😔 Week 1 CVD19 UK Lockdown- ‘Day in, day out’ ☺️

No track today…

We are fast approaching the end of week 1 of the UK govt lockdown. The advice remains: wash your hands with soap & water, stay indoors unless you need to go out for essentials- food, daily exercise (once a day) & medication, stay TWO metres apart from others and under no circumstances should we congregate anywhere! This is to help reduce the spread and protect the NHS staff & resources which at present, is overly stretched.

So where is the UK population now? Mostly adhering to the advice which is good to see. Long may this continue. Our NHS & other essential workers are out in the world, the supermarket employees, transport, deliveries, pharmacists, emergency services, charities, volunteers-day in, day out helping to keep the country ticking over. The least we can do is to listen to the advice and protect them as they work to look after US. Please listen if you wish to stay alive and that of your loved ones…

What of the people living with long term conditions and Cancer? Earlier in the pandemic, the UK govt pledged that life saving treatment would continue. As we have moved along the scientific curve of COVID-19, this message is continuously under review. Treatment is now dependent on a number of factors and will be determined between the patient and their consultants. I sincerely hope that we can all get some kind of support whilst we continue to walk in the path of Cancer whilst having to now dodge a ‘new normal’ of the COVID-19 ball! A new invisible co-morbidity. Most of us have been here before, that thing called social isolation, some of us are still present but now we have most of the world sitting alongside us. I have noted people not being able to cope with staying indoors together with the necessity of staying away from their friends and loved ones – this is an experience people living with Cancer do, have done and continue to do- day in, day out. This is by no means a critique of anyone, let me be absolutely clear on this, it is a social observation (the psychosocial in me). Perhaps this is where our community of Cancer self help resources can tap in and support people around us who are afraid and under strain with the lockdown. We can because we know, we can because we have, we can because we felt and continue to feel, we can because we know that smell of fear.

Reach out and support someone if you can…

https://www.goodsamapp.org/NHS

🥰❤️

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🥴 ‘Let it Be- Part 2’😔

By The Beatles

‘And when the broken hearted people
Living in the world agree,
There will be an answer, let it be.
For though they may be parted there is
Still a chance that they will see
There will be an answer, let it be
Let it be, let it be. Yeah
There will be an answer, let it be’

There is no song which you are truly worthy of, no love you should be attached to. You have arrived and destroyed lives…

I seriously do not know which I fear more, the Cancer I live with or Corona! This moment feels surreal. At times I find myself asking, ‘Is this real? Am I dreaming or am I dead?’ I just cannot get my head around it. I have watched many apocalyptic films in my lifetime and always found them fascinating but not now. Now it is no Hollywood film set, real lives are at stake and people have sadly lost their lives. They have gone far too soon, may they rest in peace.

I keep wondering what my ‘Clinic Dancing Partner’ would of made of this had he been alive. One thing is for certain, Corona Covid-19 would have been the topic of the day, as he was intrigued by human behaviour. When I feel anxious about the situation I just think of him calming the atmosphere with words of wisdom. I see him approaching me with the beautiful white Lotus flower I recently saw him present to me in my Mindfulness therapy. Was this the message he brought to me? Was this his way of calming the path before the storm? I may never know the answer to this but it gives me a real sense of inner peace when needed 💕🦋

‘There will be an answer, let it be…’

2020 ©

‘Mother Nature’s beauty at Kew Gardens’
Thank you for taking this photo my friend 🥰

🥰 ‘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.’

silhouette of man touching woman against sunset sky

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😱☺️ ‘I’m too sexy for my cancer’ ☺️😱

‘Im too sexy’ by Right Said Fred

I’m too sexy for my car
Too sexy for my car
Too sexy by far
And I’m too sexy for my hat
Too sexy for my hat
What do you think about that?

So, in my previous posts I dared to introduce the discussion on sex and cancer. I have absolutely no regrets! Do you know why? Some of us want to talk about sex, I am being encouraged to and be demanded to do so!! 😂

This post’s song has been kindly suggested by another supportive friend, thanks hun 😉 everyone is getting into it, cancer or not! This week I made a HUGE assumption about the topic of sex and I was so very wrong!

When we think of cancer we do not immediately think of individuals losing their sexual confidence, neither do we think of sex as being a priority, we tend to gravitate towards thoughts of death and suffering. My cancer Clinic Dancing Partner (rest in peace) was once visited by a friend to see how he was getting on. The first question he was asked was, ‘so how’s your sex life?’ My Clinic Dancing Partner fell about laughing as he relayed the story to me. I too laughed but when the laughter was over I said that his friend was pretty brave to ask this question but he had a point. When someone is diagnosed with cancer or any chronic condition we either clam up and ask no questions or we ask questions of little relevance. This is by no way a criticism of people who are trying to support you at a critical time, it is purely an observation as I too am guilty of this. Anyway we continued to discuss sex and what it meant for both of us post diagnosis. No matter how much pain or turmoil we undergo, the desire for basic human needs never leaves us unless it becomes hormonal, surgical or it is stress related- we will still grieve the loss of intimacy. Whilst the desire may wane the basic human need pops up from time to time. So what should we do? Pretend that we no longer desire or yearn for sex? Act as if we are Androids programmed to never desire sexual intimacy again? Who exactly are we trying to please here? Whose life is it? Sex is not illegal, dangerous (unless you’re jumping off the wardrobe to swing on the lampshade or not using protection where you should, such as condoms) or dirty so why do we clam up upon hearing the word sex? How did we all end up in this world? Our parents had SEX, yes they did! 😱😂

These days there are so many options available to enable each of us to participate in a healthy sexual lifestyle- there’s no need to forego your needs, basic human needs. If you have scars from surgery or external devices which help the body to function such as a stoma bag, how about experimenting with ‘dressing up?’ Who says that sex has to be butt naked, in the bed with the lights off? Who wrote that outdated manual? There are a whole host of fancy dress costumes, sexy lingerie and much more to disguise the areas which make you feel subconscious. Obviously you will need to discuss this with your partner so as not to cause any embarrassment if you suddenly jump out of the wardrobe dressed as Batman and your partner screams and runs out of the room! Communication is key to this new approach to your sex life being a success. Where you are seeking a new partner you have the option to look into like-minded people so you both know what to expect from the offset. If we can discuss bills and world news on a daily basis, we can discuss our sex lives! Bills and world news can be depressing yet we dwell in this space, having sex or discussing sex tends to bring the opposite set of feelings and emotions so why not talk about it? I can appreciate how cultural, religious and personal sexual beliefs can influence our approach to sex but when cancer is thrown into the mix, we should at least try to understand how hard and fixed personal beliefs can ruin a sex life and individuals.

If you decide to dress up, you do not want to feel uneasy or not know what to do next. How about designing your own ‘role play?’ The purpose of role play or dressing up does not have to end in sex or love making but fun and a sense of re-learning intimacy in your relationship. Have you ever wanted to be the hottest female actress playing Catwoman? Well why not explore the outfits she wears? Many outfits have ‘cut out’ sections in all the right places so you can indulge in sex without the need to get undressed. Some people may refer to this as ‘kink’ but to me it is what it is, and if it fulfils the purpose, then it has been a success. There are lots of trusted online sources to purchase. Dressing up as Catwoman may be a little extreme for some of us but there are other options such as masquerade masks or a bra across the eyes which may help with being shy or self conscious. Just think, behind this mask or bra lies all your fears, your partner cannot see them…

Try it out, explore, review and absolutely enter into conversations around using dressing up as a way to invigorate or re-ignite your sex life post diagnosis, remission or whatever the position as lots of us will remain in stage 4 for life…

‘Be ‘too sexy for your car!’ 😉😉😉😉😉😉😉😉😉😉😉

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🦋💓 ‘Better Man’ 💓🦋

By Westlife

‘I saw an angel, but they’ve hidden their wings, I know
Everyone’s got that special baby
Oh, I, now I only see you in my dreams’

Happy heavenly birthday on St David’s day. The day you were laid to rest last year. The day you moved on to the next life. 🦋

I still miss you, my heart aches at times but I get through it. Sometimes I want to run away from that thing called cancer but I can’t! Something, somewhere encourages me to continue moving forward helping others on their journey. Is it you? Something forces me not to let go when at times I just want my ‘old’ life back, I just want to be ‘me’ again. Perhaps this is not to be.

Since my diagnosis my journey has had several twists and turns. Despite the fatigue which hits me from five different angles I put my best foot forward. Not everyone understands exactly how hard it is to function on a day to day basis. They see you standing so you must be ok, if only they really knew…

Throughout this time I have not really focused on the need to do ‘self’. A lovely manager at a Macmillan hub has relentlessly followed up with me until she finally made me realise that I needed to look after my own wellbeing as well as others. Thank you 😊 This new method of wellbeing is hypnosis. At first I thought it would be like the stuff you see on tv but I couldn’t of been more wrong. The process made me so relaxed, calm, in fact it has taken me to a place where I keep seeing you. We meet briefly, you are happy, at times you just smile, I am happy. It is the strangest encounter because you are never with me, I always meet you during the journey and then we part ways. This latest episode involved a message and a gift, you gave me a beautiful white Lotus flower, a flower that does not survive as cut flowers but this flower head was very much alive as you smiled, told me that you loved me and left. Our meeting was not in the UK but in Hungary where we once walked along the River Danube. During hypnosis I was directed towards the sea but for some reason I visited the river where you walked towards me. Whatever the meanings are of these meetings they have brought me a sense of peace that you are ok.

Here is my gift to you, the Daffodil, a symbol of St David’s Day and one that remembers your special day last year.

‘Daffodils-a symbol of you 🦋’

Thank you for being ‘a better man’ 🦋🦋🦋🦋🦋