for each birthday! This year, I’ve tried very hard to enjoy the days and relax, but, deep down, I’m still wishing the time away. Isn’t it a shame?

What is your relationship with time? Do you find yourself running after time, with never enough time, killing time until the next big thing, ruminating over time past? I used to live mostly in the future. I would plan, plan, plan. Live for the next treat, the next holiday, the next event, and I would have a steady stream of goals to achieve on the way. Now was never enough. I have been forced to live in the present. Thankfully I don’t feel the need to live in the past. I have some regrets but there are no relationships to put right, as far as I know??! But what about present time? How do I treat it? Life is precious but, as you know from previous posts, there are lots of very ordinary moments. I am trying to squeeze the joy out of the present. But I also have to make choices about how to spend my time, especially as I have less energy now. This is where values come in. My psychiatrist has introduced me to ACT – Acceptance, Commitment Therapy – and an important aspect of this is to identify and commit to following your values. We very rarely stop and think about what they are and I have found it quite helpful to do so.

When people ask you to work out your values in life they often do say by getting you to answer the question ‘What would you do if you had a year to live?’. Well, here I am, living out the question. I do worry sometimes because I don’t have an amazing, inspirational and original bucket list. I don’t have a bucket list at all. I guess I’m just trying to make the most of ordinary, everyday life, with a few holidays and mini-breaks thrown in. What would you do if you were me? You’ve probably thought about it. Values are not the same as goals. Values are directions for our lives that we can hold on to forever. What do we want to bring to life, to relationships, to work, to society? What ongoing activities do we want to dedicate our time to doing? How do we want to be? One value that is central for me is spending time with people I know and love, listening and paying attention to them. I have always been genuinely interested in people. Everyone is unique and intriguing. I find it fascinating to hear people’s stories, to understand the essence of who they are and what makes them tick. I find it a privilege to listen to my friends and family, even if it tires me.

I need to think some more about my values. At work, I tended to have goals rather than values and that needs to change. There’s a lot more to discuss when it comes to values. Where does my love of chick-lit and true movies fit in, for example? But more of that next time . . . In the meantime, just make sure you stay out of my way on the road. Time is too precious for hanging around!

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How to Holiday

I have just returned from a short break with Bart in a beautiful part of Mallorca. It made me wonder about how we holiday – what sort of attitude we have. Are you happier than normal or does everything fall short because your expectations are so high?

I spent much time people watching – well there was a promenade. The very stylish hotel was full of very stylish people. I noticed in particular the glamorous, linen-clad couples with stripy-topped babies (the mothers were invariably blonde, petite and THIN!). It was obvious they were trying to have a great time and make the best of their situation – bringing baby down to dinner on the terrace in designer buggy, which they took in turns to push along the promenade. While I was feeling jealous of everyone because they were not terminally ill, other people were probably also in that twilight zone of dissatisfaction – waiting for the perfect time to come or wishing for the perfect time gone by. The couples with babies were probably thinking life will be better in a few years’ time when the infant requires less attention. Wishing for the time when they will be able to read a novel on holiday again. But the older couples were probably feeling nostalgic for an earlier period when they had more energy and were more in love with their partner. The single people (on a cycling trek) were probably looking forward to the time they could return to the hotel for a romantic weekend with a new partner. The couples with teenagers were probably thinking how simple life was when all that mattered was getting a good night’s sleep.

Is the grass always greener? Do we spend our time on ‘hold’ waiting for the perfect circumstances to align in our lives? Holidays are, in a way, a sanitised, perfected version of our lives – why would we bother going away if those few days were not going to be better than our ordinary lives?

Bart and I are terrible for ‘hotel hopping’ – snooping at the very best hotels in the area. In Mallorca, we even went to look at the hotel we nearly booked! We just go for lunch or for a cocktail. I always check out the toilets because they tell you a lot. We gasp at the prices of a bottle of water (12 euros)! But it’s fun. Does it make me dissatisfied with where I am staying? Well, that depends, but it’s a price worth paying!

You don’t realise, until you lose your appetite, how large a part food and drink plays in your holidays. Unfortunately, my appetite was not good in Mallorca. I kept ordering what I knew I loved but would almost cry with sadness when it arrived because I could only manage a couple of mouthfuls. Really, I should have made do with the gazpacho soup. I seem to be better with desserts, I don’t know why. I must have really confused the waiters. They might have thought I was a little anorexic as I played around with my salad, but then I gobbled macaroons and scraped the plate clean of pistachio ice-cream! It made me appreciate my other senses more, I suppose. For once I was glad to be an aesthetic person. I drank in every beautiful view and tastefully designed terrace. And there is nothing more soothing than listening to the waves lap on the shore every night. One night was festival night and I loved the buzz and laughter from families picnicking on the beach with their candles and fires.

It’s a shame, but I guess we take all your insecurities and anxieties with us when we go on holiday. If only we could throw them away with the leftovers of our bottled water at the airport security check. I felt I didn’t do too badly on the Eve Envy front though this time. I know the grass is literally greener in England but for now I’m going to look through my photos and cherish the memories of a wonderful holiday.

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The Importance of Being Beautiful

I never, ever, ever, leave the house without makeup. I never walk around the house without makeup. Throughout my gruelling rounds of chemotherapy there was not a day when I did not get up and dressed and put on my makeup. When I was in intensive care after major surgery, I put on my makeup – apparently I was the first patient in the Warwick ICU to do that! You get the message. I care about what I look like. I try to be as beautiful as I can be. I spend a lot of time on my wardrobe, choosing the right combination of items to accentuate my best features and hide my worst. A junior doctor recently told me I looked like I’d put on weight. He seemed pretty confident I would take this well, as a sign I was healthy. In reality, I was a little put out. I have to admit I rather liked being thin.

I’m not sure it’s a good idea to care so much about what you look like:

  1. People think you’re healthier than you are. In fact, the effort I make may have been a factor in the late diagnosis of my Stage 4 cancer. Early on the day I found out, a consultant, who arrived as I was blow-drying my hair, said ‘In my experience any woman who takes that much care of their appearance is not ill at all’. Ha ha ha! I love it when people say I look well, but I also find they expect a lot of me – they don’t make any allowances. I struggle now to stay up late or to travel any distance. My healthy ‘glow’ (from a tube) may belie the fact that a few hours socialising really takes it out of me.
  2. Isn’t it morally wrong to invest vast amounts of time and energy on something as superficial as my outward appearance? Surely it’s what’s inside that counts. I have always felt guilty about my preoccupation with beauty: it is nothing more than vanity.
  3. There’s a danger you never meet your standards and feel beautiful enough. I often have ‘ugly’ days. Do you find they coincide with how you’re feeling about life in general? When things start to go wrong you feel more unattractive. Bart always tells me it’s my mood not my actual appearance that changes.

I have accepted that, whether right or wrong, it is who I am to care about what I look like. It’s a matter of personality and values. I’m an aesthetic person. The appearance of the places I inhabit and visit matter to me. I see much beauty as well as ugliness. Ugly environments make me feel depressed. I believe in creating beautiful environments and trying to generate as much beauty as possible in the world around me.

What has bothered me recently is that I have been slightly less bothered about what I look like. There could be two reasons for this: a) I’m giving up because the task of looking beautiful is too difficult, what with my bags and my scars; and b) maybe the bigger battle to stay alive is dominating. It’s a bad sign, I think. While ever I have the energy and motivation to put on my makeup and style my hair, life is under control. Don’t worry, I’ll be holding on to my ProCurler for a good bit longer . . .

As Bart keeps reminding me, the upside to incurable cancer is that I’ll never have to deal with the loss of beauty that most people associate with growing old – ‘die young, stay pretty’ he says! It’s a little extreme though. I would have settled for botox.

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Money: the Route of all Evil?

I’d like to think I’ve brought my kids up to know the important values in life – caring about those less fortunate than themselves, developing good relationships with friends and family, understanding their own emotions, making the most of their talents, working hard . . . Bart and I have never been particularly ‘pushy’ parents. As we both love our jobs (most of the time), we just want our children to find careers that use their strengths and bring them joy or meaning. If I’m honest, I might have developed this philosophy at a time when I feared my firstborn might not have the academic aptitude that his parents once boasted. He probably could not be a doctor or a lawyer even if he wanted to be! But still, I felt quite proud that I could be laid back and relaxed about their futures.

I often hear friends saying, while frantically tutoring them to pass exams, that they just want their kids to be happy and have choices in life. I think we should be a bit more truthful with ourselves. We all have an agenda for our children. I wanted mine to be popular – probably because I achieved everything I possibly could academically (straight ‘A’s, Oxbridge education etc.) but was still unhappy. We often want our children to have what we lacked. When people say they want their kids to have choices they really mean they want them be able to choose to be a doctor, lawyer, accountant, management consultant, work in the city, or generally pursue a high-achieving, well-paid career. Would it be okay to choose to be a nurse, teacher, personal trainer or artist?

But imagine my recent alarm when my 15 year old expressed his main desire in life as wanting to make lots of money! Not just a good professional salary but mega-bucks. He wants his first car to be a Jaguar. I feel I have gone wrong somewhere. I have told him many times that, above a certain minimum, money doesn’t make you happy. I have told him that, after about a year, lottery winners are no happier than they were before. I have told him that good relationships bring us more happiness. I have told him it is important to enjoy the job you spend so many years of your life doing. So where have I failed?

Have I failed? It’s got me thinking about whether or not it is wrong to want to be rich. Maybe it’s a natural instinct. A biological compulsion to compete and succeed and dominate. Perhaps it’s a hangover from my religious upbringing to believe money is the route of all evil. Money can be used for good, after all. We need rich philanthropists to support our charities. Those of you who know me well, know that I have expensive tastes. I have always wanted more money. If I laid my soul bare you would find passions not dissimilar to my son’s. I’d love a Jaguar, too. I’ve tried to repress my love of money, but it’s there. And do I have a different perspective now I have incurable cancer? Obviously I would trade money for life, but I still have expensive tastes. I can now justify my desire to stay in luxury hotels. For once in my life, I feel I’m worth it. As for my son, let’s see. He’s just spent some of his birthday money – he lent his sister money to buy some shoes she wanted and he bought his dad a vinyl record he thought he’d like. Perhaps he’ll be okay then?

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