🥰 ‘What do I know?’🥰

By Ed Sheeran

‘I’ll paint the picture, let me set the scene
I know when I have children they will know what it means
And I pass on these things my family’s given to me
Just love and understanding, positivity

I’ll paint the picture, let me set the scene
I know, I’m all for people following their dreams
Just re-remember life is more than fittin’ in your jeans
It’s love and understanding, positivity

I’ll paint the picture, let me set the scene
You know, the future’s in the hands of you and me
So let’s all get together, we can all be free
Spread love and understanding, positivity.’

My inspiration for this post is by way of an unexpected conversation with a lovely young lady. Typically my inspiration arrives at 6am or thereabouts but this happened later in the day.

I came across a page which was a reflective journey of an adult-child who lost their parent to cancer. This story made me really sit up and pay attention. As the person going through the physical sides of cancer we often are the ones who can be found at the centre of everyone’s concern. Where children are involved we often out them first as parents. This is a typical human instinct for most of us as. When they are conceived, coming into the world and they fall and graze their knees, we jump to their aid to make the hurt go away. As they grow into adults we wait in the wings to help them navigate their education and their first love. The pain that arrives when you are diagnosed with cancer in a clinic/GP practice/letter/phone call is like a thunder bolt through the heart! You have a few seconds to let the words sink in and then a gut punch, an absolutely stone crushing punch hits you in the depth of your stomach – ‘what is going to happen to my child or children? How will I break the news? When should I tell them? Should I tell them? How will they go on without me? Are they too young to be told and will they understand?’ The questions spin around in your head as if your thoughts are being separated from the mind in a centrifuge. The pain is so real, so present, so crushing. You stop thinking about yourself and fast forward your mind to life without you, your child or children living life without you and what this may look like. It is a space that no parent ever wants to visit in their thoughts. A real dilemma occupying every minute of the day post diagnosis. It is a silent dilemma that you dare not share with others…

It took me at least 5 weeks to break the news to my children, adult children. I just could not do it. Each time we were in each other’s company I felt like an absolute fraud but I just could not tell them. I cried, I tortured myself with dreadful thoughts, I just could not bare the thought of me not being here for them, adult children or not. I also did not want to disrupt their lives, I had no desire to turn their worlds upside down. I battled on, day after day, wondering how and when was the best time to open up and reveal all. For me the right timing was when I knew more, when there was a clear treatment plan for me to share with them. There was no way they would not ask me lots of questions so I knew I had to be ready with definitive answers where possible. For some reason I do not recall which day of the week I chose but I know it was midweek, during the day when I decided to tell them. The moment will stay etched in my mind forever. I didn’t know where to look, who to look at first or when. I just did not want this to have happened in the first place. This is where I was really angry with cancer. I wasn’t able to ‘read’ them, it was frightening, I wasn’t about to second guess but I knew their pain was deep. All that went through my mind was how proud I was of who they had become, so for this, I was incredibly happy . This thought presented me with a sense of peace. If I left this earth I knew on a practical and social level, my children were survivors, grounded in everything that I knew and had taught them. I knew they would have a good network to support them, to support each other. This was the only thought that brought me clarity and focus during this time. If I was going to get through this I needed to focus on wanting the best outcome, not just for myself but for my children.

Today when I came across the young person’s blog about their parent, it teleported me back to August 2017, at the dining table, with my adult children. It took me back to my thoughts about their busy, exciting young lives and how cancer had arrived to disrupt it, it made me think. Today when I viewed the contents of the page, adorned with beautiful videos and images it made me smile. Here was an adult child, reflecting on their beloved parent’s journey with cancer.  Whilst they were still hurting, they were being a real inspiration to so many people. Their story is real, it is raw, it was like so many other parent-child cancer journeys, far too many. At this point I was thankful to the young person, thankful that my children had another chance, grateful that this beautiful adult child had come to remind me of the importance of being grateful for my life. Grateful that this beautiful parent had left a lasting legacy in their adult child to share with the world.

Thank you, love and best wishes.

PS: You are anonymous on here as promised🥰

‘I’ll paint the picture, let me set the scene
I know when I have children they will know what it means
And I pass on these things my family’s given to me
Just love and understanding, positivity.’

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😉👄 ‘Work it out’ 👄😉

By Beyonce

‘How ya doin’ hug me baby
You know I don’t ask for much
But for a girl spendin’ time alone
Can be pretty rough’

My previous post, ‘Let’s talk about sex’, opened up the conversation in and around sex and living with cancer. Sex is a subject which is rarely, if not mentioned at all whilst you’re on this journey, certainly not on mine. So if laughter is deemed to be a good medicine, why isn’t sex? The truth is it is! Much like laughter, sex is an holistic remedy for many people. Unless you make the decision to purchase sexual services, sex is free and is there to be enjoyed. So why do I ask myself are people living with cancer and many long term chronic conditions, often excluded from this conversation? Why are we not being asked about the impact of which cancer can have on our sex lives? When we blossom into the wonderful world of adulthood as teenagers, we are taught about sex and reproduction. When we move into the sphere of post pregnancy, as women we are advised about sex through maternity services but when we move further along our journey and become chronically sick, sex seems to be off the table – literally! So why do we stop being spoken to at this stage? Why is sex suddenly a taboo? Why does sexual conversation become the elephant in the room? Don’t get me wrong, cancer can come along from the moment we are born, so it is possible for the same conversation to be absent as soon as cancer enters the arena at any stage of the journey. Health professionals may discuss the fertility of a child living with cancer with their parents or carer but do they enter into conversations around the world of sex? We can appreciate that saving the life of a loved one is of utmost priority but how will cancer treatment or radical surgery impact a child later in life? The answer is I do not know, perhaps someone could share their experience by commenting on this post.

Personally, I am 2 years post cancer op and sex has not been mentioned. Whilst I appreciate that not every patient wants to talk about it, some do, I do. We need to start talking, to learn how to navigate the mind, body image and existing and new relationships during and after cancer. We already have much to contend with so adding another layer of personal turmoil is really unwelcome and at times, unnecessary. If we have been through major surgery and/or cancer treatment which can be pretty tough, we need support to ‘fix’ the other side of us too -sex. Can you imagine how emotionally debilitating it must be for someone who previously enjoyed the pleasures of a healthy sex life pre-cancer? It can wreck a relationship, destroy the emotional wellbeing of the partnership and create social barriers to meeting new partners no matter what sexuality you happen to be. How do we explain our pain, our scars, our lack of confidence in our sexual performance, how do we do this? How do we support the partners to help themselves and the person living with cancer? Do we ask that sex is never to be explored again within their relationship? Are we saying that it is more important to think only of saving lives, that nothing else matters? If this is the case, why are we encouraged to return to ‘normality’ (whatever this looks like) to go and live your life when you are told you are in remission? This smacks of contradictory advice. If we think about the statistics on cancer survival, the rates are improving as more research provides us with innovative treatments. This means more people will live longer with cancer. Therefore, we must find a joined up approach within the healthcare sector to start having healthy discussions around sex- we must! If we continue to dismiss this important area of people’s lives, over time we will pay the ultimate price in increased mental health concerns, social isolation and rising costs due to GP and A&E visits.

Somebody needs to sit down and begin these conversations.

‘We can work it out’…

A huge thank you to a really supportive friend who recommended this track for the post, 🥰

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🥰🥰🦋 ‘All on me’ 🦋🥰🥰

By Devin Dawson

‘Yeah I know that the woes and the weight of the world can get inside our minds 
And be too much sometimes, I know
But baby don’t let the no’s and the ups and the downs 
From the rollercoaster ride beat you up inside
Baby don’t
But if you ever feel that way, 
Don’t you ever hesitate, ’cause
You got my number you can call on me
If you’re in trouble put the fall on me’
A reliable, dependable person, this was the very essence of who you were.
If ever there was something that needed some thought I knew you would dissect it pretty quickly and turn it into a more digestible summary. Today I was met with such a dilemma. Today I actually spoke out loud to you, knowing you wouldn’t be able to answer but no sooner had I done this – my answer was right there! I knew instantly what you would suggest. Such was the connection that we had, we knew that neither of us would lead the other to any harm.

Today was bittersweet as it was tarred with real disappointment but at the same time I was in the company of the most beautiful souls. Souls that you would have appreciated, entertained, they would have loved you- you would have been the centre of their attention 🥰

As I go forward, trying to get through each day with whatever the world decides to throw at me, I know I can still put it all on you…🥰🦋🥰