Friday 17th June is “wear something yellow day” to raise awareness of the great work hospices do in looking after patients with life limiting and terminal illnesses as well as their families.
I will be doing my bit by wearing something yellow; watch this space!
So on Friday 17th:
I dream about my husband every night. In my dreams he often refers to me as “my darling” and I feel his presence as if he is physically in the same space I occupy.
Except he is no longer here.
I don’t know what it takes for our brains to process the permanent absence of a loved one, but I do know it doesn’t happen overnight. For me, it is as if his being or the essence of who he was has been permanently etched onto an area of my mind which constantly tries to recall him reproducing a hologram for me to hold on to. That’s how he appears in my dreams.
I shared nearly 18 years of my life with Michael, a long time, some might say, and yet not enough.
In that short time together we lived through a few upheavals, moving home, raising children, juggling work and family life; like all relationships do, and yet there was never a moment when I wished to be parted from him.
Ok, that’s not strictly true, there were times when he drove me up the walls and on occasions a heated argument would have me walking out of the house in a huff and a puff, driving away somewhere by the sea (always the sea) until I felt I’d regained some perspective and drove back home, where upon my arrival he’d insist on kissing me, making up and forgetting about the argument because as he said “it wasn’t worth it”.
And he was right, no subject was worth the aggravation or the break up of our relationship. There was a bit of pride to swallow, a bit of negotiating, some compromising from both sides and finally an admission that one of us had got things wrong. But I never wanted to be permanently parted from him.
So to find myself parted from him, without choice, has put me in a position I never wanted to be in or even imagined would be possible.
I don’t have bitter feelings about our life together, because, on balance ours was a good relationship, one based on mutual respect, love and admiration. However I do find myself wondering why life has turned out to be so unfair. There seems to be no logic to it.
Michael was so full of life, he loved life, he was annoyingly bright in the morning so happy to be alive and to be able to see another day. He would insist on recounting three good things that had happened at the end of each day, a habit he tried instilling in me; alas I was never enamoured with the idea, that was his thing. I’m glad to report, however, that our children seem to have inherited his chirpy, cheerful morning disposition; I’m working on the “three good things about today” bit.
I know Michael was preoccupied with what was his mission in life and often wondered whether his reason for coming into this world had come to pass but he had yet to realise what it was. When he was told treatment was no longer having the desired effect on the cancer, he mourned the fact that he wouldn’t have enough time to know whether he had completed his mission in life.
And I guess we mostly go through life without giving a second thought as to what legacy we will leave behind. It’s often the case that we don’t take stock of what we have done and how many lives we have touched or we don’t realise the ripple effect that our actions have on other people’s lives, until it’s too late.
So I’m a runner; nothing remarkable in that, you’d say. But, you see dear reader, just five years ago I could not describe myself as a runner.
Five years ago I was someone who did a bit of exercise, you know, going to a couple of Zumba classes every now and then, entering charity runs, cycling a bit, walking and, in between, weight yo-yoing (not a sport I’d encourage anyone to partake). I was not unfit but was definitely not fit.
Out of nowhere, I was hit by depression. The worst kind you can imagine. The one where despite all the good things in my life I could only see the negative. The “I do not want to get out of bed” kind. The “it’s a beautiful sunny summer’s day, kids are playing in the garden and laughing, but I cannot be bothered to join them” kind. And worse, but I will spare you the details.
In retrospect I can now see what triggered my depression. I was nearing the big 40. I started to look back at my life and evaluate it. It did not come up to my exprectations.
My life was good at that point, I was married to someone I loved and who loved me, I had a job with good career prospects, I had my three, beautiful, healthy, funny children, I had a roof over my head, I had good friends and no debts. What more could a woman want?
As a child of the 70s and a teenager in the 80s, I had mapped out my life, following lofty ideals of success and achievement. I had set some expectations for myself and had been encouraged to do so by the influential adults in my life. It wasn’t just the “what do you want to be when you grow up?” type of exprectations, it was more detailed, down to the colour of my car, the way my house would look, what type of house I’d have, where I’d be going on holidays, etc.. I’m sure you get the picture. “Mapping” my life was supposed to give me focus, drive me to achieve and ultimately make me happy, or so was the theory.
So when I stopped and evaluated my life as such a big birthday got nearer, the reality did no match my mapped expectations. I now realise that it was the chasm between the fantasy of what I had expected and the reality of what I had achieved that triggered my depression.
After a lot of counselling, medication, and support from my husband and my dearest friends, I recovered. This was the year of 2013, the big 40 had been and gone and I had survived, but with a re-assessment of my life I realised I had got my priorities wrong, because of what I had expected rather than what I had hoped for my life.
Then, cancer came knocking at my husband’s door. I can safely say that this was a whole new ball game, one where the rules were only known to one side, the alien invader, whilst the other side, our family, were trying desperately to work out those rules. Not a fair game by any stretch of the imagination; despite, at my husband’s behest, putting on our brave faces and trying out our best moves, we clearly were the underdogs. Just when we thought we were getting on top of the opposition’s tactics, cancer decided to change the rules several times in succession so that it felt as if we were attempting to play the game blindfolded.
Realising that cancer has no qualms in attacking the body, destroying the soul, testing relationships and distorting all that resembles normality, I decided to run for survival. I started running as far and as often as I could, this time with no expectations, just hope. Hoping that the runs would help me sleep better, improve my mood and work out stuff in my head. Not always succeeding but never giving up the hope.
And eventually running did help; it made me fitter so that I could take on the extra responsibilities that came with caring for my husband, as well as still going to work and being there for my children. It made me calmer so that I could think clearly in stressful situations, and it gave me some space and “me” time to be alone with my thoughts and emotions.
Since deciding to run for survival, I have also dealt with my own cancer diagnosis and the death of my beloved Michael. Widowhood and cancer together is not a combination I would wish fall upon anyone, not even my worst enemies.
Today marks 4 months (121 days exactly) of the death of my Michael, I haven’t stopped running even through the darkest days; I believe he would have been proud. Nowadays I can’t run fast (I was never “Speedy Gonzalez”) but I can still run far and this knowledge brings me satisfaction, because despite the alien invader’s best attempts and the pain of losing my love, I’m still running, I’m still surviving, never expecting, always hoping.
Monday 9 May marked the start of Dying Matters Awareness Week during which time we are encouraged to talk about death and dying, not in a morbid but in a constructive way.
The hashtag #BigConversation has been used to instigate discussions around our last wishes as we face death, specially about how we want to die and what we want to happen when we are dying. This includes, amongst other things, whether we want to die at home, in hospital or in a hospice, what kind of treatment we would allow or refuse as we approach death, and how we want to be remembered.
Whilst all of these issues might sound scary, morbid and downright sordid to some, my experience of seeing my beloved husband dying has taught me that these conversations are better had when we are not in pain or suffering, when we are able to clearly express our preferences and when we are not vulnerable. It also allows time for reasoning, explanations and acceptance, all of which are difficult to attain when we’re reaching our last days and hours of life.
After my husband died I found a folder with neat writing on it which read “FUNERAL” and I thought “great, he has left it all organised, nothing to worry about!” Little did I know it was just a smoke screen; on opening the said folder I found:
And that was it!
I knew, from his will, he wished his body to be cremated. Other than that nothing, zilch, niente, nada.
You see, my husband did not speak of his imminent death, even though we had known for more than a year that the cancer no longer responded to treatment. He he did not allow the conversation to take place. It was too much for him. I can only speculate his reasons, he never said why.
This silence meant for us a prolonged suffering, a wanting to speak up but never feeling that we were allowed to. Not having those conversations means that at times I feel rudderless specially when trying to guide our children through life. I often attempted to ask him how he would have wanted me to, for example, advise our children on relationships, money, buying their first car, etc. only for the subject to swiftly switch to football or rugby or whatever other sporting event was his latest preoccupation.
For our children the silence now means a lot of questions which will remain unanswered, this makes their and my grieving so much more difficult. I am always mindful of honouring his memory and constantly looking for opportunities to put together a legacy to give to our children to hold on to. I am only hoping that it is just what he would have wanted.
So if there’s one thing I wish for you readers, is that you make time to talk with your nearest and dearest about dying matters, if not to ensure that your wishes are carried out and respected, then to save your loved ones the anguish of second-guessing what your wishes are.
I recently had to explain to a family member how this grief thing feels.
I’m a visual person, I tend to explain myself with images. So I said, this grief thing feels as if someone has found a giant melon baller in the back of the kitchen drawer and have set about making balls out my abdomen and, once they were satisfied they had taken enough flesh, I was left with a gaping hole where once there was a belly.
So now I walk around with my abdominal muscles permanently clenched hoping the gaping hole begins to heal. But some days if one looks carefully the hole is still there, containing a vortex within a black hole which sucks away all the light and energy from my being, leaving me breathless.
When these days come, which right now are nearly a daily occurrence, I pull up the draw bridge and retreat to the safety of my bedroom; messages are not replied to, telephone calls are rejected, no matter how good a friend or close family member they happen to come from. These are dark days.
Other days if I’m brave enough to peer through the hole I can see all my vulnerabilities exposed for the world to see, which makes me feel as if I’m walking around stark naked. A very uncomfortable feeling I hope you’ll agree unless of course you’re a naturist in which case I take my hat off to you for being confident and comfortable in your own skin.
However that’s not the worst part of grieving. No, no, no; the worst part is when, as I begin to get used to the hole, some insensitive person tells me how their wife’s second cousin’s neighbour’s uncle had cancer but luckily recovered and is leading a normal life. Whilst it is a positive thing to hear that for some people cancer hasn’t been a death sentence, I fail to see how that’s meant to comfort me. So I will describe how this feels, it is as if having noticed my gaping hole they decide to take the ice pick in the photograph and use it to dig a little deeper because the hole wasn’t big enough.
So the moral of the story is: next time someone you know or happen to meet tells you how they’ve lost a loved one to cancer don’t tell them my story, just listen to theirs, that’s it just listen.
Originally posted on Facebook on 16 January 2016
On 15 January at 22:55 (GMT) my amazing and courageous husband died.I have lost my soulmate, my best companion and friend
My children have lost the best father.
Michael was a very good man, who lived life to the full and loved to make people smile and he would have wanted to be remembered not with sadness but as the happy man he was. Michael always managed to light up a room and ever the entertainer would always tell a story about life…. He was full of enthusiasm, a true character, one of a kind…
Michael loved running, Tangle Foot beer and AFC Bournemouth, as well as walking in the Dorset countryside….I’m not sure if in that order…
Right now I can’t imagine life without him, I’m missing him terribly…
I want to say a heartfelt thank you to the nurses, doctors and staff at the Forest Holme Hospice for the extraordinary care they gave Michael and our family during his stay there. They made us feel at home and looked after Michael during the most difficult time of his life in a way that was caring, kind and compassionate. Words are just not enough to demonstrate my gratitude.
I love you Michael
Yesterday a friend came to visit. He was recounting how he had gone on his first sailing trip of the year, one which Michael had promised to join in. My friend said he felt that Michael should have been there, to which I was able to finally express how I actually feel every day since his death. I feel abandoned
I feel as if he should be here, I feel that he’s gone some place where we had not agreed he should go. I feel as if we should have gone on that trip together. I know this is irrational, I don’t wish to be dead, but I can’t help it.
I find myself in a constant conflict knowing that what I feel is natural but also feeling that is wrong to feel that way.
I’ve also been following the news of the disappearance of Helen Bailey, children’s author and Planet Grief blogger, with sadness and trepidation. She recently described how, five years after the death of her husband, she still has bad days where the ‘grief monster’ grabs her by the shoulder.
I’d like to join my voice in calling for Helen to get in touch with her friends and loved ones and truly hope she returns home safe and sound.
Living with cancer; because I refuse to get mad at it! 