Aside

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:

  1. A newspaper cutting of an article decrying the extortionate costs of funerals
  2. The name of two hymns written on the back of an envelope, and
  3. An email, dated exactly one year before his death, confirming that our priest of 12 years would be happy to conduct “the funeral”

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.

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Dying matters

My cancer diagnosis

Originally posted on Facebbok 18 November 2015

Hello everyone…. There are some news I must share with you; some of you already know.

Those of you whom I haven’t managed to tell you in person I’m really sorry that you’re finding out this way…

On 6 October 2015 I was diagnosed with Neuroendocrine Tumours (NETs) a cancer in the small intestine with metastasis in the liver and lymph nodes.
I started treatment straight away and have been told there’ll be surgery (January/February) to remove the primary tumour and debulk the liver. Further treatment will be needed after surgery but I’m focusing on the here and now.

Most of you know that in the past 2 years I have accomplished great things, marathon, half marathon, 10k, triathlon… As well as raising a considerable amount of money for charity.

Running keeps me sane. My oncologist has encouraged me to carry on running and I intend to do so; although it’s frustrating as I’m starting to slow down and not able to run long distances any more.

I don’t believe in miracles and it’s been a long time now since I lost my faith in the existence of a deity or the purpose of religion; to those you who do have faith I hope you’ll still be my friend after such a revelation.

I understand how cancer behaves because of the experience we’ve had as a family with Michael’s own cancer. I’m also a realist but an optimistic one.

I trust my oncologist and other consultants have my best interests at heart; I also trust their knowledge and experience. I also want you to know that this is not a fight, nor a war, it’s neither a journey, I’m not a soldier and I have nowhere to travel… I’m a pacifist so the language of war does not inspire me.

People ask me what can they do for me and my family… This is a difficult one to answer, sometimes we ourselves don’t know what we need. But one thing is certain please do not become strangers; I might not always be able to reply to messages, it takes a lot of energy just to keep up with normal life, but please do not give up on us!

I also intend to have as much fun as I can, life is hard enough as it is, I intend to laugh, dance and jump for joy at every opportunity.

I’m signing off now must catch some 💤💤💤😴😴😴 have a big hug from me.

The melon baller 

Licensed by CC 2.0 Copyright Alan Levine on Flickr

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.

When Michael died

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

Stretch marks and belly buttons 

Yesterday I was told that I will be undergoing a bowel and liver re-section on Friday 27 May. Hearing this has brought a mixture of emotions, mostly terror and apprehension.

Don’t get me wrong, I’m very keen for this cancer to be whipped out of me really fast. The sooner the better. It’s invading my body, it’s alien and it operates on stealth mode causing my body to react in ways it shouldn’t. I want it out, it doesn’t control me but for as long as it’s inside me it behaves as if it has got right of first refusal.

I know surgery is going to hurt, and physical pain can have a detrimental effect on emotional well-being. I don’t feel I’m in a strong position emotionally so I’m just hoping I’ve been able to put enough in the tank to see me through this one.

The list of risks associated with this type of surgery is a long one! I’m not going to recount it here…I’m scared enough as it is, I don’t want to create even more anxiety around me and I’m pretty sure readers won’t really want to know. And if you do want to know, just drop me a line.

I will be in hospital for a whole week away from my children. I’m not relishing the prospect of being far away from them; they’re the source of a kind of love which brings strength to my heart. However I’m also aware that hospitals are intimidating for young people and I would not want them to feel uncomfortable or scared seeing me after surgery.

I just wish I wouldn’t have to be wrestling with these thoughts and emotions on my own. This statement is probably going to have some readers reacting with the usual “we are here for you”, “you don’t have to do this alone”, and I appreciate those sentiments. But it’s not that kind of “alone” I’m talking about. I refer to the alone in the sense of ‘without Michael’ and no one can fit in to his shoes.

I face a long recovery ahead. Although my surgeon and consultant are both confident that, because of my “yuff” and level of fitness, I should need around six weeks to get back on my feet, I won’t be “strong enough to run 10k” as one of them said; so a parkrun should be fine then!

Also the uncertainty of what will come afterwards, treatment-wise, depending on what they find once they open me up, is unbearable right now. I will have a chance to ask questions about the whole procedure but right now my mind is blank; it’s a case of you don’t know what you don’t know.

Call me vain, but I’m not looking forward to a big scar running down the middle of my tummy and the possibility that I will have no belly button afterwards. Never again will I complain about my tummy being scarred by stretch marks because as unsightly as they are, they are also a reminder that I bore three beautiful, amazing and loving children.

On the face of it all, stretch marks somehow seem preferable now.

The author’s belly button

Runner’s envy

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Another year of the London Marathon and as I watched on TV and tracked my running friends online I felt what is known as ‘runner’s envy’.

Searching the internet I couldn’t find an official definition for runner’s envy, so I am going to describe it as:

The desire or longing felt by runners when witnessing other runners compete in a race they themselves can’t take part in, either due to injury or through lack of securing a place.

I’m sure runner’s envy is not limited to the circumstances I’ve described here, however that is the type of feeling I experienced today.

On the other hand my runner’s envy was quickly satiated by watching the following newsworthy episodes:

  • Jemima Sumgong falling and eventually winning the women’s race
  • Kipchoge missing the world record by 8 seconds
  • Aly Dixon, Sonia Samuels, Callum Hawkins and Tsegay Tewelde qualifying for GB Team and Rio 2016

And of course as I write this post there will be many out there still running their marathon, with extraordinary stories to tell, raising millions of pounds for charity.

Maybe it will be my turn to do so next year; here’s to runner’s envy.

Abandonment….

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.

When even sunshine can’t lift the cloud

So today is a beautiful sunny day in Dorset…I’ve been able to appreciate it from my bedroom window; I can feel the warmth of the sun on my face.

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The view from my bedroom

My body aches all over, I’ve had a change in my treatment to deal with some of the most unpleasant side effects, but the new medication warns that muscle and joint aches are common side effects. I can vouch for that! Every movement is a huge effort.

Nevertheless I put on a brave face this morning to take my kids to school; since Michael’s death they’re finding the act of getting ready to go to school extremely difficult so I’ve figured that when I get up and encourage them to get ready they are more likely to go to school.

I returned to my bed to a very deep sleep, which has not taken away the achy feeling. So, although the weather outside is beautiful, a dark cloud hangs over me today. I think I’m going to need more than just sunshine to lift this one.

 

Aside

imageSo you know what they say, “lightning doesn’t strike twice…” Well, it’s a lie, or should I say a myth?

I was born in Venezuela where, by the Catatumbo river, lightning strikes not just twice but up to 280 times an hour… You don’t believe me? Read all about it and watch the spectacle.
So now I’ve got your attention here’s my story.

On 6 October 2015, two days after completing the Bournemouth Half-Marathon, I was given a diagnosis of cancer, more specifically Neuroendocrine Tumours (NETs) in the small intestine with metastasis (spreading) to the liver. The symptoms I had felt for the previous nine months were so common that my doctors were baffled, and to be honest so was I.

Up to that time I had been supporting Michael, my husband, who 30 months before had been diagnosed with advanced bowel cancer. You see, lightning does strike twice… Michael died on 15 January 2016; I now know he found it difficult to cope with the news of my diagnosis.

So this blog is about living, in every sense of the word, with cancer. I’m trying my best to stay alive for our beautiful children.

The views I express here are my own, unless of course I’m quoting another source in which case I will make sure to acknowledge it.

Thank you for reading,

Marbellys

When lightning strikes…twice!