I didn’t choose bravery 

I belong to two private online forums, one for people diagnosed with cancer in their 20s, 30s and 40s, Shine Cancer Support, the other for people aged under 50 who are grieving the death of their partner, WAY Widowed and Young.

I’m yet to find one online forum combining both criteria, young cancer patient and young widow; I’m sure I’m not the only one going through the same circumstances but perhaps it would be too sad to find myself in an even smaller minority. [UPDATE September 2017]  I have since discovered that at least seven other young widows are going or have undergone cancer treatment, either whilst caring for their dying husband or since windowing…an exclusive club indeed.

In these forums we share our experiences in a safe, supportive environment with other people who are going through similar circumstances in their lives, without prejudices or fear of recrimination. It is remarkable how similar some of the discussions are in both forums. One that comes up often, and which seems to leave a lot of us riling, is people in general telling us how brave we are for carrying on with our lives, for still being able to function and I guess for not “having lost the plot”.

I want to dispel a myth, I didn’t choose bravery. The circumstances of my life just happened, there was no plan, heck who would plan such a life? Anyway, there was a time when I did have a neat little plan, an expectation which did not turn out as I’d thought.

But I digress, back to bravery.

No I am not brave.

Brave are the refugees fleeing war-torn countries, risking life and limb in the hope they will carve out a better life for their families in a far away land. Brave are the doctors and nurses who risk their health to care for sick people wherever their vocation takes them. Brave are those who speak out against injustice whichever form it takes.

I am sure there are many more worthy examples of bravery that you can think of.

No, I am not brave.

I continue with life as best I can. It is not perfect, and if ever you see me and have the compulsion to say “you are doing so well!”, please know it is just a facade, an illusion, the mask that I must wear everyday to make sure I am not left behind, because life still goes on. This is the performance I have become accustomed to so that I can make it through each day. As the saying goes, fake it ’till you make it.

This does not mean I never take the mask off or that I don’t stop performing, oh I do, everyday! And when I do, those around me get to see how brave really I am not. But I have had to plough through because there is no choice, because the world does not stop, because not carrying on would be cowardice, and that’s definitely a label I am not willing to carry.

#WearSomethingYellow day

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!

logo
Forest Holme Hospice

 

So on Friday 17th:

  1. wear something yellow
  2. take a selfie, post it on social media with the hashtag #WearSomethingYellow
  3. donate £1 to Forest Holme by visiting my Justgiving page, that’s it easy peassy, squeeze the lemon!

Surviving surgery 

So I made it!

I’ve undergone major surgery and have come through the other side.

I’ve had surgery in the past in fact six times in total, each one as difficult as each other and recovery time was always far too long for my liking. But to be honest the term “major” does mean that.

And whilst improvement in modern surgical techniques means I’m home after just ten days in hospital, it still remains that, as my surgeon put it, major surgery, and particularly the type I had, carries around a five percent chance of death. Ok that means that a lot of people make it but statistics don’t care whether you’re number one or number 100 in the queue, it can still be you who doesn’t make it.

My major surgery involved nine hours, two surgeons (bowel and liver), a specialist neuroendocrine anaesthesist, and all the other theatre staff, followed by six hours in recovery and 48 hours in a high dependency unit where I had one nurse assigned to look after me all the time. I had some machines attached to me monitoring my breathing, heart rate and blood pressure; others delivered essential pain relief, medication to stabilise my cancer (it’s temperamental) antibiotics, all of which I tried really hard to record in my drug-addled, sleep-deprived brain so I could recount it in this post.

I’m pleased to report however that within 24 hours of surgery I was helped out of my bed and was able to sit in an armchair for 43 minutes, and repeated it a day later, this time for four hours.

I’m battered and bruised, in a lot of pain, with more wounds than I care to count. But I’m happy to be home, in my own room, bed and clothes (no more hospital gowns).

I’m totally dependent on others doing everything for me. I can use the toilet by myself and that’s about it, for now*. I can walk 300 metres with a walking stick, although I surprised myself and everyone else by climbing the stairs in my house in one go but that was as much physical exertion as I could take.

The pain gets me down and I do have the right stuff to manage it, but it’s early days. At least I got a good night’s sleep for the first time in ten days.

*not quite true, I can clean my teeth, brush my hair and get in and out of a nightdress. Small mercies!

Running for survival

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.

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.

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
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!