Tag Archives: #glioblastoma

The Shadow of Strength That Falls Behind Me.

“The taller I stood in my vulnerability, the longer the shadow of strength that fell behind me.” That sentence by Beth Kempton resonates with me.

Six months have passed since G drew his last breath, ending his and our (the kids and I’s) ordeal that was his Glioblastoma journey. It was a journey to hell and back and then some.

In the midst of the journey that lasted for just over three years, it was impossible to recognise just how vulnerable I really was. Now six months on from the journey’s end, I am slowly coming to terms with the enormity of the whole thing. People keep telling me who well I’m doing, how well I’m coping, how strong I am… I don’t feel as if I’m doing any of those things.

I feel as though I am slowly but surely picking up the shattered pieces of “me”. I’ll never reassemble them as they were before. That “me” has gone forever. This version of “me” will be different. I firmly believe it’s impossible to watch someone you love to die slowly bit by bit, day by day, and for that not to change you.

It’s recognised that a Glioblastoma diagnosis is one of the toughest to receive. It truly is! These tumours are a death sentence from the moment of diagnosis at present. Hopefully one day soon science will advance enough to change that. For now though, there is no cure. Many tumours are too advanced at the point of diagnosis to even be surgically debulked or for any life prolonging treatment to be an option. In reality, treatment can only buy so much time and tragically that can be quite poor quality of life “time”. Apologies if that seems harsh but it’s the truth….

Throughout G’s journey, I knew I had to keep going. I had to keep going to work (albeit work was in the living room rather than in the office). I had to keep going to set a strong example for my son and daughter to follow. I had to keep going for my elderly parents’ sake to stop them from worrying too much about us all. I had to keep going for G’s sake. I had to keep going for me because I knew if I stopped, I would crumble.

I kept going…

I kept working full time throughout. I kept writing, finishing and publishing one novel then writing and publishing another. I kept blogging, never missing a week. I kept journaling because pouring my emotions and fears out through the words I wrote on the pages of my journal kept me going…and so it continued.

There were many complexities to my marriage. I don’t propose to dissect it here. No marriage is ever wholly perfect. Mine, all 28 years of it, was far from perfect. Over the past few years, I’ve come to realise that society assumes everything in a relationship is a bed of roses pre-diagnosis. The truth in some cases can be a very different story.

I promised G right at the start of the journey that I would support him and whatever decisions he made to the bitter end, and I did. My love and support never wavered. I can say that with a clear conscience.

Only now though as the shadows of grief start to stretch out behind me, can I begin to appreciate the mental, physical and emotional toll that this journey has taken on me and my children. I don’t often admit it but we’re each a bit “broken”. Certain aspects have left each of us suffering symptoms similar to PTSD, but I believe that time is a good healer and with time and unconditional love, I’m optimistic that we’ll be ok. Time will tell.

I’m not very tall so I’m not sure that the opening sentence from Beth Kempton truly applies but even if I don’t stand that tall, I didn’t allow the weight of the journey to render me so vulnerable that I broke. I’ll not lie, I came close a few times but each time I would turn my face towards the sun and let the shadows fall behind me, adopting my “Sunflower Philosophy”.

That shadow that now follows me through every day has changed too. It’s a shadow compromised of resilience, strength, stubbornness, determination, empathy, compassion and unconditional love. It’s a shadow that I’m gradually learning to be proud of.

March is Brain Tumour Awareness month in the UK – did you know that?

March is Brain Tumour awareness month in the UK…and I’ll bet you weren’t aware of that. (Ok, some of you might have been)

In general, I keep my private life out of my blog but this week I’m making an exception.

But first some facts….

Did you know that brain tumours are the biggest killer of adults under 40 and children?

Brain tumour research represents around 1% of the national spend on cancer in the UK. (The biggest spend is on breast cancer – £52M which equates to 7.76%)

In general, only 17% of people diagnosed with a cancerous brain tumour will survive 5 years or more. (This compares to around 70% for breast cancer)

Over 12000 people in the UK are diagnosed each year with a primary brain tumour, including 500 children.

Over 5300 people lose their lives to a brain tumour every year in the UK.

An estimated 88000 adults and children in the UK are currently living with a brain tumour.

I’ll pause here to let you digest these facts…..

The Big Green Gummi Bear, my late husband, lost his life to a brain tumour (Glioblastoma) in October 2023.  He was only 54 years old.

The Big Green Gummi Bear was first diagnosed on 26 August 2020, at the height of Covid. I chose not to share any aspect of his journey – our journey- via my blog as I felt it was something too personal and too raw to share. To an extent, it still is.

In October 2020 I reached out to MacMillan Cancer Support’s online community for support. I felt lost and scared and simply needed someone to hold my hand and guide me through the nightmare that was unfolding in front of me. MacMillan’s community was there for me and still is.  I was invited a few months later to train to become one of their Online Community Champions. It’s a volunteer role I fulfil still on a daily basis. I felt after The Big Green Gummi Bear passed away that it would be selfish of me to withdraw my time and support from that community just because I didn’t necessarily need them anymore. Supporting the users of that community has in fact helped me with the healing process we call grief. If something I say helps someone to feel less lost, less useless and less scared then, its worth the pain of ripping the scabs off these partially healed wounds.

Over the past few years, I have written several blogs for MacMillan’s community blog space that have been well-received.

To help raise awareness of the impact that a primary brain tumour diagnosis can have not just on the person with the diagnosis but their friends and family too, I’d like to share the links to some of these blogs here.

Caring for a partner with a brain tumour – a Community member’s story – Macmillan Online Community

“I’m fine”: how do you really cope as a carer? – Macmillan Online Community

How do you prepare to hear the news? Getting the results with member Wee Me – Macmillan Online Community

If you or a friend or family member has been impacted by a brain tumour diagnosis, here are some links that you may find supportive:

Macmillan Cancer Support | The UK’s leading cancer care charity

The Brain Tumour Charity

Brain Tumour Research | Together we will find a cure

Home – Brainstrust, brain tumour charity

Brain tumours | Cancer Research UK

Thank you for reading/listening

(image sourced via Google- credits to the owner)

Book Baby 8 update…..oh where to start….

The photo above is Book Baby 8..well as far as I have got with it for now. My original aspiration was to have it written and ready for release on 29 February 2024 but then “real life” got in the way and that’s not now going to happen.

As well as the two notebooks that make up about 40% of the first draft (best guesstimate), I have typed up most of that content. I’ll be open and honest- I haven’t written a word of it since 14 July 2023 and I haven’t typed a word since 20th October 2023.

I mentioned that “real life” got in the way….that may be a slight understatement. I don’t share too many details of my personal life in the posts on this blog but this post is one of the exceptions to that rule.

Cast your minds back to late August 2020 when the world was still pretty much in lockdown due to Covid. On 26th of August 2020, the Big Green Gummi Bear broke some news to me that imploded our family’s world. He had been diagnosed with a primary brain tumour and three weeks later, post-surgery, this was confirmed to be a stage 4 Glioblastoma. I’ll spare you the finer details. You can Google those at your leisure. Glioblastomas are evil tumours. It was a death sentence from the start. Only 25 % of people diagnosed with Glioblastoma see the first anniversary of their diagnosis.

And so began an emotional rollercoaster ride that lasted until 27th October 2023 when the Big Green Gummi Bear passed away peacefully in the care of our local hospice. Back in September 2020, he had been given 12-15 months to live but that wasn’t enough for him and he squeezed an extra 100 weeks into life.

Surrounded by family and friends, we celebrated his life on 10th November where there was laughter amid the tears. I hope it was a celebration that he would have approved of.

For most of that three-year emotional rollercoaster ride, I kept writing, using it as my escape from reality. I finished and published Book Baby 6. I wrote and published Book Baby 7. I started work on Book Baby 8…. but by mid-July I began to stress that I was making a mess of my first draft. Part of me thought about binning it but the more rational part said, “Pause” so that’s what I did. Conscious that I needed to feel as though I was still making progress, I decided to start to type up what I had written, setting myself small achievable word target goals.

Now, the goal is to pick up my pen again and finish that first draft. I’d like to think I can perhaps have it written by 29th February next year but now is not the time to self-impose deadlines on myself. Now is the time to heal and move forward as I take the first tentative steps away from that emotional rollercoaster and that is going to take time….

Please be patient with me and I’ll try to be patient with myself (something I am very bad it).

love n hugs to each and every one of you.

Coral xx