Quotes of the day

• ‘Be yourself and you’ll find your tribe will gravitate to you’ – unknown

• ‘If someone offers a life boat grab it with both hands’ – unknown

Tribes & Communities

I feel that everybody needs to feel part of a tribe or community. For me I’m lucky enough to say I have multiple tribes, whom especially over the past few months I have relied heavily on. These tribes are of different variety there’s my family, multiple friendship groups, the hospital tribe, my work tribe and my neighbours. All of which have been my life line over the past few months. Helping with things such as running me around on trips, getting shopping for me, walking Woody and just generally checking in on me.

These tribes are vital to my wellbeing and hopefully recovery. See you should never feel ashamed to ask for help when you need it. This is something I am slowly realising (it’s only taken me nearly 42 years). Grab that life boat with two hands and who knows one day you may be able to return the favour to those that threw you the lifeline when you needed it the most.

Now tribes don’t always have to be of the human variety many people much prefer animals to humans. I can see why because a. they don’t tend to answer you back and b. if you fart or pick your nose in front of them then they don’t judge you. Now for me I’ve always preferred dogs to cats. This goes back to when I was at primary school and my best friend at the time had a black cat Sammy although for some reason unbeknown to be (still to this day) they used to call her Hamish.

Now it’s no secret that I did not like Sammy at all and I think the feeling was pretty mutual. Not only would Sammy jump up at me whenever I sat on the couch but she would bite my right hand slyly walk past me whilst simultaneously pulsing her brown starfish at me as the final insult. Maybe Sammy sensed something in me that no-one else could detect or maybe she was just one evil fecker?

Either way my experience with her was enough to put me off cats for life and it always seems to be that cats know when you don’t like them as they seem to bother you more. For me with a dog you know what you’re getting especially with my whippet Woody.  He sleeps (quite a lot well certainly more than me anyway), he nudges you when he wants stroking and he looks at you with those big eyes as if to say ‘we’ve got this kid’. In fact, he has literally just jumped up on the settee (which he knows he’s not allowed unless there is a blanket on there and parked himself right next to me). They do say dogs can sense cancer and I really think that’s true certainly in Woody’s case.

Communities

Being part of a community is also essential to our wellbeing. This doesn’t necessarily mean your neighbours but it can be a sport or social club and by social I don’t mean social media. Although face time and social media can be beneficial and a part of our daily lives there’s nothing better than real face to face time. 

I’m so lucky in that I love where I live and feel a real part of the community. The people are so friendly there’s a few pubs and cafes all of which just a stone through away. We did move to the other end of town back in 2014 to what we thought was going to be our ‘forever home’. It was amazing and couldn’t quite believe we had moved into such a fantastic new and unique home. However, it was clear from the off set there were already a few disgruntled neighbours whom over petty insignificant reasons such as a delivery drivers blocking a shared driveway, a parking bay and a fence to keep our children safe and secure it was clear that we weren’t made to feel welcome in this ‘community’.

Which on reflection is a shame as I know for a fact that just on the doorstep are some beautiful surroundings and a great community atmosphere (should your face fit). I really do hope that the people who live in our old house have been made to feel a part of this community and are truly happy there. For me what I once treasured walking round the woods and the reservoir I can no longer do. Not because it isn’t beautiful but because of the negative connotations and memories it brings back.

Back in 2017 when I was diagnosed with Stage 4 Melanoma, we made what we thought at the time the difficult decision to sell our forever home and move back to somewhere where we knew the kids, who were young at the time could play out on an estate with friends and enjoy themselves. It’s simple things like that that meant the most to me, I wanted to see them laugh and play.

It was then that we just panicked as we didn’t really know what the future would hold. It just so happens this turned out to be the best decision we had ever made and with the help of the estate agents whom we had bought the house from they went above and beyond to help us. Karl Baxter at Hunters, isn’t your normal estate agent, he is a lovely person that helped us a lot, so thanks Karl. See most people when they know you are going through pretty shit times will do their upmost to help you and I hope one day that these people know that I would gladly reciprocate the favour should they need.

I’m now in an area with not only one of my ‘tribe’ next doors but surrounded by multiple friends and family. I always knew that my mum grew up on the village with her 4 siblings but it’s only just recently she mentioned that they once lived on the lane where my house is. Who knows maybe I was always destined to be here? I’m pleased to say I’m quite content in our ‘forever home’ even though you can’t choose your neighbours ;0).

But for any tribe or community to thrive it takes effort by all parties. There needs to be times when you ‘muck in’ and in return you will reap the benefits.

Lessons Learned

1. I am not a fan of a brown starfish nor am I of cats.
2. It might take a bit of trial and error but you can and you will find your tribe, make sure you love them hard (in a non-sexual way of course)
3. You can take the girl out of a trailer park but you can’t take the trailer park out of the girl!
4. If one of your only worries is a ‘large fence’ or not having access to your shared driveway then count your lucky stars especially now in the current world we are living in.
5. Sometimes the worse things that happen to us turn out to be the best things. ‘Fate’

Quotes of the Day

1. ‘Sometimes I have good luck and write better than I can’ – Ernest Hemmingway
2. ‘Sometimes I write better than I can speak’ – Rachel Cummings Feb 2022

Context

I recently read part of a quote from Ernest Hemmingway ‘Sometimes I have good luck and write better than I can’.   I thought about this and after a quick ‘google’ what I think he was trying to say is that he often writes but doesn’t always share his writing.  To be honest if I was you, I wouldn’t necessarily trust my opinion, being that I failed ‘A’ Level English Language/Literature by either getting a grade E or U at the time.  And before you ask no I’m not going to go up in the loft (or summons Ste to, as God knows what’s up there) in a mad search for my red and gold ‘Record of Achievement’ to clarify this (the ones where you put the fancy cream paper and took to job interviews that were actually just filled with blank fancy cream paper and little else).  Either way I know sometime later on I needed 2 A Levels to get on my part-time 5year Quantity Surveying Degree Couse, and English wasn’t one of them.

For me I’ve always been able to articulate my thoughts better in writing than my spoken word.  This has never been more prevalent since my recent Brain Tumour diagnosis and subsequently the effects of Brain Surgery and SRS Radiotherapy.

Brain Thoughts

I read somewhere that we have around 6,000 thoughts per day.  Prior to my recent Brain Tumour diagnosis, I reckon mine was already at a minimum of 10,000.  Since my diagnosis I think this has now multiplied.  I often used to say if you looked at my eBay watch list, Pinterest and Instagram accounts it would give you a good insight into the sort of randomness that often goes through my head on a daily basis.  Put it this way I think if I was to pay a psychologist privately, I could put them well into retirement age and possibly fund their children’s education.

When you think about it the brain is amazing, it is an organ that serves the centre of the nervous system (yes, I did just Wikipedia that then got lost in the complexity of it all).  It controls our thoughts, movement, intellect, heartbeat and breathing.  How Dr’s and Neurosurgeons understand all this, let alone operate and not manage to lose the top of someone’s head or leave their keys or some sharp object in there is totally amazing (for those that haven’t seen it please watch Mickey Flanagan’s Back in the Game Tour it’s absolutely hilarious –‘I couldn’t do your job in a million years!!’).

When you have a brain injury/surgery or radiotherapy your brain often experiences a lot of inflammation and damage.  As a result, your brain is often left having to work harder than normal or find different routes to do the same tasks.  For me I have experienced varying changes both physically and mentally.

Brain Tumours – So What’s changed

Since having brain surgery and SRS radiotherapy I have experienced quite a number of changes both physically and mentally I will list since the ones Post Diagnosis, Post Surgery and Post SRS Radiotherapy.  I feel the pre-diagnosis ‘signs’ I should go into in more detail in a different post to highlight any ‘warning’ signs that something isn’t ‘quite right’.

It was suspected through the initial MRI but not confirmed until Post Surgery that my tumour was in fact cancerous in that my Melanoma had returned albeit in a different way.

Here’s a list of some of the changes I feel I have experienced.  Not all have been consistent, there have been peaks and troughs and I am hopeful and thankful that some of them may just be temporary which I have been told can be up to nine months to determine if there is any long term ‘damage’, but I remain ever the optimist;

Physical Changes

1. Speech Loss –Whilst sometimes my speech can be fine.  I tend to be able to talk more fluently (if you could ever describe my speech as that) around people I know.  It seems to be when I am out in public places or asked direct questions that I really struggle.  I have something known as aphasia Aphasia Definition
2. No Filter Approach –In all this I have appeared to have mustered this no filter approach to what actually comes out of my mouth.  It’s not that I didn’t think these thoughts previously, it’s just that I would have refrained from saying them out loud for fear of upsetting individuals. (Come to think of this I’m wondering if maybe I should arrange for Ste and my Mum to have a brain CT scan?).  Unfortunately, those closest to me tend to suffer the wrath of this the most.  I often find myself saying really direct things like ‘do I really need to know that’ and ‘shut-up’.  This is when I’m struggling to concentrate or the constant talking is getting too much.
3. Weight – there have been obvious physical changes in appearance, my weight has been one of them which has fluctuated up and down.  This is probably a mixture of the cocktail of medication, steroids mainly being one of them. I have now what can only be described as a gerbil face.  It’s always been pretty round but now if it continues, I’m not sure you will be able to see my eyes at all.  However, I don’t try to focus on this but I do still try to track what I eat and eat healthy as I know the steroids, despite their side effects are all helping the process (trust the process)
4. Loss of mobility – since my latest seizure I have lost a lot of mobility and sometimes getting dressed and tying my shoelaces is strenuous enough.  On a recent trip away with my family (and well, deserved respite for Ste) I’m not sure my mum nor me envisaged at the age of 74 (her not me) having had two hip replacements herself, having to tie her 41-year-old daughters’ shoelaces.  My dads’ knees are what can only describe as ‘knackered’; so that just left my sister Sarah to help (so don’t be surprised if you get some knee pads for Christmas).
5. Muscle loss – now I’ve never claimed to be some six-pack gym goddess however, I’ve always been pretty strong and I’ve been known to push a 130kg prowler up and down a track (albeit in a sloth like pace), deadlift in excess of 105kg at home and full stacked seated leg press circa 95kg. This is mainly down to what could have only been described as “thunder thighs”. The only benefit I could see at the time would have been for trapping a pig in an alley way (if that’s an actual thing).  Now I’m just working on being able to stand up for longer periods of time without the need to sit down and the ‘pink’ resistance band slowly trying to build some strength up to the XXL.
6. Disturbed Sleep – Over the past few years I ’ve always tended to be an early riser wanting to make the most of my days often and getting up and going to the gym at 5am while the rest of the world sleeps.  I used to find this worked best for me as having to commute to work it meant I could shorten this time and hopefully spend time with the kids and Ste in the evenings, miss the traffic and hopefully have tea (not dinner) in the evening at a decent time.  I also found if I didn’t do my morning work outs or exercise, I would find a million and 1 reasons not to do something when I got home in the evening.  Now my sleep is totally disturbed I’ve currently been sat here writing this since around 3am.  I get to a point where I’m just wide awake and can’t sleep.  This again is most likely due to the medication and combination of headaches and random thoughts.
7. Tiredness – I often get tired very quickly this can be when I’ve done too much (which recently I discovered the hard way).  I can get tired just by someone simply talking at me, asking too many questions that I have to concentrate on and think about.  Too many unplanned visitors can send me in a flurry.  If I do too much, I subsequently suffer days later.
8. Potty Mouth – for some reason I have developed what can only be described as a potty mouth that you would threaten a kid to wash their mouth out with soap and water.  I tend to drop the ‘f’ bomb now more than ever, especially when put in stressful situations.  Ste however says this is one change he hasn’t noticed at home (I will leave you to take from that what you will).
9. Noise Sensitivity – This has been particularly bad of late.  I am currently sat here typing whilst wearing noise reduction ear plugs and over the head headphones trying to cancel out the alarm that’s going off on the street.  It’s not necessarily the volume either, it seems to be certain pitches and tones, too many different noises at once.  Some which currently seem to be sport on the TV, in particular football matches, the sound of my dogs’ nails on the flooring, my washing machine and microwave (although I am pretty sure they’re on their way out), any TV programme or film that suddenly has background music in, my kids listening to tik tock videos or you tube, workmen/women outside.
10. Shouting – According to my daughter I have a tendency to shout which I don’t always realise I’m doing.  This could be a combination of wearing two sets of headphones to try and cancel out the noise sensitivity and her being of the teenage years, where If you ask her to pick something up off the floor (for the 10^th time that day) you’re ‘shouting.
11. Light Sensitivity –this was particularly bad at Christmas with all the flashing lights.  We all know that too much screen time is bad for you however we all do it.  (I particularly worry about how my children’s generation will or have been affected by these devices.)  It’s things like social media and too much scrolling or unstable camera movements that seems to affect me most (food for thought maybe of what these devices are actually doing to our brains).  Those friends that do want to get it touch with me Whats App and email are probably your best bet.  I tend to put my phone on do not disturb on or mute things when having a ‘bad day’.  I really recommend everyone has a little ‘do not disturb’ phone time even if just for 1 hour.  Social media can be a great benefit, but surely it was designed to connect us to the world and make our lives easier, more accessible and not disconnect us from social interaction with our nearest and dearest.
12. Flatulence – Now if this passes the proofread from Ste I will be amazed as he’s never liked toilet talk.So, I’m not sure if it’s a combination of the mainly plant based diet, (I do eat fish), cancer, possible signs of early menopause (to add to the mix) or my age but there is definitely some wind that comes out at night.  I often wake up not only grateful to be alive but thankful that Ste’s eyebrows and nose hairs are still intact.  Combined with his Darth Vader like snoring (which with the noise sensitivity has now been magnified) and the recent Storm Eunice blowing a gale outside, it’s safe to say the ‘force’ is certainly strong in the bedroom.

On both noise and light sensitivity, I can only assume it’s a tiny insight on what someone living with autism or sensory overload may feel like and I’m thankful I haven’t had to endure this for long and that it will hopefully improve in time.

Mental Changes – what’s going on inside

Looks can be deceiving.  If someone looks ‘well’ we tend to assume that they are.  I am now all too familiar and hopefully more empathetic that not all illnesses can be seen.  There are the things that I find particularly challenging that I will try to articulate verbally to those I know however I hope that by writing this down it gives an insight into what someone with a Brain Injury/Brain Tumour may be suffering with despite on the outside they may look ‘fine’.

1. Memory Loss – For me this seems to be my short-term memory which has been affected the most.  My long-term memory seems fine (well I think it is).  We’ve all walked into a room and can’t remember what we went for, and this happens quite regularly for me.  I could have a thought of something I was going to do then it’s suddenly gone.  This is why Ste is the main point of contact for medical appointments.
2. Stress – I’ve always thought I was pretty horizontal and not stressed.  I seem to get stressed more easily than before which as a result my speech is affected.  I recently encountered a stressful situation in a local supermarket.  I now try to avoid this (for the time being) and have had to get Ste to do the online shopping.
3. Cognitive Thinking – My cognitive thinking has been affected and any more than 1 or 2 steps in a process then I struggle.  Trying to follow an instruction manual or a recipe is too much and what resulted in my last seizure.
4. Maths – I struggle to understand or comprehend basic maths i.e., money and change.  For which contactless comes in handy.  And for someone whose chosen profession involves finances and predominately maths this is really frustrating at times.

But it’s not all doom and gloom

Believe it or not it’s not all doom and gloom as there have been some positive changes:

1. Passion for hobbies as a way of therapy – I have now more than ever rekindled my love for writing, reading, crafts, and gardening programmes, especially since my mobility has been affected.  I have always had a love for repurposing and upcycling.  I think if you described me as a skip rat you wouldn’t be far off the mark.  I put this down to maybe watching too many episodes of Steptoe and Son in my younger years.  I would often go off in my van having arranged to pick up random items of furniture and pallets then have to hide them from Ste when I returned.  Much to Ste’s relief I now can no longer drive so the ‘ebay and upcycling shed’ shouldn’t be getting fuller anytime soon.  I often thought about doing my own series ‘Shit from the Tip’ similar to ‘Money for Nothing’ but a bit more Northern and rougher round the edges should we say.
2. Decluttering – Despite point 1 above I have also developed a need for decluttering and a ‘less is more’ approach to life.  In particular just keeping clothes that I find comfort in and give me joy.
3. More organised – I have a need to know what I’m doing each week (I have a weekly planner on my desk to help me) however the downside to this is a level of inflexibility.  If plans suddenly change, I struggle to recover from this and can’t think of the next step of what to do.  My OT said this inflexibility is quite common from seizure episodes and it’s like your brain has to go the long way round to get to the same destination which can tire you out.
4.  Punctuality – In my 41 years I have never been know for my punctuality. This is definitely a ‘Steele’ trait for one which we refuse to apologise for as there is always someone or something to blame our tardiness on.  When our time does come, I reckon we would need to book any funeral arrangements and make sure they are 30 minutes late minimum just to ensure that 1. We are actually in attendance and 2. People actually turn up due to our bad track record.

This recent need for punctuality must infuriate the crap out of my mates as for years they have wasted so much time waiting for me to turn up for various outings (for which I am truly sorry now the shoes on the other foot).  There are two friends who happen to be an exception to this rule, one is in Manchester and still in denial about her tardiness and hectic lifestyle. The second is my old work friend and still friend 21 years later who despite making a promise to be my pen pal from a holiday in France some 7 years before our paths were to cross again has just decided to start writing letters to me (much to my amusement). She is well renowned for her lateness and will always make me look prompt for any social event.

There however caveats to my punctuality, that is if I’m getting ready and someone asks too many questions I lose my train of thought.  I often have to write things down and tick them off so I know what I need to take and do.

What I don’t want to lose control over

There is one thing above most however that can change with brain tumour and brain injuries, and this is something I am desperate to try my best to keep hold of and that is my personality and hopefully humour.  Not because I think I have such a superior personality but because the friends and family who are helping me now in my time of need are the ones who utiliitmately accepted and loved me for who I am, warts and all.

Lessons Learned

1. Not all disabilities/illnesses can be seen.
2. There are some things you have no control over but you can deal with how you react to them.
3. If you ever find yourself in a situation where you need a pig trapping in an alleyway give me about a year and hopefully. I should be able to assist.

Quote(s) of The Day:

• ‘Money Can’t Buy You Life’ – ‘Bob Marley’ last and final words.

• ‘You don’t have to change the world to make it a better place. You just have to inspire others to learn from your mistakes.’ – Rachel Cummings

Mistakes I’ve Made

I’ve done some stupid shit in my life so far. If I was to list all of it, it would make for extremely long reading even for one of my blogs (succinct as I am 😉).

Out of the all there are a few random ones that spring to mind;

1. Putting my index finger in the lamp holder of a desk light and switching it on (probably about the age of 13 at the time).
2. Going running in a sauna suit wearing no bra in an attempt to get ‘fighting’ fit.
3. Going to a posh restaurant in Marlow, meeting Ste’s sisters, brother-in-law and close friends for the first time getting up to go to the toilet and falling flat on the floor face up only to have his mate stand over me saying ‘Oh Rach’. (In my defence I was extremely nervous and his wife had been plying me with white wine all night, how to make a great first impression eh?}
4. Sitting on the kitchen worktop of said friend’s house being slightly drunk, not putting my hands out to stop myself subsequently falling flat into the dog bed underneath. (No wonder Ste moved up North I think he wanted to ensure his relationship with his family and friends remained)
5. Getting a ‘five’ year temporary tattoo, that is still on my back nearly 23 years later.

The thing is we can’t dwell on the mistakes we’ve made only learn from them.  We need to live in the present using what we know. Sometimes the mistakes we make aren’t actually mistakes they lead us onto the paths we may never have been had we not done them. If I’ve learnt anything in this life is that no-one’s life is a linear path. There are peaks and troughs which at your lowest points at the time you think you can’t recover from but you can and you WILL.

Lessons I’ve Learned

1. Going running in a sauna suit wearing no bra then jumping in the shower can be extremely painful (think papercut on your nipples and your probably not far off).
2. Not to put my finger in anything electric ‘just to see what it feels like’ – (maybe explains the frizzy hair)
3. Not to sit on any kitchen worksurface whilst drunk.
4. No tattoo is temporary however, these make for great stories as do our scars they are part of our past.

Over twenty years ago two of my closest friends decided we wanted to get a tattoo but weren’t quite brave enough to get something that we may later permanently ‘regret’. Off we popped to Affleck’s Palace in Manchester. We each decided that we would have them done on our backs (‘tramp stamp’ I think it’s known as not that I agree with this term especially as I have one). Anyway, my two friends quickly chose their designs and got it done, one made a bit of drama out of it, (those that know will know whom) which resulted in a search for sugar and a can of coke and thankfully not a trip to the hospital. I however am Miss Indecisive as ever took forever choosing my design and proceeded to colour in the pattern on the ‘professional’ printed out design.

I’m pleased to say like my tramp stamp one friend still has my back (literally) and one of my lifetime best friends with a friendship spanning over 30 years and maid of honour at my wedding. The other my little friend (the only person shorter than me) unfortunately passed away to cancer at the tender age of 23. One day in the not-too-distant future I hope to get this tattoo covered up and made bigger and brighter than ever. Not to forget or regret but to represent me now, scars and all and maybe a little tribute to those that I hold close to my heart.

Mistakes I’ve Made Which I Regret

There are however some mistakes I have made that I truly regret knowing what I now know and this is what I want to articulate to you in the hope that you can make your own informed opinions and hopefully learn from my mistakes;

• NEVER to go on a sunbed or if you have/do STOP.

At around the age of 16/17 I used to go to the gym quite regularly. This was around the time I was to go on my first holiday without my parents and a big group of friends. It was around this time the pressure was on to look my ‘best’. Ironically, I would go to the gym on a weekend and afterwards hop on the sunbed for not long but enough to get my skin ‘prepared’ for the forthcoming holiday. Little did I know the long-term damage I was doing to myself in the process.

• Letting my skin get over exposed to the sun. Again, this is probably most prevalent around the late teenage years when regularly putting sun cream on wasn’t a ‘thing’ nor was wearing factor 50 or UV protective clothing. I remember going on my first holiday and applying baby oil on my skin in the hope of looking as tanned as my other mates at the time.

I did however always wear pants, full on length dresses long sleeve jackets unless on holiday not because I was worried about my exposure to the sun but more because I was particularly body conscious at the time. When I look back on those pictures, I would love to have that figure now maybe with the exception of the blonde frizzy hair though.

• The last mistake I regret is not seeing the warning signs or doing anything about it when those closest to me were suffering with their own demons until damage had been done.

Food for Thought

One point I’d like to mention for those that have seen my complexion yes, I am and have always been extremely pale and had lots of freckles and moles.

However it’s not just people with fair skin that get skin cancer or subsequently melanoma Cancer Research – Causes of cancer. It’s over exposure to the sun i.e., sat in a beer garden on bank holidays enjoying ourselves (rightly so) and not regularly applying sunscreen. It’s not consciously thinking at the time of the long-term damage we could be doing to ourselves because were too caught up in enjoying the moment. I’m not saying don’t enjoy that moment but if applying sun cream regularly to ourselves and our children was more at the forefront of our minds then it would be as natural as going to the toilet.

It’s probably a well unknown fact that one of the greatest musicians that ever to have lived (and who just so happens to be one of my favourite artists) Bob Marley actually died from Malignant Melanoma (accrual lentiginous) in 1981 at the age of just 36 which started in his toenail. I myself didn’t know this until recently.

Coming to Your Senses

I did in my later teens come to my ‘senses’ and get some rather dubious looking moles and skin tags checked out and removed. These however all came back as non-cancerous. It was at this point that I stopped using sunbeds and I’m pretty sure spray tans were the new ‘thing’ so I opted for that. I often used to go on holiday more tanned than I would return. (For information you still need to apply sun screen having had a fake tan).

Now for the serious stuff bear with me….

Hope for Change

There are many things I HOPE for and CHANGE is one of them.

On point 3 above the ‘demons’ I am referring to is mental health, the issues and subsequent addictions associated with them.  I’m pleased to say that more seems to be being done to address this. Employers are now focusing on employee’s mental wellbeing more than ever (it just so happened that most employers (not mine as they were already pro-active on this front) it had to take a global pandemic for them to actually do something about it). Doctors are recognising it more and more (however this did lead to a mis-diagnoses from mine but that’s another story). More groups and communities than ever are setting up focussing on Men’s Mental Health and reducing age old stigma that men aren’t allowed to talk about their feelings and need to be the ’strong ones’. Change for me means taking a step back from my own issues every now and then and take the time to ask the people I care about how they are really feeling but actually listen and if they don’t want to talk that’s fine just let them know that I’m always there should they need.

Let’s not wait for anything to be a global issue before we actually do anything about it. Let’s be more proactive in things that could affect us and our future generations.

Change in Our Approach to Sun Damage and Skin Cancer

For me and what is obviously most important to me right now being that my Melanoma has returned I would like to see Change in our proactive approach to sun damage and skin cancer (if you’re just reading this for the first time maybe see my two previous posts When Lightning Strikes Twice and Miss-Independent) as I wouldn’t want anyone to go through this shitty disease.

Here are a few of for what it’s worth my suggestions for ‘Change’. 

1. Educate the young

Climate change means rising maximum temperatures which will more than likely see cases of skin cancer in the future. I often cringe when I see pictures of children who have been burnt on sports days or bike ability courses.

Thankfully, under the new PHSE (Health and Prevention) Curriculum which came into force in September 2020, all English primary schools must now educate pupils about safe and unsafe exposure to the sun and how to reduce the risk of sun damage, including skin cancer. (Source https://www.sunsafeschools.co.uk/)

However still many of these initiatives are optional not yet mandatory such as the installation of sun screen dispensers (similar to those you might see in theme parks and zoos). If we can quite quickly make mandatory the installation of hand sanitizers in schools and face masks, along with singing ‘Happy Birthday’ whilst washing our hands due to a global pandemic then why too can’t we install sun cream stations in our schools.

And if ‘Nitty Nora’ was a regular visitor in schools in the 80’s why not ‘Dotty/Derek the Dermatologist pay them as visit as well. Hopefully this will then educate us not to make poor decisions later on in life and over exposure to the sun.

2. Banish the beds

The current legal age limit to go on a sun bed is 18, why can’t we increase the age limit to 25. Or even better in a world where climate change is key priority ban them all together saving energy not to mention NHS funding in future years. Those shops that agree to this, offer them funding options to set up fake tan booths should they need help with promoting sustainable eco-friendly products.

Brain Farts

• Shit all this[RC1]  was all bit deep and meaningful and I appreciate there is so much I don’t understand in my simplistic mind, politics and red tape is certainly not one of my strong points (people far more educated and clevererer (this time it is intentional Jan 😊) than me will no doubt offer their two penn’orth.

• If you’ve managed to get to this point then thanks, I did warn you to have a good brew in your hand when reading my blogs. The trouble with brain tumours and thoughts is that it’s a bit like farts once you release one you subsequently can’t stop the others from following through.

Take care

Rachel

x x x

Quote of the day

The grand essentials to happiness in this life are something to do, something to love and something to hope for. – Ikigia – The Japanese Secret to a Long and Happy Life

MISS IN-DEPENDENT

So today it’s Valentine’s Day.  As a couple we’ve never really celebrated. Ste’s doesn’t like to be told he has to comply with certain days (come to think of it he doesn’t like to be told to comply any day), although over the past fear years since being ill I have noticed he has bought flowers on more than one occasion at Valentines, to which I bollocked him for spending too much money on proper ‘florist flowers’.

It’s not that I don’t like flowers I really do however I much prefer supermarket ones or supermarket plants. The brighter colour the better Gerberas, Lilly’s and Orchids are my particular favourites. And I don’t really like receiving them on Valentine’s Day either I like receiving cards or flowers on random occasions just because someone thought you deserved them.

So, for this year I’m just quite happy with a card for me the funnier the better and maybe if an M&S 2 for a tenner is still going then that. Not because it’s Valentine’s Day but because it’s M&S food and let’s be honest I’m not sure what they do with it but it’s like it’s been through some beautiful ritual and it’s pretty damn good (other super market brands are available).

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Caring for someone

I have always been Miss Independent but now I’m totally dependent on the support of others Ste, my mum and dad, family, friends, parents of Daisy’s friends who drive her to school and various clubs in the evenings, not to mention the team of ongoing medical professionals. I am totally lucky to have that support.  See you don’t have to shower people with expensive gifts to show that you care just being there and supporting them in their time of need is enough. Over the past six months Ste has more than shown me this. Throughout my recent diagnosis he has been my main carer whilst working from home full time, football coaching twice a week and looking after two good but sometimes testing teenagers. It can’t be easy and sometimes leaves me feeling like a burden and subsequently end up doing too much that I shouldn’t be doing.

His work (Bupa) I am pleased to say have been really understanding and supportive throughout this and it was through a consultation letter from them that I was able to get the urgent MRI I needed arranged so quickly with my existing oncologist team which lead to the discovery my Melanoma had returned in the form of three Brain Tumours (thanks Jan the first typo in the last blog was not actually intentional 😊!). A week later I was signing pre-op documents for Neurosurgery to remove the larger one at Royal Preston Hospital scheduled in two weeks’ time.

First time round with my diagnosis and treatment this certainly wasn’t the case. Ste was working in the IT department of a local Refrigeration Company he had not long been there and it’s safe to say when we needed their support it wasn’t there and they dismissed him for spending too much time on his phone.  The irony of this is that the reason he was on his phone so much was to the benefit of the company doing testing as they hadn’t issued him with a company mobile. Had his manager bothered to speak to him and ask him this they would have known. Subsequently this was one of the best things that has happened to him though as he now does a job he loves (he’s still an IT nerd) and the people there care about him.

Caring for someone with a Brain Tumour

I’m not sure if this is common for carers of people with Brain Tumours/Brain Injuries but in my opinion (for what that counts) these are the things Ste has had to take on board to help me;

• He is the main contact for all medical appointments as this is something I struggle with
• When I speak on the phone, I have had to have him in the background to help. I have been known to fail basic security questions when having the information in front of me despite him pre-warning the caller of my state.
• Drive us everywhere. I am now no longer able to drive which is something I loved (as is a love of cars thanks to my dad).
• He organises and schedules my pills for me and tells me what time to take them
• Makes me beige food when I have struggled to cook or gets a vegan ready meal
• He has helped me get up the stairs and dressed on several occasions
• Has had to accompany me on walks (he’s certainly not renowned for his walking)
• He has now taken responsibility of the finances which having 20 years plus experience as a Quantity Surveyor/Commercial Lead quite hard to let someone else take control, not to mention that Ste’s previous history of managing money has not exactly been a successful one.
• He arranges my prescriptions
• He communicates with friends on my behalf sometimes
• He tells friends to be quiet and not ask questions when he can see I’m struggling.
• When he sees me turning a pale shade of grey tells me to rest. (brings a whole new meaning to Fifty Shades of Grey)
• Sorts out IT and technical issues at home (I think that’s always been the case though not because I couldn’t more because I couldn’t be arsed)
• Despite me being able to write my blogs I do get him to proof read what’s written and he has to upload it along with any pictures I send him on my blog site along with posting on my Facebook account as he doesn’t have one. (My cognitive thinking has been affected and any more than 2/3 steps in a process can be quite difficult for me at the moment).
• Emotional support when I’ve been low sometimes the medication can alter your mood let alone the physical appearance.
• Arranging someone to sit with me when he’s gone to football training and no-one else has been in the house, just in case I have a seizure.
• Telling the kids to turn the TV down or noises as too many are too much.
• Shouting at me when I’ve done ‘too much’

Learning the Hard Way

Over the past few months, it felt like I was making progress but unfortunately just a couple of weeks ago I learned that going hard (doing too much) can lead to also going to hospital and a stay in A&E for which I am subsequently paying for now, weeks later leaving me so dependent that I asked my Occupational Therapist for mobility aids, shower stool hand rails, noise cancelling head phones all which I will go into more detail in the future.  I don’t acclaim to be a profound athlete but for someone who just 12 months ago was boxing training three times a week and going to the gym in the mornings on a regular basis this is the hardest pill of all to swallow.

I do know this is just a temporary blip and that I WILL get better, more independent and hopefully give Ste and those around me some independence/rest in the process. So, for now it’s small steps (literally), relaxing and resting not thinking I can conquer the world as just getting dressed and tying my shoelaces is challenge enough at the moment.

(I know what you’re thinking with I would definitely swipe right for this lady she sounds like a right catch)

What a legend?

By doing all this Ste has shown me the true meaning of what it is to love someone through Sickness and in Health and not just on the one occasion. For that I am eternally grateful and I would return the favour (with the exception of IT support obviously and maybe wiping his arse)

Now before you go nominating Ste for some Hearts of Gold Award I would like to make the following points;

1. He gets to proof read my blogs so maybe he could have edited this whilst I’m blissfully unaware.
2. Despite all of the aforementioned my combination of smouldering looks, great sense of humour and maybe a touch of sarcasm Ste is clearly punching way above his station.
3. He still doesn’t do as many jobs as ‘Super Steve’ across the road as me and my friend like to call him, so clearly needs to crack on and pull his finger out
4. I’m the lucky lady that get to listen to his snoring every night!
5. He still owes me one.

Lessons Learned

1. Going hard and doing too much can set you back. Learn to relax and rest (which I am pleased to say I am doing that this weekend due to the kindness of a friend in one of my Happy Places with family making more happy memories giving Ste a more than deserved ‘rest’ at home).
2. Before you commit the words ‘in sickness and in health’ can you really imagine doing all that and maybe more for your partner.
3. Sometimes carers get neglected so friends and family of carers maybe check in on them every now and then. They’re more likely to tell you the truth about stubborn shits like myself. They’re the ones that might need your support more than ever. Don’t do this though if it’s detrimental to your wellbeing or you know you can’t actually follow through with a commitment.

So, I have been pondering whether to post this for some time. For those of you that have previously read my blogs (thank you) will know that I was diagnosed with Stage 4 Metastatic Melanoma in August 2017.  To cut a long story short (I’m never good at that by the way so advance warning if you’re reading my blogs make sure you have a nice brew in hand) I was put on Immunotherapy almost straight away, which was relatively new in the UK at the time.

This was one of the reasons I decided in hospital to start this blog as it was struggle to find any sort of information on side effects, success rate, life expectancy. My first treatment I was actually shown a Chemotherapy video instead (thankfully things have now progressed). I only ended up having 2 doses of the combination immunotherapy and then was hospitalised for some time due some pretty horrific and life-threatening side effects.

In spite of all this the Immunotherapy continued to work each time I went for a scan there was evidence that my melanoma was shrinking and in September 2019 I was told it had all gone. I was totally amazed no sooner had I started writing about this dreadful journey it seemed like it was going to be over. I truly believe this drug is a wonder drug and along with a moderately health lifestyle, lots of veggies, positive attitude and a bit of faith not to mention amazing oncologist and cancer centre was the successful cocktail.

When Lightning Strikes Twice

Fast forward to August 2021 I was coming up for my 3 years ‘all clear’ N. E.D. (No Evidence of Disease) I had been having regular 6 monthly CT scans when lightning struck twice. It wasn’t in the same location but the same shitty Melanoma this time it’s in the form of Brian Tumours.

See cancer doesn’t discriminate it prays on innocent children, on the elderly on the good people of this world and we can’t let it. It seems more and more people unfortunately know someone who does have or has died from cancer and that needs to stop. To stop this, we need to understand and research the causes of cancer and adapt accordingly. We need to know the warning signs to aid prevention.

In a world where we can’t really agree on many things, maybe we can at least agree that sharing experiences of cancer we can look at a prevention and hopefully one day total cure. See when I started my blog I did it in the hope that if I could just help one person (all right selfishly 2 including me) then the roller coaster would have been worth it.

So far, it’s not been quite the roller coaster of a ride I would have gone on more like the wooden rickety Grand National at Blackpool where you often wonder your fate at the end, come off a bit dishevelled.  But when you do you have a new found appreciation for your knuckles, the floor and the mug of a seagull that just 10 minutes ago nicked your chips.

Cancer Research UK

I was contacted to ask if I would like to do another article for today for Cancer Research UK as the lovely lady had been in touch previously when I was asked to start the Race for Life at my local Park to which I was privileged and honoured to do so. I thought about this for some time and I worried. I worried what my work colleagues would think, would people still think I’m banging on the drum saying woe is me, would people care, would it affect me, how would it affect those around me in particular my husband and children so just last week I declined.

However, the truth is people will always have opinions the world just wouldn’t evolve if it didn’t. Those who generally have negative opinions about all sort of illnesses and diseases are probably the fortunate ones who have ever had to really experience it. The only ones who unfortunately know how I am is me (some days that’s debatable), closely followed by my husband, children and amazing team of Oncologists, Skin care Nurse, Neurologist, Occupational Therapist and Speech Therapist.  Hence why I have decided to share this experience to those who still want to read in the hope that it will do some good in the world and hopefully maybe put a smile on someone’s face.

This time it has affected me in more ways than before, each day is a different kind of struggle but I cherish the ‘good days’ and still grateful for every day I wake up. My physical, mental health, memory has been affected along with my speech and noise sensitivity. But if there is one thing that I won’t let it affect that is my creativity I love writing (my spelling is now more than questionable) and also doing crafts. I feel that this will help me get through this tough time.

Perspective

See it’s all about perspective we can’t always prevent the things that happen to us but we do have a choice in how we let them affect us. If any of you had read my previous blog, I mention that I read Hal Elrod’s ‘Miracle Morning’ blissfully unaware that I had cancer. Four years on I read another sequel the ‘Miracle Equation’ blissfully unaware that I had 3 brain tumours growing. Now if we were to look at these statistics 2 books = 2 cancer diagnosis it doesn’t make for great success. However, if I look at it from a different perspective the 6 principles of Silence, Affirmation, Visualisation, Exercise, Reading, Scribing are probably what gets me through each day.

Having said that though I do have a third book of the ‘Miracle Morning Millionaires’ on the shelf at home which not to tempt fate I won’t be reading anytime soon. Besides everyone knows that the third is usually a flop and to me now just to be healthy is worth more than any money can buy.

‘Nothing is stronger than a small amount of hope that won’t give up’ – Matt Haigh

‘I won’t give up’ – Rachel Cummings

The above quote from Matt Haigh I tended to write of late on my really bad days and it keeps me going not to give up HOPE.

I will try and post more often as long as people are enjoying them as long and

1. I have managed to get out of bed that week or
2. not been hospitalised.

So, for now if you’ve got this far then thank you.

I hope to see you again soon

Rachel x x x

15th May 2019

So today it was time for my next routine scan. This time due to my two previous NED’s (No Evidence of Disease) it was just a CT scan.  I only found that acronym out in the last few weeks so don’t worry if you had to google it as well.

Over the last couple of years I’ve racked up a few scans. I reckon I’ve been scanned more times than a reduced priced turkey at ASDA (other supermarkets are available). I’m hoping one day they might start handing out a ‘you’ve been good at the hospital today’ sticker or ‘I survived anther pointless meeting’ sticker as everyone loves a sticker. It gives us otherwise ‘none’ achievers as sense of purpose and make us feel as though we have been rewarded for our efforts.

Come to think of it I’m not really sure I’ve achieved much in my life in the way of certificates and recommendations. I sometimes do feel inferior to those individuals who complete marathons and ultra-marathons or have been recognised in their field of work by colleagues or the industry. I’m lucky if I’ve received a “thank you” for some of the work I’ve produced. For me I’m still clinging on to the fact I swam 92 lengths at the age of 7 and was awarded swimmer of the year that year. On the day of the event I was doing a sponsored swim. I finally got out of the pool (because it was shutting) totally oblivious to how long I had been swimming for or how many lengths I had done. I looked up at my mum I’m not sure she was as delighted with my efforts as she and my dad and other sponsors happened to have sponsored me by the length and only thought I’d manage 30 lengths and I had just tripled their sponsorship.

Don’t worry I haven’t forgot the sense of achievement of passing my driving test, becoming a mum or of course beating cancer. These are by far up there in the sense of life achievements. I’m just lacking a sticker to remind me or the kids when they are pushing those little ‘mum’ boundaries like they do.

Despite these number of scans and the familiarity of the whole process there are still a whirlwind of emotions before, during and after my scan that never seem to diminish. I’ve tried to keep these emotions to myself and never really mentioned this before now but to be honest I think anyone that knows me knows I’m a complete pain in the backside just before and after my scans.

Scanxiety

It wasn’t until recently that I even realised that scanxiety was actually something that is quite widely recognised amongst cancer patients who suffer from anxiety around the whole scan process and waiting for results and something that unfortunately I can relate to.

Now don’t get me wrong I don’t want to add this as another ailment to my previous medical history but it’s something that I can certainly relate to in some respects.  Hopefully by recognising it now and learning to put certain processes in place I can maybe reduce the effect it has on me and the poor sod that happens to ask me how my day was around the same time.

Also, by sharing my experience maybe it’s something other people can relate to or those around them and help them understand why them might be acting or thinking in a certain way around the time of scans.

The scan cycle

For me when I sit back and I think I can see a whole cycle of small events that seem to occur before, during and after my scan. I generally have a date in my diary for my next scan (if this is a routine one). That date just simply seems to disappear out of my head although I know roughly when it is (this may come of a surprise but I am not an organised person). Round about 1 or 2 days prior to the scan I start to subconsciously think about it. I don’t even know what I am thinking I just know it’s there in the back of my mind and I think something starts to trigger in my mind.

Stage 1 – Acknowledgement – I suddenly remember I have a scan during the month and desperately search for a letter with the appointment date and time. Once I do eventually find it it’s there in my head.

Stage 2 – The scan date is one or two days away. I start to feel the emotions of ‘have I done enough’. For example have I done enough with my diet, exercise, general wellbeing to make sure that this scan is clear? I start to then go into a bit of a panic mode and try to cram everything in at once.

A prime example of Stage 2 is when I had read about the gut and the boosting effects of immunotherapy with foods such as sauerkraut, cruciferous vegetables such as cabbage and kimchi. (Please don’t take my opinion as gospel have a look and do your own research) also please don’t judge me but on this occasion my discovery was extremely close to my next CT scan. On the day of the scan I went full hog, I devoured a whole plate of cabbage and three vegan sausages (I said don’t judge me).

My dad came to pick me up and I remember thinking, I am so full. I clearly hadn’t planned this properly I was so full and believe it or not I must have gone into ‘stage fright mode’ as I couldn’t even pass wind or burp to make some more room in my stomach. I thought nothing of it until a few weeks later when my oncologist said the results were really good but there were some signs of XXXX. I didn’t know what XXXX meant but when I asked she said basically they said your stomach was really full! I was mortified how embarrassing. I had visions of them looking at a heap of cabbage a three sausages poking about. Have I learned my lesson….nope.

Stage 3 – The scan day. For me this is the day when I am probably at peak on the annoyance scale. I can’t really describe it but words such as ‘you’ll be fine’ or ‘don’t worry’ seem to send me into crazy mode and where the words ‘fine’ are not ‘fine’. Most men will have been subject to the term ‘it’s fine’ by their significant others often used in certain scenarios such as;

Male “I’m sorry I missed our anniversary love but it’s the FA cup and I’ve promised I’ll go out with the lads. You don’t mind do you?”

Significant other “It’s fine”

Real translation: if you think you’re coming home two sheets to the wind annoying me on our anniversary then I will shove your balls/hand so far up your arse you will have forgot you ever had them.

Thankfully so far Ste hasn’t had to pull his balls out from his arse just yet but I do recognise that I am a little bit moody to say the least and my advice for those in my company it’s better not to speak to me and just offer me tea and smiles (I just hope they read this before my next scan)

Stage 4 – The actual scan. For me strangely enough this is the bit where I am pretty calm. Having had a couple of scans I’m all too familiar with the experience and how, relatively pain free it is. There have been only a couple of occasions where this has been an exception to the rule;

1. The time prior to my diagnosis where I had an MRI scan and the x-ray team had forgotten to play any music. The screeching was so horrific that I thought it felt like the white noise from SAS interrogation methods or the latest hardcore Radiohead album (you decide).

2. The time when things had taken a turn for the worse and I was told to have a scan on my chest to check if there were any issues with my lungs. At this point sitting up was a chore and my temperature spikes were so bad that I was shivering all the way to the scan. My rash was so sore that chest plates they put on the scan felt like heavy metal weights. I was terrified. Especially when it was prior to visiting time and there was no other familiar face around. Thankfully going to the scan seemed to help lowering my temperature so I actually felt better for a while afterwards. See every negative has something we can gain from it.

During the scan I tend to chant things in my mind like “I am cancer free, the treatment is continuing to work and there are no cancerous cells in my body”.  I don’t go on full tribal ritual and start wearing face paint as I’m not sure the hospital staff would agree to that but I have my own little quirks and these are what calms my nerves.

Stage 5 – All done relatively pain free maybe a bit of a mark from a canular. You’re told to drink lots of water on the day. After that I usually go home but to be honest, I just feel mentally drained so go and have a ‘nanna nap’ as I like to call it.

Stage 6 – This is the period in between my scan and my follow up results from the Oncologist.

This anticipation phase is where I worry the most. I constantly worry whether I will get a phone call or fret that “is no news good news?”. Various thoughts go around in your head and if I let it, the months of waiting for your results can put you on hold. Constant thoughts like well if this happens what should I do, etc.

All I can say from the above is that these are the roller coaster of emotions that often go through my mind regarding scans. I’m not sure if they relate to any other individuals however what I’m starting to do is:

1. Acknowledge these feelings and accept that this is part of dealing with life after cancer

2. Try to let others be aware of my feelings so that when I bite their head off or cry for no apparent reason, they know there is possibly something else going on.

3. Try to think positively put the mechanisms in place to calm myself and make sure my little rituals are done.

4. Learn not to let it affect me so much that I stop ‘living’ my life in anticipation of something that may or may not happen.

The fear bubble

A few months ago, I was watching an evening with Ant Middleton the former SBS solider from Channel 4’s SAS Who Dares Wins. There was one thing in particular that he talked about in detail that seemed to imprint on my mind. He mentioned an imaginary fear bubble and that whatever problem or issue you are about to face only enter the fear bubble when you need to.

The way he described this just made total sense and can totally be applied to all elements of life including Scanxiety or the fear of scans and test results. There is absolutely no point in procrastinating in what may or may not happen as it’s just wasted energy. All that energy can be put into other elements of your life. Like enjoying it and achieving what you thought you couldn’t. Only enter the fear bubble at the moment you totally have to. Only then do you need to face your fears and come to terms with what you may or may not have to deal with. Spend your energy focusing on making sure you are mentally and physically equipped to deal with anything.

I can’t say I’m not jumping in that fear bubble at the right moment just yet but it’s something that I am trying to improve on as well as my confidence and being the best version of me that I can.

Mid November 2017

It was mid-November and I had been in hospital for over three weeks now. I was definitely getting better by the day as I couldn’t wait for visitors to come then I could go and get some exercise, freedom or a bit of fresh air at the entrance of the hospital next to those patients smoking a fag! My medicine had changed and the swelling and the rash had started to die down. I was on some strong steroids along with a cocktail of other stuff which I can’t really remember but it seemed to being doing the trick. I was told I would be monitored for another week just to make sure I was on the right medication. I was gutted in a way but at least I knew I was in the right place if things went a bit Pete Tong again.

I was asked if I would move back into the bays as there was an extremely poor gentleman who needed it who had just been admitted. Despite all my luxuries and home comforts I jumped at the chance I couldn’t wait for a bit of company in all honesty.  This time I was allocated one of the beds in the first bay which was great it meant you generally got your medication first and with the added bonus of being fed first.

This time on the bay there were about 3-4 ladies. All somewhat older than me but company nevertheless. One was over 90 and extremely terrified, one was late 70’s and deaf as a post and one was around 50 or 60. The others weren’t there that long so I can’t really remember them. On face value we probably had very little in common but I made it my purpose as the ‘fit one’ in the group to chat to everyone, find some common ground and help out as much as I could. The lady across from me was lovely unfortunately however she had just had her leg amputated and had been diagnosed with bowel cancer. She was clearly in pain a lot of the time and it upset me to see so I tried to help her as much as I could to make her comfy.

It was in hospital and whilst being ill that made me realise how having a purpose is so important in everything we do. My main purpose in hospital was to get better and basically survive. For instance, I didn’t want to be on a drip anymore so I decided to drink as much water as I could to avoid this. One of the nurses was really helpful with this and I would go through bottles and bottles of the stuff. I don’t think they realised how much I had until they had to record it going out. I was like a fish and I think I could have survived a spout (excuse the pun) of waterboarding had I been put under enough pressure. See once I set my mind to do something I was determined or as my husband and parents might like to call it a stubborn little so and so.

Being in hospital meant I was sort of shut out from the outside world and it was my prerogative to be selfish for once. The outside pressures we normally deal with on a day to day basis just weren’t there. I didn’t have to worry about bills, sorting the kids out, work, cleaning, making dinners. In some respects it was a lot easier as a patient (aIthough I  wouldn’t advise to go to these extreme measures to text this theory). In hospital if I wanted to exercise, I did, If I wanted to relax, I would sit and colour, meditate or write. I even built a Lego caravan complete with car to tow it (I always wanted a campervan or caravan so Ste bought me one, not quite what I had in mind but the thought was definitely there). All these things gave me purpose to my day and kept me focused enough to see the main prize of getting out and home.

Now that I was getting better, I found that I wanted to help people. It gave me a purpose and certainly felt rewarding. In a way I can understand why health care assistants, nurses, doctors and surgeons choose the profession they do. It’s certainly not the best paid job in the world nor is it the most glamourous but the feeling of knowing your helping another human being just feels so rewarding. I bet even if only 1 in 50 patients ever actually truly acknowledges their appreciation of these every day heroes all the crap (literally) that they deal with on a day to day basis would feel worth while knowing they made a difference in someone’s life. Now I only got to do a snippet of how this might feel to help someone. Of late I was more on the receiving end of these acts of kindness. My offers of help were going to talk to the old lady who was next to me when I first went in, or switching on a fan to cool someone down and opening a window for those who couldn’t get to it. It did feel good though to feel like you were doing something useful however small it was.

One of the most rewarding moments in hospital was when I redesigned some of the cardboard urine collection bowls for the lady and my new friend in the bed across. Since having her leg amputated, she was often bed bound to go to the toilet and told me she had really painful bed sores in areas which were pretty uncomfortable. It was awful to see, she was such a lovely lady that I couldn’t understand why she should even be experiencing this sort of thing but that’s cancer, it doesn’t care who it affects. I wanted to help her and I had a Blue Peter moment when I spotted some massive sanitary pads in one of the cupboards. I got some scissors and some medical tape and I got to work. Thirty mins or so later and ta dah…. the all new padded urine collection bowl Mark 1. It was the Dyson of the cardboard urine sample world. Turned upside down it probably did resemble Tracy Island in some way so worthy of a Blue Peter badge in my opinion. I showed my friend and she was delighted, she loved them so much we made quite a few. Unfortunately, the production line wasn’t as consistent as I would have liked and some may have only just scraped through the quality check but they served their purpose and I know they made a difference to my friend and that felt good to me.

 I often thought and daydreamed of a career change in the NHS once I got out of hospital but there were a number of obstacles that I would have to get over first for this to be a reality;

1. My phobia of people’s germs and potentially sharing bodily fluids with anyone (by that I mean drinks, food and salvia!)
2. I faint at the sight of blood
3. I don’t do sick
4. I literally don’t know my arse from my elbow.

So, as you can tell from the above points a career change in the medical industry was most likely out of the question, however I started to think I did have a purpose. I hadn’t gone through all of this for nothing, I needed to turn something negative into a positive.  What was going to happen in the future I didn’t have much certainty on at that time. What I did know is that if I could make sure people were aware of some of the symptoms I had, then I could reduce or minimize the likelihood of it happening again. That’s when I really committed to writing a blog and wanting to raise awareness and hopefully some money for charity in the process.

See we all have a purpose in life, we might have more than one.  Sometimes our purpose is so small it may seem on face value irrelevant but the smallest gestures can sometime have the greatest impact on people. Some people go through the majority of their life wanting to find their ‘purpose’ or ‘true calling’ we often do this in our search for a career. I think it’s great to have dreams but if there’s one thing I’ve learned is not to waste your whole life trying to find your ‘true’ purpose in life. 

In doing so you might overlook those small little moments where you were needed as a mother, a friend, a kind stranger, a cleaner, a chef, a delivery driver. Those moments where you’re input could have just had a life changing impact on someone else’s life however insignificant it may have seemed at the time. Now at the age of 39 I still don’t know my ‘purpose’ or ‘true calling’ in life but what I do know is that I’ll keep finding ways to make myself useful and find a purpose to each day. Who knows by doing so one day I might just stumble upon my ‘true calling’?