Melanoma and Me
The fight of my life
The story so far

Not all Superheroes Wear Capes

Quote of the day

  • ‘A hero is someone who has given his or her life to something bigger than oneself’ – Joseph Campbell
  • Real courage is doing the right thing when nobody’s looking. Doing the unpopular thing because it’s what you believe, and the heck with everybody.’  – Justin Cronin

Hero

When you look up the word hero in the English dictionary the definition is ‘a person who is admired for having done something very brave or having achieved something’. For me it’s hard to think of specific heroes, mine had always been sporting heroes or fictional heroes in books like He-Man or the less popular She-raa as I think that’s what was taught in school. Sporting heroes like Daily Thompson, Linford Christie, Sally Gunnel, Frank Bruno and Alan Shearer (I’m really showing my age here!!). Now I’m not by any means saying these are not heroes. These are true sporting legends that dedicated their lives to their sports and ones whom in 2022 most likely don’t have as many TikTok or Instagram followers as the two I’ve just googled top 10 TikTok followers ‘

  1. Charli D’Amelio
  2. Addison Rae

Whom I can honestly say I’ve only heard of 1 of them and that’s because of my kids. See heroes aren’t always the ones most celebrated or in fact known.

Heroes can make mistakes

At one point for many years in my 20’s my hero was Lance Armstrong many years before I even knew cancer would enter my world in a way it has. I was so in awe of this man whom had over come such adversity yet achieved so much in his cycling career. At the time me and Ste were so obsessed with this figure I had his book which I read and at the time was an achievement in itself as I didn’t read many books. I also remember we bought a load of the Lance Armstrong yellow bands to sell and donate to charity. It was our way of trying to help a friend who was diagnosed with a rare form of Leukaemia at the time. Not only had this man achieved so much he also happened to date one of my all-time favourite musicians and singers Sheryl Crow. For me this man ticked all the boxes.

When he was later charged in 2012 for a doping scandal, I felt somewhat betrayed. Although this man would never know me from Adam (sorry any Adam’s reading this) I couldn’t help but feel everything I had admired about was all based on lies. Now I don’t know why Lance Armstrong did what he did only he knows that and was probably in no doubt put under immense pressure to consistently perform and be the best. At the end of the day, he’s human and we all make mistakes and do things we regret but it’s how we turn those mistakes into something positive that shows true resilience in a person.

True Hero’s

‘A hero is someone who has given his or her life to something bigger than oneself’ – Joseph Campbell

See now to me true heroes are the everyday people who just go about their day-to-day business. The ones whom go above and beyond and don’t expect anything in return. Not the ones who buy a homeless person a happy meal and post it on social media with the slogan hashtag ‘humble’ or ‘be kind’. The ones who volunteer 1,000’s of hours to a cause or community they love. The ones whom go around picking up other people’s rubbish just because it’s the right thing to do. The ones who stay late when they should be at home with their family, partners or kids hours ago just because they were needed by (hopefully) a bigger cause.

When you look at the quote above from Joseph Campbell one person that springs to mind is actually my mum and I know that is so cliché’. But she has dedicated most of her life to being a nurse starting off as a young midwife then as a practice nurse. Often doing long hours, to which I don’t really remember seeing her, but she always made sure she left tea out for me and my sister (even if it was more often than not a salad with jacket potatoes or boiled chicken in the slow cooker with half a tub of black pepper shoved on). Did she do it for the money certainly not as we all know unfortunately what nurses get paid, she did it because she loved it. That’s why when she takes me out in town. I often winch about the amount of time it takes. As she literally talks to every Tom, Dick, Harry or Brenda, people that she has either delivered their babies or they have been a patient, or she has worked with them or more recently she plays bowls with them! Whilst I stand their struggling to keep up with the conversation, feeling dizzy and a bit of a headache coming on (put it this way if I had a glass eye it would well and truly be in a coma in these situations). But this Yoda like figure is still my hero and just so happens to be the best mum and grandma I could wish for.

Me and Yoda aka Mum

My Guardian Angel

From this………

I feel this blog wouldn’t be this blog if it wasn’t for a few heroes’ whom have helped me on this 5-year journey. One of them is my Oncologist Professor Ruth Board who in February 2022 was very deservedly named Honorary Clinical Professor. This remarkable lady has been with me on this journey since 2017 (somewhat like my guardian angel Ste said). It’s only recently I happened to say at an appointment something like ‘have you read my blog’ to which she said ‘no’ that I realised I either hadn’t told her or I had previously and she had forgot (or maybe thought it was sh!t and didn’t want to say). See as a patient you remember Doctors, Nurses, Oncologists, Surgeons so vividly. Yet you don’t realise that to them not that you’re just a number but they see so many people during not only their day but their career that they’re lucky if they get your name right.

For me I can remember quite vividly the Dr at ENT (Ear Nose and Throat) whom told me of my Melanoma diagnosis. I was on my own to which he was astounded but when I was told to come in to discuss the results, I wasn’t told to bring anyone with me so I just went on my own. The Dr who’s name I can’t remember just kept apologising and asked if I wanted to call my husband to which I said no as I thought it won’t change the outcome. I also remember the nurse stood in the corner with a box of tissues had a tear in her eye and offered me a tissue (I felt like saying do you want one). I also remember the skin care nurse whom happened to make me an awful cup of tea (I never forget a rubbish brew).

See as patients we can be quite selfish in that we don’t realise the impact it has on the people whom take care of us. We selfishly forget that these are also humans whom have their own families, relationships and everyday stresses to deal with outside of their not 9-5 jobs.

I remember Professor Board being on holiday when I had a really bad reaction to my Immunotherapy back in 2017. See my timings of being ill and in need of medical assistance always seems to be around

a. when people are on annual leave

b. on a weekend when no-one is available

Something I need to work on in the future maybe. I just remember as the days went on, I was getting worse and worse. I was moved to a side ward and there were a few times where I genuinely thought this was it. It felt like I was in a gold fish bowl not quite with it but had a distorted view of what was happening. People were coming in and out of the room taking lots of blood samples, there were talks about having an operation to remove my gal bladder but I sort of knew that wasn’t the right thing to do.

Professor Board whom was probably up until this point had been enjoying Pina Coladas on a nice sunny beach somewhere replied to emails giving recommendations on what it could be to the Doctor that was on duty at the time.  See at this time Immunotherapy was pretty new in the UK and I don’t think I’m out of term in saying that the reaction (which resulted in an extremely painful rash, swollen body, and stomach, extremely high liver function and being put on oxygen) I had wasn’t one they had come across before certainly at the Rosemere ward so they didn’t really know what to do.

It was only when Professor Board returned from holiday that she got me on the right medication that I made a full recovery. See I genuinely think she saved my life which I’m sure she has done with many patients and that’s not giving disservice to the amazing team that help and support her doing the job she does, or the doctors that were on duty at the time. It’s just that if she had just taken the sod it, I’m on holiday or 9-5 approach I might not be here to tell you this tale.

Selfishly I would like my oncologist to be in my pocket all the time a bit like a security blanket. However, that’s not possible and I have a new oncologist whom I have every faith in. Along with the fantastic skin care nurses (some of which have been there since the start as well), not forgetting the neurologists, doctors and occupational therapists that help me along the way.

To This……Me and my Hero’s

Average Joes

We can’t all be heroes like my oncologist team, Florence Nightingale or Marie Curie. But we can maybe strive to be better, kinder people. In that if we see people struggling offer them a hand. Maybe volunteer for a few hours. It doesn’t have to always be our money we donate. The most valid possession is our time and hopefully due to everyday superheores we have that in abundance.

Lessons Learned

  • Not all heroes wear capes some wear gowns and uniforms or invisible cloaks.
  • If I am ever given the opportunity to go on master chef. Boiled slow cooker chicken with black pepper will not be my chosen comfort food.
  • Giving time to helping others can be one of the most rewarding jobs
  • Look at your role models and people whom you admire. Maybe see if you can master some of those qualities.
  • Health professions can only do so much with the medicine, tools and time they are given. We have the responsibility to take care of ourselves too.
The story so far

The Second Chance

Poem of the Day

See It Through – by Edgar A Guest 1917

When you’re up against a trouble,

Meet it squarely, face to face;

Lift your chin and set your shoulders,

Plant your feet and take a brace.

When it’s vain to try to dodge it,

Do the best that you can do;

You may fail but you may conquer,

See it through!

Black may be the clouds about you

And your future may seem grim

But don’t let your nerve desert you;

Keep yourself in fighting trim.

If the worst is bound to happen,

Spite of all that you can do,

Running from it will not save you,

See it through!

Even hope may seem but futile,

When with troubles you’re beset,

But remember you are facing

Just what other men have met.

You may fail, but fall still fighting;

Don’t give up, whatever you do;

Eyes front, head high to the finish.

See it through!

1 Year Ago

This last weekend marked my 1-year anniversary since I had my operation to remove the tumour in my brain. I didn’t even realise this until the weekend had passed because it was Archie’s birthday and we’ve all been pretty rough for one reason or another but less of the tales of woes more into the tale of, well woe!

In order to remove the tumour, I was to have a craniotomy which in a nut shell (ironic I used that term). This involves cutting your head open to carefully get the tumour out. I know I’ve just done a miscarriage of justice there as they don’t just let any random Joe loose with a scalpel (well at least I hope not). Leading up to the operation I had to isolate which to be honest felt pretty crap as it was Archie’s birthday (ironically these also happen each year along with anniversaries) and I couldn’t do anything with him to celebrate. But I’m sure he didn’t even notice when my dad and Ste took him to some Ninja place with a few friends.

I tried not to think too much about the operation, I didn’t even read the patient pre-op information I was given until the day before. For me wasting time worrying on something that is inevitable was wasted energy. I needed to just focus on being calm and prepared. I tried to find a quote that best described this feeling and came across this poem by Edgar A Guest written in 1917 which I think sums up how I thought of the operation (minus the ‘man’ reference). See although I knew this wasn’t going to be the most pleasant of experiences it was one, I had to endure in the hope of getting the bugger out and one more step in the direction of surviving this shitty disease once more. It was something I had to ‘See it Through’ for that higher purpose it was my second chance at life. To have not gone through with the operation well I’m not sure I would be here typing away.

I remember a couple of weeks prior to the operation the neuro surgeon (whom was absolutely fantastic) telling me what was going to happen and did I have any questions to which I think I replied ‘I just want it out’. What I was most impressed with is she actually talked to me, not Ste who was also in the room. She looked at me when she was telling me what would happen so I fully understood. Not all doctors and nurses do this especially when you have difficulty with speech. This gave me confidence especially when she said she would be doing the actual operation. All the consent forms where there ready for me sign as time was no doubt of the essence. I was literally booked in a couple of weeks later for the craniotomy.

Operation Day

The day of the operation Ste drove me to the hospital. I don’t remember feeling nervous but I remember wanting to say a proper goodbye to the kids that morning just in case (well I don’t think I need to say why). I remember also wanting to say a proper goodbye to Ste (whom can be very deadpan at times) and didn’t even give it a thought after carrying my bag was itching to go.  One of the nurses tried to carry the bag (to which I think they were probably thinking how much shit has she got in here). See what they didn’t know is I’d had done a spell in hospital that turned out a lot longer than planned so I put in all my worldly possessions in the bag plus a few big knickers just in case. However, my most valued ones were a letter and a poem from Ste, Daisy and Archie. A photo of Ste and the kids in a frame and some good luck charms (the rabbit’s foot I thought I best leave at home for fear of spreading myxomatosis!). The letter I got out a few times in hospital which I can say honestly spurred me on to keep going and I will treasure forever.

Ste wasn’t allowed any further due to COVID restrictions so I got a hug and said goodbye.  I was due to be first up which if you ever have an operation is great as it’s less time without food. I often wonder if it is best to be operated on Tuesday to Thursday as Monday they could be rough from the weekend and Friday, they could be itching to get home or have a pint in the local. I say this in jest as I’m pretty sure all surgeons are extremely professional and hardworking and unfortunately for them saving peoples lives comes with a price tag of responsibility and a sacrifice to the things, we take for granted. You can’t well just down tools (or scalpels) come 5 o’clock. I ended up being second on the list as some elderly lady went before me. I think she was quite nervous I tried to smile at her which probably in hindsight made her even more nervous of the crazy grinning lady, with wild hair sat across from her.

I don’t really remember much after that. All I know is I got wheeled down in the bed to the operating theatre. There was some issue trying to get a canular in my hand which ended up in multiple tries the next thing I knew I was in a recovery ward with a nurse and the Neuro surgeon asking if I was ok. I remember just feeling really cold and shivering. Apparently, I had demanded that she phoned Ste and let him know how the operation went to which amazingly she did. I honestly don’t remember saying this.

I was later wheeled to a ward in my bed which was to be my home for the next few days. I was first in the bay and the nurse asked where did I want to go. I definitely chose a window bay. Even if the view is pretty rubbish, it’s something to look at. I’m glad to say I still had the top of my head in tack and was not wearing a bobble hat! I think I must have drifted in and out of sleep I woke up having the weird sensation needed the toilet but then realised I had a catheter fitted which isn’t the most pleasant of feelings if you’ve ever had one. So as soon as the opportunity arose, I got this removed but this had the downside you had to take yourself to the toilet or pee in a paper cowboy hat which having brain surgery isn’t as easy as you might think.

Blue Stockings gang

Later on that day another lady arrived and was put across from me then two other ladies. Little did I know that these ladies would be there to support me as I was for them in the next following days. These ladies were part of our Blue Stocking gang. See I’m pretty sure it was our friend *Catherine whom came up with the name (being she was the more intellectual and worldly of us all). See Blue Stockings was a term used for literary intellectual women in the 18th century whom held ‘conversations’ with men of aristocracy with literately interests (yes, I have just ‘googled’ that). It also happens to be the colour of the ‘sexy’ stockings you are given in hospital to stop you getting deep vein thrombosis while led in bed. Either way I think it’s a pretty good name.

See at the time we were all in hospital COVID restrictions were in place so we weren’t allowed visitors at all. All of us had different ‘ailments’ should I say, it wasn’t a cancer ward. I had just had a brain tumour removed (which later was confirmed was Melanoma), one had fallen off a horse and damaged her shoulder quite badly, one had a slipped disc and the other had auto immune disorders. For a couple of days, I hardly knew what Tracey looked like as I couldn’t turn my head nor could she!!

Some of the Blue Stockings gang

I think because we didn’t have visitors was mainly why we bonded so much and these ladies did so much for me and I’m pleased to say we still remain friends and keep in contact regularly now. I remember on a couple of occasions Shantell helping me. One occasion I can remember her calling the nurses as my head was bleeding (I didn’t even realise to be honest) the other occasions unfortunately I had, had focal seizures so she ‘buzzed’ for a nurse to come and help to which I was extremely grateful as I had never had a seizure before. One time I had been trying to write in my journal so had a pen in my had then I think someone had mentioned about the blinds so I got up to attempt to sort them out and had a focal seizure whilst stood up, which as a result ending up me spinning round still holding the pen in my hand. I could only imagine it looked like a really shit game of Air Pictionary to Shantell who was led in the bed across.

We had some good conversations about our families and nearest and dearest and despite being in there together for such a short space of time I was sad to see them go. *Catherine went first and seemed happy to go as she was missing her daughter. Tracey was next so that left me and Shantell together. 

I had got upset as I was told I had to stay in due to the seizures. To be honest I had to admit that the seizures did make me feel quite vulnerable as it was something I had never experienced before and yet ‘another’ thing to add to the list. Shantell knew that I was upset and decided to cheer me up with a ‘girls’ film night. This basically meant her getting an I pad and sitting next to my bed whilst we both watched a film. I can’t even remember the film name I just remember thinking it was such a nice thing to do and definitely cheered me up.

Signs from above

My matted hair
A sign from an angel watching over me maybe??

Whilst in hospital my hair had was extremely knotted and matted due to the staples and the blood and I couldn’t have a shower to wash it so I messaged my friend Donna to see if she could give my dad some detangling spray to try and get the knots out. I also messaged my dad to bring in some supplies (not drugs I already had plenty of these) but Coke zero for Shantell, Nakd bars for me and the detangling spray. He wasn’t allowed to come in but when he dropped the supplies off I looked at the detangling bottle and this is what was on it. I asked my friend Donna if she had put it there and she knew nothing of it. All I can think is that maybe someone was watching over me after all.

                Lessons Learned

  1. Sometimes friendships can be made in the strangest of places.
  2. Always have faith that someone is watching over you even if they’re no longer here
  3. Don’t play Air Pictonary if you’re prone to seizures just in case as no-one will be able to guess it
  4. Some of the most invaluable things are the most valuable in certain situations
  5. Don’t give up whatever you do see it through
The story so far

Longevity Water

  • ‘Grief is the price we pay for love’ Queen Elizabeth 2nd
  • ‘It’s not important how long you’re here for it’s the impact and ripple effect you have on generations to come that matters’ -R Cummings

Long Live the Queen

This past week has been a week that will have more than likely affected the whole nation arguably the world.  On Thursday 8th September 2022 we were given the sad news that our beloved Queen had passed away at Balmoral Castle surrounded by those she loved. Even typing this now (at 3.46am) I have a tear in my eye. Whatever your opinion on the Monarchy or Royal Family you cannot argue that this woman was a remarkable woman who lived her life serving her country and others. She was an inspiration to us all one that will certainly go down in history and I myself feel privileged to live in a time when she reigned as Queen.

See I think what has shaken the nation so much is that we thought she would live forever. We took it for granted like we probably do our own families that they would be around forever. Unfortunately, this is not the case as humans we are not immortal, we do not live forever. From the moment we are born we are living but also dying at the same time. Our life in this world is very short and it’s times like this we should use to tell/show the people we love just that, that we do love them. It’s great to see so many people doing that showing their respects to the Queen in many different ways travelling miles to lay flowers and queuing for hours just to walk past her coffin.  And to her family and our new King Charles 3rd (still seems strange saying that) in what must be an extremely difficult time serving the nation in such a public way whilst grieving for their own mother, grandmother at the same time (I think she would be extremely proud).

Family History

Family history is so important in understanding who we are, where we came from and can potentially help us in the future (i.e., medical conditions). I can understand why so many people are interested in genealogy trying to find out where they came from. It’s only recently I’m ashamed to say that I found out my dad actually lived in a small Welsh village Llangernyw near Conwy and that some of my ancestors are actually buried in the grounds of Saint Digain’s Church. Which is also thought to have one of the oldest Yew Trees in history thought to be around 4,000-5,000 years old. Now me as a QS/Commercial Manager I’m thinking that a big margin of error but I suppose no one can argue the fact (because their unlikely to be around) either way it’s pretty old and has been designated one of fifty great British Trees.

Me & the kids on the Yew Tree
Ste on the Yew Tree

Yew trees are associated both with death and immortality and I find it quite surreal that there happens to be one located in my families ‘back yard’ so to speak. Not only that it’s pretty amazing to look at and to think that this tree has been around for so many years and will more than likely be around for many more.

Longevity Water

It’s here in this village that my dad visited the church back in 2017 from my original Stage 4 Melanoma diagnosis. Has he been there before most likely I’m not actually quite sure I will have to ask, see that’s the key to finding out more about your family history is you need to actually ask, both my parents are of the generation that they just ‘cracked’ on so to speak and whether it’s because they didn’t talk much or as a teenager growing up I was more interested in going out and having fun than finding out about where I came from (not the bees and the birds) or a mixture of both. It’s only now in recent years that I’ve found out things about my family I didn’t know. So, a word of advice if you want to know more about your family just ask preferably with a nice brew in hand.

Not only did my dad go and visit the village he got a bottle of water from the well in the town and also wrote in the church book and no doubt prayed a little. This bottle of water has been in my fridge (correction has now been demoted to cupboard due to lack of fridge space) since 2017! Now when he first brought it, I did take a sip and would wash my hands and face with it before important scans. He has since been back in 2022 and brought more and safely labelled it ‘DO NOT DRINK’. I think this is sound advice for fear of;

The tap in the village where you can get water from
  1. Drinking it and potentially having some parasite grow inside me (although this could have potential weight loss which might not necessarily be a bad thing – I am joking obviously)
  2. Pouring on my face and potentially causing damage to my eyes and going blind (I think I watched a holiday programme once and this poor guy had washed his face and ended up with a massive parasite growing in his eyeball and having to have it removed)

I do however pour and wash my hands with it before all scans, appointments, operations. It’s a bit like a ritual I suppose along with certain things I may take with me to calm me down. I think I have mentioned this before in my previous blogs where if standing on one leg and hopping whilst sniffing a badger’s arse calms you down then do it who am I or anyone else to judge.

So, if anyone from UU is reading this, please could you advise me if this is safe to do so.  If it is safe, I might start bottling this water up a bit like Del Boy with Peckham Springs maybe I’ll call it Llangernyw Longevity Springs ‘The tears of the yew tree’ I think that has a good ring to it, don’t you think?

Visiting Llangernyw

I can’t remember when but we did go and visit the village and it was really lovely. I definitely recommend a trip to the toilet while you’re there this has got to be one of the nicest well-kept loos, I have ever had the pleasure of visiting, in fact don’t visit the loo’s they need to remain well-kept. It’s only that way because the people of the village take pride in it. There’s really not much there just one pub, one school and a shop. At the time we visited there was a hen party going on they were probably catching the bus going to live it large in Conwy.

The church which stands next to the yew tree is also nice I looked in the visiting book and saw what my dad had wrote some years prior. I’m not sure if it works but I will certainly keep using the water and having a bit of faith along with good old determination to get me through this once again.

Finding your Ikigai  

I recently read a really good book Ikigai by Hector Garcia and Francesc Miralles. Ikigai is Japanese and means to live a long and purposeful life. Something which I think we would all love to do much like our beloved Queen Elizabeth 2nd.

In this book they looked at villages which had the largest population of supercentenarians (those who live beyond 100 years old).  There is a village in Okinawa, Japan which holds the largest population of these supercentenarians or you could say superheroes. It’s somewhere given half the chance I would love to visit being I’ve always had an affinity for cherry blossoms, bonsai trees, buddhas’, martial arts, Japanese gardens, generally the food and culture and what I envisage as peace and tranquillity. Whether I will ever have that opportunity remains to be seen. So, for now I’ll settle on the cherry blossom planted in my front garden, the buddha statue I have at the back of the garden, martial arts movies, meditating and Wagamama’s as a close second.   

One of the village people (not the band) Walter Breuning at the tender age of 114!!! Was quoted as saying;

‘If you keep your mind and body busy, you’ll live a long time’. Food for thought for us, I think.

From doing these interviews the writers Hector Garcia and Francesc Miralles created ten rules of Ikigai ;

  1. Stay active don’t retire – this means work but not necessarily your profession. It could be attending your garden, helping the community
  2. Take it slow – by that I think they mean enjoy the moment less rushing about
  3. Don’t fill your stomach – 80/20 rule
  4. Surround yourself with good friends – laughter is the best medicine, socialise and surround yourself with people who lift you up
  5. Get in shape for your next birthday – something to work towards maybe?
  6. Smile – I always smile and say hello (not necessarily when down South though as on the tube this could appear to be over friendly)
  7. Reconnect with nature – go hug a tree maybe, preferably when no-one is watching
  8. Give thanks – gratitude I try to write at the end of an evening or more realistically in the middle of the night the things that were good about the day.
  9. Live in the moment
  10. Follow you ikigai – your passion and purpose

For me I try to do each of these every day or work towards each one, not every day I tick each one but that’s ok. I am also trying to define my purpose and passion in life which I feel more than ever is

  1. To live and beat this sh1tty disease and remain cancer free forever.
  2. To be the best wife, mother to my kids and daughter I can possibly be.
  3. To helping others through my writing and generally trying to be a goodish person (I’ll aim for 80/20 rule maybe 50/50 for a start).

I hope you all find your purpose and passions in life something that you can feel deep down in your stomach then you’ll know you’re on the right path.

Lessons Learned

  • Don’t drink bottled water that’s 5 years old and has been sitting in the back of your cupboard
  • Don’t wait to tell someone how much you care about them
  • Find your passion and purpose in life
  • If you really want to understand who you are and where you came from speak to family not only will it give you and understanding of who they are but might bring you closer together
The story so far

The Tale of the Three Amigos

A STORY OF A VERY LITTLE ‘DETERMIND’ GIRL

‘Though she be but little she is fierce’ William Shakespeare

One day many, many years (too many to mention in fact) like a million other children that day a tiny little baby was born 4 weeks early (first time for everything) weighing just 4lb 5oz. She had tiny little hands, a tiny little body and a little bottom as round as a peach and although we couldn’t tell from that moment, she had one of the most determined minds you will ever meet.

It was on that same very day that three other friends also found a themselves together a connection of three unlikely friends whom we’ll call the ‘Three Amigos’ their names were Brain, Body and Bottom. They don’t really know how they got together they just always knew they had been connected in some-way to this tiny little human.

As Brain, Bottom and Body grew they became the best of friends. They were inseparable, where one would go the other two would follow (usually Bottom being dragged along last). Brain was the serious one she often learnt things first while Body was the tough one and learnt things the hard way, often by trial and error. Bottom sometimes lacked a bit of motivation butt was always there when Brain and Body needed picking up. As they got older, they learnt so many different things about each other. Like how Brain could count to ten, and pat her head and rub her tummy at the same time (with a little bit of help the help from Body of course). Body liked most sports despite being vertically challenged. She had the ability to run and also swim lengths upon lengths as far as her little legs would take her. Bottom on the other hand well she could play an amazing tune on her bottom trumpet which made Body shake uncontrollably and Brain go slightly red with embarrassment. She also had this great ability to get rid of any poop weighing her down making them all slightly lighter and happier in the process.

The Wonder Years

As the three grew older they noticed bumps and lumps they hadn’t been aware of before. Body was more aware of this then any of the others and would often hide from embarrassment. She noticed she didn’t have long legs like the other bodies not to mention her wobbly bits and uncontrollable scraggy curly hair. She couldn’t help feel like she didn’t belong.

But then Brain pointed out her amazing strength she had despite being pretty small. She also reminded her of how she was good at most sports she turned her hand to. To which she replied but that’s because you’re always pushing me through and supporting me when I need it. Bottom also reminded her that there where lots of different bodies all different shapes and sizes. Some had bits missing or not working but found ways to work around this Bottom admired these other bodies the most. It just felt like that whatever the situation there was always rational behind it and the three friends would always be happy as long as they were together.

Then the teenager years hit them (and their parents) pretty hard. Suddenly the three who had always got along would often be found fighting. There was a lot of shouting, screaming and banging of doors during those years (it was something to do with hormones Brain said). Then they all discovered this thing the called giggle juice. This was a complete game changer Body would be often seen wandering quite unaware, banging into things. Bottom would be either on her arse on the dance floor or found either in the toilets not knowing what end the aftermath of this giggle juice would come out of. Brain however thought she knew best. Being head strong she would either be in the toilets arguing with herself in the mirror or doing things she would more than likely regret doing or saying in the day after.

The Serious Years

Then one day it was like a train had suddenly hit all three of them. There they were with these things they called jobs. Brain much to everyone’s amazement ended up buying a house all by her self she had knuckled down at school to study maybe with a few giggle induced nights and parties in between. She had met another body and was very happy together. They managed to have not 1 but 2 perfect children (this story is a story that’s for another time as it involves the birds and bees and maybe a stork). Brain knew that this in itself was a privilege but would be the most challenging and rewarding one of all time. They also knew they could ‘cope’ if they worked together.  Body just wasn’t looking forward to yet more changes and wobbly bits and Bottom just still couldn’t get over the fact that those two popped out of their other bottom!!

THE TWO MOST CHALLENGING BUT REWARDING GIFTS EVER

The Alien Invader

Life seemed pretty good despite the lack of sleep and having to do this thing they called a job in order to get things you want or need. This was much to Bottoms’ amazement as she couldn’t understand why people had to have the need for so much ‘stuff’ that when she thought really long and hard, they didn’t really need it as the best things in life were normally free.

By one chance encounter Body was having something checked out at the Doctors this was just a routine thing but then because something else was there she asked the Dr about that as well. To cut a long story short it turned out there was a lump in the neck that shouldn’t have been there and needed to be removed to find out more. Body was obviously worried and quite scared, Bottom just wanted to get the crappy thing out but Brain knew somehow that it would all be ok. This lump did turn out to be something it was cancer (skin cancer), (Stage 4 Metastatic Melanoma to be exact). All caused by too much exposure to sun of all things.

It wasn’t easy but the three amigos did what they do best, they stuck together. They came to realise that they all had a role to play if they were going to destroy this alien invader. It was the hardest thing they had ever done but the battle was won. It took some time but slowly Brain started to see the good things in the future and appreciate all that she had. Bottom had stopped lazing about and started to move again. Body started to love her body again although it wasn’t quite the same as before she appreciated all that it had done for her and how she had shown strength to repair. Bottom also reminded her of the inner beauty that shone through her. It felt like life was finally going to be ‘normal’ if there is ever such a thing as normal.

 The Alien Resurrection

Then one day not too long ago something inside didn’t quite feel right. Bottom had a bad feeling about this as it felt sort of familiar, Brain as always tried to rationalise the unknown. It turned out that the aliens had reappeared but this time it wasn’t in Body this time the aliens had appeared in Brain. This was a totally different ball game but there was a plan. They had to get the first big alien out first and then once Body had repaired, they then had to zap the other smaller aliens with a magic beam. It was a pretty tall task not just for the Brain, Body and Bottom but for the whole crew, it was all systems go. Body just wasn’t sure if she could go through it all again knowing how much it hurt the last time.

As they continued it started to affect the others but not in a way they had known before. Body started to become weaker and couldn’t walk very far. Brain couldn’t remember things and would sometimes struggle to talk or be able to listen and write. Bottom often panicked so much that she literally looked like she was going to explode. The battle had begun it was a tough one the crew did an amazing job of getting rid of the big alien and are still working tirelessly on the smaller ones.

Butt this isn’t the end

This isn’t how the story ends though. One day the three friends were sat together on the top of a hill looking out on the beautiful horizon. Brain whom had been struggling the most since this alien attack thought for a moment. She still knew somehow that everything would be ok as long as they were together and had determination, faith and hope. It was then that Bottom said one of the most profound things that had come out of her bottom in all the time they had been friends. It went something like this;

Bottom: ‘I think were quite lucky you know’

Body: ‘In what way do you mean?

Bottom: ‘Well when Brain had her operation who helped her heal her scar on her head?

Body: ‘Me I suppose in a way’

Bottom: ‘And when you couldn’t walk who helped teach you to put one foot in front of the other?

Body: ‘Brain’

Brain: ‘But we couldn’t have done that without you lifting us up Bottom’

Bottom: ‘That’s exactly right we all have a part to play to keep going and never give up. We’re lucky we have each other (she then turned and looked at the bag on Body’s back) Body what do you carry round in that bag of yours all day?

Body: ‘I don’t really know to be honest but it’s been weighing me down for some time now’

Bottom: ‘And Brain why do you have those chips on your shoulders?’

Brain: ‘I don’t know they’ve always been here I think sometimes I think it stops me from really listening and learning’

Bottom: ‘Right on the count of three I want you both to get rid of them’

Body and Brain released them both and watched as they rolled down the hill.

Brain: ‘Now how does that feel?’

Brain/Body: ‘Lighter’

Bottom: ‘Exactly! We don’t need to carry things around that weigh us down. Let’s not dwell on what has been or look too far ahead. Let’s just enjoy this moment. I know deep down as long as we’re together everything will be just fine I can just feel it. We can always get by with kindness, love and hope.

Brain: ‘Not forgetting our little friend who’s always been here.’

Body: ‘Ah yes Determination’

For Daisy and Archie whatever you do in your life do it with kindness, love, determination and hope.

All my love always Mum x x x

By Rachel Cummings 18th August 2022

The story so far

Destination Nowhere

The bit I wasn’t going to include

I wasn’t going to type this but then I realised that if I didn’t it wasn’t giving everyone the full picture and at the same time apologise for not typing sooner knowing that I don’t really need to apologise. It’s just that the brain is such a complex machine and sometimes it just needs a bit of a reboot (rest). Hopefully it will make sense later on in the blog but I had a bit of a seizure whilst away a few weeks ago. Since then, it seems to have set me back a bit in that I have struggled to be able to find the words and connect them to the keyboard which thankfully hasn’t been an issue previously. The best way I can try to explain is that it’s pretty much like I’ve blown a fuse somewhere and it’s just taking a bit longer that normal to replace with a new one. I have struggled with things like basic motor skills, handwriting and spelling although they slowly seem to be coming back. I will find myself not joining in with conversations as I can’t find the words that I want to say as quickly as I normally would do.

I started this particular blog before I went away in the hope that I would have a positive holiday story being the previous holiday had been a disaster, however that didn’t happen either. Although it’s taken me a lot of redrafts (I think this is about number 20),  at one point every time I tried to write it just didn’t make sense i.e. my brain, keyboard and thoughts just weren’t connecting like they normally do. I do hope this is just a temporary glitch, however if not please bear with me.

‘If mistakes weren’t meant to happen why was the delete button and back space invented on a keyboard, no one get’s things right first time’ – R Cummings

Love Rachel x

Quotations

‘A man travels the world over in search of what he needs and returns home to find it’ George Moore

‘Do not dwell in the past, do not dream of the future, concentrate the mind on the present’ Buddha

Destination Nowhere

It’s the summer holidays and the time when people normally take a well-earned break from work in order to recharge their batteries. It seems everyone has such busy lifestyles that they seem to forget that they need to take breaks every now and then. I used to work with someone many years ago and he refused to take annual leave I think it gave him a purpose I couldn’t understand this. For me I used to cherish the time I got to spend with Ste and the kids or the odd days off from work maybe to catch up with a friend. Don’t get me wrong I would have to do the double amount of work to play catch up before and after which often did make me wonder why I bothered going away in the first place. But once that out of office was on it was like a whole weight was lifted and I could properly unwind.

This year I think more and more people are going away and taking the opportunity to travel abroad as for almost 2 years this was pretty much impossible for most people due to COVID. For me and my family. Unfortunately, a trip abroad at the moment is pretty much a pipeline dream however I’m not losing hope for the future as I do want to see more of the world even if it’s a small city breaks or maybe even places we haven’t explored in this country. We’re also lucky enough that my parents have a caravan in North Wales so we can always use that more or less whenever we want from March to October it’s just the logistics at the moment with Ste working and not having very many days leave and me being unable to drive and sometimes not being fit enough to go.

Bad Holiday Luck

It seems we haven’t always had the best of luck when it’s come down to holidays a couple of examples being;

  • The year we decided to go to our friend’s wedding in Lake Como the kids were really young and we left them at home (not on their own obviously). We hadn’t booked on with the original wedding party and got our own flights at the very last minute (this being the first of many mistakes that were to occur that weekend). It pretty much started going wrong before we took off with some engine failure at Manchester which meant we missed the connecting flights, finally getting on the last ferry to Lake Como only to get off a find there are two stops to Lake Como and this was not it. It was pretty humid that night and not many people about so we started to walk in the hope of flagging down a taxi. Two hours later, swollen fankles with the heat I didn’t dare ask the obvious question to Ste of do you actually know where you’re going? To make matters worse the wheel on our Samsonite suitcase literally burnt off as if in protest leaving Ste to carry it on two wheels. We finally found a sister hotel from a booking refence who finally got us to the hotel in a taxi albeit several hours later. It was that late at night we missed the nice child free evening meal and just settled for a bottle of white wine and bread rolls on offer. The fun didn’t stop there for this trip I was sick on the day of the wedding and if anyone knows Italian weddings, they like a course (6 I think it was in total), it wasn’t that there was anything wrong with the meal it looked lovely. But it just kept on coming. I had to keep getting up to go to the toilet to be sick. Ironically, I’m pretty rubbish about being able to be sick. I’ll endure all the sweats and aches sometimes for hours but I’ll open my mouth and nothing will come out. I reckon it must be because we had it engrained in us as kids not to waste food!! Ste also managed on the same trip to lose his phone in the taxi on the way home to the airport. Luckily someone from the wedding party collected it at the hotel a couple of days later and brought it home. Having said all that we still had a great time with our friends it was a lovely wedding (what we go to see of it) and we did eventually get home.
  • The time we went to Devon with the kids. We had a great time up until the point when the car decided to pack in. We ended up spending a good few days trying to sort it out and taking it to a garage only to be told it couldn’t be fixed so had to find and pay for a recovery truck to drive it the whole 200+ miles back home. While we had to go home on the train.  Still having to pay to get the car sorted when we got home. I reckon a 5-star cruise to the Caribbean would have been cheaper for us than that holiday.
  • Another time on holiday one of the kids had an ‘accident’ at the side of the pool which left a bit of a mess to say the least and me having to warn people passing not to slip in it whilst trying to rush said child to the toilet to sort it out. Ironically later on that same day in the same pool some kid also decided to also have an ‘accident’ to which I found myself protesting a bit too much to the fact that it couldn’t be my child’s as it was certainly more solid and floaty as I pointed to it bobbing around the pool. We later found out that there was a case of food poising going round and Ste and our friend we had gone with ended up spending the last day of the holiday ill in bed.

There are plenty more stories like this which does make me wonder why don’t we just stay at home. We thought this year after a few disasters and COVID things we going to be different. Earlier on in the year we booked a couple of UK breaks away. Not too far just in case anything did happen in terms of seizures, appointments and scans. I’d like to say we really enjoyed them both but if I’m totally honest they ended up being a bit of how can I put this? A bit of a shit show.

Don’t Believe What you read in the papers!!

The first one was one of those holidays you collect coupons from the paper (we didn’t we just bought them from Ebay). It was pretty local and for some reason in my head I thought it was at another location we had been to before and enjoyed (I later realised this couldn’t have been further from the truth). After, booking we made the mistake of reading the reviews on trip advisor. It was only an hour away and it was only for the weekend so we decided to take the plunge and go after all how bad could it be? When we arrived at the gate the man stood there couldn’t have been more friendly. He told us to check in so we did and again to be honest all the staff were more than welcoming. He gave us our apartment number and we parked up. We were on the second floor of a square block of apartments. Someone had already hung their Man City flag on the apartment balcony across you know like they do when you’re abroad.

I tried to go with an open mind but the accommodation was pretty dyer to say the least. Ste took one look at me and knew I wouldn’t feel comfortable staying there. It’s not that I’m a snob or my house is that clean for that matter it’s just that I have certain ‘quirks’ which I think I’ve mentioned before. For example, I used to hate sharing drinks with anyone, would always put toilet paper around the seat when going public places or if we went away and the cutlery draw was dirty then I would have to clean it (in this case it was). I would have to ensure everything had been washed and surfaces wiped down beforehand. The apartment unfortunately just wasn’t clean from the kitchen, the sofa bed, the table, the bedrooms and the toilet. It had definitely been neglected on the cleaning front and over the years by the looks of it. It was that bad the kids had adopted the approach of it’s that dirty we’re not putting our bags on the floor. I decided to send them to the shop for cleaning stuff as they weren’t helping the whole situation while me and Ste tried to decide what to do.

We decided that we would stay for one night and use it as a base. The kids came back and I told them to eat their pot noodles (which they thought were a right treat) and sent them to the arcades whilst I wiped down the whole room including the front door and handle. When they did come back Archie was pretty happy being he had found the arcades and grabber machines. Daisy on the other hand decided she wasn’t going to stop in the room and asked if she could sleep in the car. At this point I thought who is this monster I have brought up then I realised maybe the apple doesn’t fall too far from the tree. See like me she’s comfortable in her own surroundings (squaller) and it needs to feel homely. May I also add at this point if you have seen Daisy’s room you would most likely question her objection.

So, after a few tears mainly mine as yet again I’d made a bad decision, we decided we would drive back home. Driving out of the ‘complex’ it reminded of somewhere between an abandoned power plant and abandoned 80’s holiday camp. The security guard who had only greeted us about 1 hour earlier tried to convince us and the kids that we would miss out on all the fun. He may have been right as I do love a good game of bingo and cheesy evening entertainment but like with most things as a family if were not all fully on board then none of us are. We can’t force anyone to do what they don’ want. The security guard opened the gate at this point nearly having a hernia lifting it as it wasn’t one off these fancy electric barriers. We drove out and decided we would take a quick stroll along the beach before we drove home. It was at this point we walked over the hazy sand dunes (someone was smoking weed) to see a beach full of people parked up families, young people with disposable BBQ’s, playing foorball. They all had one thing in common they were laughing and having fun and at that point a waive of guilt came over me which I carried all the way home and the realisation that people don’t need fancy holidays to enjoy themselves they just need the simple things in life.

I was definitely pleased to see my own bed that night and it did turn out to be a nice weekend, we had a day out at Lytham and then went to a steam fayre and managed to meet up with some friends there. Ironically, I think looking online we saved all in all about £80 quid for booking it that way and that didn’t include cleaning products, buying the vouchers or pot noodles. Should you happen to book there make sure you ask for apartment 38 it should be spotless.

Carry On Camping

We had a week booked at Drayton Manor this was a rebook of a holiday that I had to cancel last September when I found the start of my brain tumour diagnosis. To be honest Ste and I were both really looking forward to it. He definitely needed a break as hadn’t had one and I was looking forward to seeing the kids enjoy themselves. We were in one of these ready camps but it was literally right next to the theme park so it was a great location. We hadn’t got their until later on the Monday so we decided to book the theme park the day after. I obviously couldn’t go on many rides (I however did manage the steeple chase where the average age is about 6 and the river rapids which is probably more therapeutic than anything). The kids however had a great time and enjoyed going on a few rides and I enjoyed being chief bag holder. We went back to the tent and I had a rest while the kids went back to the park the plan was for me and Ste to go to the zoo part later where it would be a lot quieter and just let the kids wander off on their own being they’re both old enough now. It was all going really well up until we got a phone call from Archie. He had gone on a ride with Daisy which resulted in him throwing up everywhere (he’s never been great with rides or sick for that matter). Daisy being the caring sibling walked off and left him on his own as she can’t deal with sick. Archie got the hump as he was obviously slightly embarrassed at this point and me and Ste then got the brunt of it.

Next day it was Daisy’s turn to be ‘difficult’ she decided to get the hump over some comment I made in jest. But then continued with this several hours afterwards not only ruining a nice day we had had but ruining a nice (expensive meal in the process). It was at this point I tried to cheer Ste up and we walked off on our own to the hotel grounds and Ste decided to get a drink (up until this point he hadn’t drunk) we played cards and remembered the good times before we had kids looking at other kids behaving themselves wondering where we had gone wrong. (I know you always do that when your kids are being arseholes, 5 minutes later we saw one being an arsehole and I felt relieved it wasn’t just mine). Later on Archie joined us, Daisy was still pretty much set in the mood for the rest of the evening. We played a couple of games of cards and it was nice but we headed back to the tent not to leave Daisy on her own for too long.

It was then I started to feel ‘not right’ luckily we had already been in bed reading as we decided we had had enough for one day. I woke Ste up who knew at this point knew I was having a seizure. I tried to speak and just garbage came out (maybe not for the only time I bet some of you are thinking). He pretty much knows what to do now he rammed an extra dose of Keppra down me and just waited. I started to come round I think it was the brew that helped (I do love a brew). Ste didn’t say but I knew he was googling the nearest A&E just in case. I had to be escorted to the toilet as its then I’m not always in control of my water works or the ability to ask to be taken to the toilet and camping isn’t exactly the easiest place to have a seizure. I couldn’t have picked a worse time or worse place to do it especially as he had a couple of drinks. I just think the stress of worrying over the kids (teenagers) had got too much for me along with a few pretty busy days of noise and walking. In the morning the plan was to take the kids back to the theme park for another day in the hope to revive the holiday but to be honest we just thought it was better to cut our losses and get home.

It’s been a couple of weeks or so since all this happened and were all pretty much friends now but I am glad to be back home. Unfortunately, I’ve not been fit for much since and Ste’s holiday was pretty rubbish which for that I do feel bad. We did at least enjoy the theme park (well almost). Seizures are sometimes a bit like teenagers and adults for that matter in that you can’t predict their behaviour. I could have lied and said we had a great time but unfortunately we didn’t. I won’t dwell on it though as were family and we stick together through the good times and the tough times and there are always more good times to come. There will be more holidays in the future hopefully and if not day trips or even stay cations.

Lessons Learned

  1. Don’t rely on siblings to look after each other if there’s sick involved.
  2. You don’t need fancy vacations and trips to enjoy yourself. Stay cations can be just as good probably a little easier, safer in our case and a lot less expensive.
  3. Don’t book a holiday with the Cummings family unless you accept full liability that you may need multiple modes of transport (trains, planes & automobiles) and possibly a trip to A&E.
  4. Kids and adults can be unpredictable at times. We can all have crap DAYS but that’s just what they are we can’t beat ourselves up or dwell on them for too long as the only people that suffer are ourselves.
The story so far

All good things come to an end

Quote of the day:

  • Memories are beautiful as well as painful
  • ‘Children will not remember you for the material things you provided but for the feeling that you cherished them’ – Richard K Evans

All good things come to an end

This last week was a very testing week we sold my pride and joy campervan and I said my final fair wells to a dear friend Louise whom I’ve known for probably the best part of 20 years.

The campervan was collected early in the week and when the guy drove off. I have to admit that when I went inside the house, I did shed several tears. See I like to think that I’m not very materialistic, don’t get me wrong I’m certainly no monk but this van had been my pride and joy for over 3 years. I had invested a lot of time, effort, not to mention money into it. But for me the reason I was most upset was because we had bought this van when I had started to get ‘better’ on my 38th birthday as a treat for the immunotherapy working and my Melanoma disappearing. It was a symbol of succeeding and what great memories and trips as a family that were to come.

However, four years on and it was stuck on the drive like a battery hen with little movement, not living to it’s full potential as I had been unable to drive due to the brain tumours and seizures. So, we thought the kindest and wisest thing to do was to sell the van and let it be free (or free range) once more. The reason I was so upset was not because of the actual van because that’s just made of materials metal and wheels, but because of the memories we had made and could have made in the future. The places we could have visited.

Some of my best memories of our time with the van have been;

  1. When I went solo camping with Archie, I managed to put the side awning up all by myself (Archie will probably argue he ‘helped’ to do this) and at 5ft 1 this is no mean feat. On this same trip a bird happened to not only fly in the tent but actually shit all over the new inflatable chairs and tent carpet in the process. I’m not sure if it was an act of vengeance or panic but it was a mess to say the least.
  2.  When we first got the van and took a trip out, we stopped at the nearest services and got something to eat. I wanted to test out the swivel chair. It was pouring down with rain and Ste somehow managed to swivel the base the wrong way round and his feet were that wet it just made the whole situation worse. Now if anyone knows Ste, he is not what I’d call the most laid back of people and in this sort of situation you can’t offer tips of advice for fear of getting your head chewed off. I just sat in the back with the kids in complete silence wondering whether I should start my sandwich trying not to laugh. From the outside the van was certainly rocking but not in the way people may have thought.
  3. Me and Ste took a child free trip to the Lakes and went walking for miles. You know the one where you sort of remember why you actually liked each other before the kids came along and sucked all the fun and romance out of you both.

I am glad to say the van did go to a nice family with young children whom I hope will go on lots of adventures and make lots of memories on the way.

All bad things must come to an end

In life there will always be pain and suffering and this last week was certainly one of them. It’s often when I question religion and faith. All I know is 40 is far too young to die and to leave behind a fiancée and two beautiful children let alone a mum and dad, sister, friends and family. No-one should have to go through what she endured over the past 18 months, yet again to the shit that is cancer, this time it was another form (blood cancer https://www.dkms.org.uk/learn-more/blood-cancer/leukaemia).  How do you begin to justify that? Why do bad things always seem to happen to good people?

However, it’s the moments of happiness that does and will get us through. Just when you think you can’t endure anymore there are little snippets of happiness that makes us feel we can carry on. I can definitely say our girls group chats will never be the same again. There will always be that little gem missing. Things will hopefully get easier with time and we can look back and celebrate years of friendship the holidays, the drunken nights out, the meals and the concerts with smiles on our faces glad that we shared those memories together although they came to an end far sooner than anyone would have liked. And through those memories we and her family can make sure that her children never forget what a brave, fun and kind soul she was. I will save those memories to share for times when we do get together again and to celebrate birthdays or just to get together, just because.

Because in the end memories are worth far more than any van or house for that matter. We owe it to those who are no longer with us to live our lives and create as many memories as we can. Go to the places they enjoyed. See and experience the things that they wanted to do and never got the chance. In that way their lives will always have meaning and purpose.

If anyone reading this would like to donate in memory of my friend Louise, I know her family would really like donations to go to East Lancs Hospice who cared for her.

https://eastlancshospice.org.uk/donate

Lessons Learned

  1. Where the is happiness there will always be sadness but that is how we know there is love
  2. Regardless of religion and beliefs we can all strive to be better, kinder, happier people to have hope and to leave a legacy to those whom we love the most.
  3. Memories are the most vital commodity make sure they’re good ones.
The story so far

Trial and Error

Quote of the Day

‘I have not failed. I’ve just found 10,000 ways that won’t work’ – Thomas Edison

Do not pray for an easy life, pray for the strength to endure a difficult one.’ – Bruce Lee

Content

Since Phase 2 of this journey began my life has been pretty much about trial and error with regards to most situations. Especially since my operation and the radiotherapy. It’s often been in peaks and troughs where one week I’ll think I’m doing really well and then next week it’s often like a little Gremlin has taken the rug from under my feet and said hang on a minute don’t be so cocky get back in bed and stay there. This leaving me pretty wiped out and sometimes extremely low.

For instance, just today I have spent the majority of my time in bed feeling really weak and achy. Hence why I have decided to write this blog in the hope to actually achieve something today. It’s the after effects of a week that’s had some highs and extremely lows.  From unfortunately losing one of my dearest and bravest friends, to celebrating Ste’s birthday with some friends and getting my tattoo finished (sorry mum and dad). It’s been an emotionally tiring week for me and that’s I think when I struggle the most. That and listening to too many drunk conversations pretending like I haven’t heard the story several times before.

Social Butterfly

I wouldn’t exactly call myself a social butterfly I’m certainly not inundated with invites come the weekend but I’ve always been pretty sociable. I will always talk to anyone and say hello and I can even enjoy myself without having a drink and have done for years on and off having cancer. Since the operation and the radiotherapy though this has certainly changed a bit. I rarely feel comfortable going out to places I don’t know or more to the point they don’t know me. I’m also reliant on other people not just in terms of cadging a lift but also to act as a bit of a buffer for me when my words get stuck. As soon as I feel conscious of myself in that I think people are wondering why I am wearing ear plugs and/or ear defenders that’s when there’s like a switch in my head and suddenly my words won’t come out. I can be having a fluent conversation one moment (if you could ever call my broad Darwen accent fluent) then then next I’m struggling to string a sentence together. It’s the same when I get asked questions.

It’s like when my kids are lying and trying to think of what to say that will get them out of trouble the only difference is I’m often not lying (or am I??). I can also struggle listening to someone for long periods of time. This lack of being able to communicate and listening is known as aphasia it can be caused by a stroke, severe head injury, brain tumours (in my cause), even early signs of dementia. It doesn’t however affect your intelligence so when people start talking to me slower because I’m struggling to get my words out, I do often think ‘NOB’. But it’s not their fault to be honest they’re trying to be kind and helpful it’s just a lack of understanding in the situation and a lack in me being able to communicate properly.

Laughter is the Best Medicine

One thing I’ve always enjoyed watching is comedy programmes. When I was younger, I used to do a few little impressions or ‘skits’ as my mum would call them. I think the main ones being Victoria Wood’s Kimberley, David Bellamy crawling from a rock, Kenny Everett’s ‘All in the possible taste’, Frank Spencer’s ‘Oooh Betty’ and my lovely Nan with her Zimmer frame. Like the material it was relatively small and selective i.e.  just my family that would get the pleasure of viewing (some may say enduring) these shows. I used to love making them laugh seeing the smiles on their faces. This is something that I still love doing now but more within my writing I like to think that if someone is reading something that I’ve wrote or an experience I’ve shared and it puts a smile on their face or makes them laugh then it’s worth making a bit of fool of myself in the process. I also used to love going to stand up comedy shows Micky Flanagan, Peter Kay, Sarah Millican and John Bishop being some of my favourite ones. So, I thought a good trial night out would be to my local library theatre. It’s small enough that I wouldn’t feel uncomfortable, the tickets were relatively cheap and if I didn’t feel well, I could quickly get home.

The show must go on

The week prior I had had a pretty bad seizure. In that I had loss the ability to communicate and tie my shoes (all my motor skills had gone). Ste ended up rally driving me to A&E where I spent several hours waiting in a corridor for an MRI head scan. Thankfully everything was fine and I was discharged that night. Ste said it was like I’d been on spice. I mean if it was no offence to anyone but I certainly did not feel any of the highs probably more of the come downs.

This is why I wanted to do something and just be stuck at home. I was feeling pretty good the week after (probably more due to the steroids come to think of it) and if I’ve learnt anything you can’t put your life on hold for what may or may not happen you just have to test the water to see what you can do but not get too annoyed if those plans get put on hold because you’re not up to it.

We booked the tickets and asked our next-door neighbours Paul and Daniela if they wanted to come. We got a taxi into town so they could all have a drink and went to a nice bar beforehand. This bar also just so happened to have dance music playing at which point Ste said he could see I was struggling and thought ‘I’m in for a good night here’!!!

We had one drink and headed to the library theatre. If anyone has been to Darwen Library theatre you will know it’s relatively small and in all honestly can be hit and miss with the comedy acts but that’s all part of the fun. The compare is normally pretty good and often has been Justin Moorhouse. Hats off to anyone that can get up on a stage in front of a room full of people and not only try to make them laugh but try to not to ruin their night in the process (it’s a pretty tough job).

We walked in and headed straight for the back with our drinks from the bar. (Tip never sit on the front row as it’s more than likely you’ll get picked on). Going to our seats Paul saw someone he knew from work and started to bore him with shop talk. I tried to rescue the poor guy but he seemed pretty content having his ear chewed off. Daniela and Ste started to drink their drinks pretty fast, they had gone for let’s get two as we might die of thirst if we don’t as it could be a whole 45 minutes before an interval….it was then I thought I’m in for a good night here!!!

The compare came on it wasn’t Justin Moorhouse this time it was some Scottish ginger guy (who was ok to be fair). It was then I noticed one of my old primary school teachers Mr Jennings sat in the row in front, but I wasn’t 100% certain at this point. Paul finally sat down and I asked him if he thought it was, being we had both gone to the same school. In fact, I remember my first day in reception sitting next to him. (It must have been fate that he was destined to be near me and bore me forever by the way if he’s reading this, he will know I am joking). At this point Paul was pretty hammered and wouldn’t ask the bloke sat in front. Ste who obviously must have got pretty fed up with our childish tilly tattle tapped Mrs Jennings on the shoulder and asked if he was in fact who we thought he was.

It was Mr Jennings who was out with his wife probably having a good night up until this point. He said he remembered us and for some strange reason I decided to tell him about the misjustice I had endured some 30 years ago where I had been wrongly accused (bollocked I think was actual word that came out of my mouth) for doing something I hadn’t actually done. I think on this occasion it was wetting toilet paper and throwing it up at the ceiling and on the walls. I told him he had gone red with rage which I’m sure he will agree he was well known for this trait but he pointed out that it may have been from the red wine the night before. Which now having two children of my own I can totally empathise with. It was then he and his wife asked how old both me and Paul were and how long ago it was since we left school. At which point I was unable to answer not because I didn’t know but for me at the moment to try and work out dates/years from and to it’s almost impossible. Paul was no better at responding either but that was more due to being under the influence of alcohol. It could have been at this point Mr Jennings may have totally questioned his choice of career and 40 years plus worth of teaching! It was also at this point Ste had to step in and explain to his wife that I wasn’t well.

Always know your nearest exits

The next act came on and to be honest they can’t have been that memorable as I can’t even remember who they were. I just remember I was slowly starting to struggle more and more to the point I had now put the ear defenders on. It was then the interval where everyone makes a bee line for the toilets. I was stood in the que for the ladies with Daniela in front. She had gone into the next cubicle while I was stood waiting in the corridor for the next person to come out. Ste walked past and asked if I wanted another drink I said yes and he said did Daniela want one. To this I replied ‘Does a bear shit in the woods’ only then to realise I may have said it slightly too loud due to the fact I had my ear defenders on and that the now pretty long que of women maybe from the ages of mid-forties upwards may have also just heard. I turned round to notice the women behind me smiling.

The interval was over and the compare came on to introduce the next act. At this point I was really struggling in that my vision had gone a bit blurry and I couldn’t understand the compare. Like you do on a plane I started to look for my nearest exits which obviously avoided being picked out by the compare or comedian. It was then the next act was introduced and he had a guitar in his hand. I thought sod this I need to make my escape Ste had seen this state of panic in my face so knew I needed to go luckily, we made our exit out the back and went to get a taxi home. When we did my head was still ringing so I just needed to sit in a quite room for a bit.

The day after was a bit of a write off in the sense that I was really tired but did I regret going out no not at all. To be honest I had a good night although it was cut short it just felt good to be doing something I enjoy even if not in full. I just need to accept I can’t do all of the same things my friends can do now. However, I can keep testing the water dipping my toe in every now and then and see if things are improving and hopefully enjoy more moments that I can share with you in the process.

Lessons Learnt

  1. Laughter is the best kind of medicine
  2. Teachers may not always remember your miscarriages of injustice 30 years later so get over them now
  3. Should you want to experience Colin McRae rally driving then Ste is available to hire (helmets are not included)
  4. Challenge yourself and dip your toe in the water maybe even an ankle every now and then
  5. Be aware of your surroundings when wearing ear defenders