Dance to your own tune

Quote of the day:

  1. Dance like no one is watching, love like you’ve never been hurt; sing like no one is listening, and live like it’s heaven on earth
  2. Why fit in when you were born to stand out

The Hourglass

Since being diagnosed with cancer back in 2017 I’ve learned to appreciate each day more. Don’t get me wrong there are days maybe weeks where I can definitely say I haven’t made the most of my time or appreciated those around me. It’s safe to say if one of those days were to have been my last then looking back I’d be pretty gutted if that’s how I’d spent my last day on earth. Generally, on the whole though I think that I have an enhanced gratitude for the simple things in life for instance the birds singing in the morning, the sun rise, plants and trees, hearing my kids laugh (even when it’s at my expense).

Most of us have to work therefore making time to appreciate the simple things in life as well as be a good mum/dad, having a tidy house, being a good human being, walking the dog, staying healthy, exercising (the list goes on) seem like an impossible task. It’s a lot about trying to find a balance with earning enough money to live the life style we desire and having time to appreciate the simple things in life that money can’t buy. Now if someone has mastered this dark art then please can they let me know the secret as I’ve often made the wrong decisions. It’s only when someone tells you that sand timer is running out that you start to focus on what really matters to you. For me at this moment I’m concentrating on my health and getting better.

The point I’m trying to make is if you don’t want to do something then don’t do it (unless either of my kids and husband are reading this then you need to do whatever it is I am asking NOW). Don’t waste your time going to baby showers you don’t really want to be at (is that just me that really doesn’t get the idea of a baby shower sorry!), don’t sit through shows you’re not enjoying or go to some house party you don’t want to be at but your just there because you’re being ‘polite’. Learn to say ‘No’ to things (well not everything or you might end up pretty lonely, friendships are all about compromise). However, in the end it’s your time and you need to spend it wisely, don’t worry about upsetting people. Spend it on doing the things you love and make you happy, don’t worry about what people think it’s not their life to waste. If they don’t like it then unfortunately, they’re probably not your kind of people. The ones you love and make you happy are most likely the friends and family you want waste grains of sand on.

Dance Like No One is Watching

One of my close friends has MS (Multiple Scleroses) and only recently I discovered that some of the symptoms of MS can often be similar to those of someone who has a brain injury/brain tumour. Both illnesses mean you have very limited energy and once that energy has gone then unfortunately you’re not fit for much (this I have learned the hard way several times). My OT (Occupational Therapist) said it’s like you have 5 spoons of energy a day so you need to prioritise what you would like to spend those spoons of energy on. For example, if I was to have a friend over to visit I can manage about 1 hour before I’m really struggling talking or listening so that’s 1 maybe 2 spoons. Going for a short walk that’s another spoon and making lunch that’s another spoon. You can see how quickly your spoons get used up. That’s why I often have to go for a sleep or even to just lie down in silence as my brain needs a rest. It’s really hard to try only do a few things when I’ve always been a doer and find it really hard to just not do anything. This is when I take the opportunity to do my crafts or read and write.

My friend has been living with MS for a while now and I have to admire her zest for life. She doesn’t let it stop her at all. She will be the first and the last one on the dance floor enjoying herself and that’s just at kids’ parties. She doesn’t really care what other people think and I’m sure she uses her spoons more wisely than me.

Born Worrier

For me from a very young age I used to care what people think. I would never go and dance at parties or in holiday clubs (the only exception would be musical bumps and because there was generally a prize up for grabs and it just involved falling on your arse). Later on, I progressed to the classic side step and clap at school discos. After that in my late teens you would generally find me at the bar getting drunk with the lads (no wonder I often get called ‘mate’, I find it quite endearing though!). If there was ever a situation that involved dancing I would feel the knots in my stomach build up and panic would set it I would either; a) go to the toilet to waste some time b) go to the bar to get another drink.

On my wedding day the actual wedding dance I look back on and cringe it was one of the most uncomfortable moments of my life and I will explain why;

  1. The DJ called us to the dance floor and announced to the guests that we were to take our first dance as man and wife. We had not discussed this with him and had I have known I would have definitely told him not to bother.
  2. There we were forced in the middle of the dance floor centre of attention (which for me is my worst nightmare). We had not rehearsed this at all like the videos you see of couples who have this fantastic first dance then all the ushers and bridesmaids join in, nor had we taken the opportunity to take up salsa dancing classes in preparation. For one my thighs should not be on display (although I am still partial to a pair of American tan tights!) and also Ste’s garish shirts and boot cut jeans days are thankfully behind him.
  3. The only slight preparation for the dance was that we said to the kids when the music comes on would they join us. Our thoughts behind this was that it would be cute for us to dance as a family and also they would act like a small human shield to hide the fact we are both rubbish dancers (Ste will argue this point but in my defence in the whole 17 years I have known him I have yet to see him dance – Ste I do not call the dropping arms and pointing to the floor a dance move). The kids agreed to this so we felt this box was ticked.
  4. For some reason we decided to choose Ed Sheeran’s ’Thinking Out Loud’ song as the first dance, not because we really liked the song but it was the only one that hadn’t been played at the ceremony that we still remotely liked and therefore thought well have that. Being there are quite a few gingers on both my mum and dad’s side this was also a great tribute to them. However, to this day neither of us associate this song with our wedding day. Should we have had the balls to not conform i.e.  have a song played twice at the wedding!! then we would have picked Christina Perri ‘A Thousand Years’. This is the one I walked down to the wooden gazebo with my dad (not aisle that’s certainly not me)
  5. Ste moved in circles and at the same time managed to stand on my dress. I was politely trying to tell him to ‘get off’ my dress and at the same time smile while there was 100 people stood by taking pictures. The exact moment I wanted the ground to swallow me whole.
  6. The kids refused point blank to come and join us on the dance floor they were far too busy getting high off all the E numbers from the sweet jars, Daisy had managed to rip her flower girls dress and Archie had took most of his cute little suit off and was wearing glow stick bunny ears whilst drawing on the HIRED giant Jenga pieces with black marker pens.

It’s fair to say I do not like being the centre of attention nor does Ste (I think). I tried to give eye contact to the DJ i.e. gave him the death stare a couple of times until he finally twigged and asked people to join us on the dance floor – (thank god for that). Straight away Ste went to the bar ‘to entertain’ and I think I might have stayed for one song (I have photographic evidence to prove this)

The truth is I totally wish I could be more like my friend and other people I know and dance like no-ones watching. When the kids were young, I used to make a big effort and get them to join in with things on holiday and parties even if it meant joining in much to my discomfort. See I don’t want them to grow up being ashamed to enjoy their selves for fear of other people’s opinions.

On hindsight if we felt that uncomfortable about ‘conforming to the norm’ we should have just said ‘No’ and done what we wanted. After all it was our wedding day. I and I think Ste would have felt much more comfortable dancing while everyone else was. Meaning we could hide within the crowd and fully enjoy the moment with the man I was going to spend the rest of my life with.

Lessons Learned  

  1. Choose what and whom to waste your grains of sand on.
  2. Don’t ever do something just to conform.
  3. Don’t care what people think or what they will say it’s more than likely they’re too busy looking at social media at someone else’s ‘perfect life’ to notice what’s going on in the real world.
  4. A picture can say a thousand words but it can also hide a few swear words.
  5. Don’t trust kids they are cute little arseholes that lie just to appease you.
  6. Don’t hire Jenga pieces at a wedding if kids are involved.

Fifty Shades of SRS Radiotherapy

Quote of the day:

  • Nothing in life is to be feared it is only to be understood. Now is the time to understand more, so that we fear less – Marie Curie
  • I hope you know how brave you’ve been – Charlie Mackery

November 2021

It was early November 2021. I had returned home from hospital and was slowly recovering from the surgery in that my head wound was healing. The MRI scan showed that the operation had been successful and the Neurosurgeon had done the amazing job of completely removing all of the tumour. It was confirmed that the tumour was Melanoma. This was always suspected but never confirmed until the actual tumour was removed. There is the chance that now the Melanoma has Metasized (spread to other areas of the body, for the second time) it can return in the body, neck  and previous areas. For now, though thankfully my CT neck and body scans have been clear and there is no point focusing on what may or may not happen. I need to save my energy on the present and what is known now. Now there was the not so simple task of dealing with the two smaller brain tumours that couldn’t be operated on.

Thankfully I was offered the chance of SRS radiotherapy (Stereotactic Radiosurgery). This is a non-surgical radiation therapy used to treat functional abnormalities and small tumours of the brain. It is more precise and requires fewer high dose treatments than traditional radiotherapy. Amazingly and luckily for me it just so happens Preston Hospital have one of these machines.

The plan was to have up to 3 doses. I had to wait until my head wound had healed and being the Neurosurgeon did another amazing job of cutting and shaving a minimal area you could hardly tell I had, had brain surgery. Before I was discharged from hospital, I had asked the nurses to remove the staples as didn’t fancy a return visit or a visit to my local treatment room. To this day I don’t really know what my wound looked like or how many staples there were until it had healed because a) my hair was totally matted and b) you try looking at the side of your head when you can’t move your neck it’s not that easy. (It’s a bit like one of those tasks where you get kids to try and lick their elbows just for 10 minutes peace, if you haven’t yet done that you can thank me later). All I do know is that the removal of the staples was a two-person job combined with a lot of heavy breathing and clinking. When I could finally wash and dry my hair albeit sat over the bath with Ste acting as a very shit and rough hairdresser. I could quite easily hide my scar (I knew my frizzy hair would eventually come in handy one day, it’s only took 41 years but it finally came up trumps in the end).

SRS treatment to the head and neck requires wearing a specially fitted thermoplastic mask. I had to go for an appointment to get this made as it needs to be to the mould and shape of your face so there is no movement. This is totally pain free in fact it’s warm and feels a bit like having a facial although it’s a long time since I’ve had one of those. If I had to explain what the SRS mask looks like the nearest thing, I can think of is the green Joseph and Joseph sieve we have at home with small holes in. You know the type of thing you purchase because you think you’re being posh and this utensil will make a huge difference to your culinary abilities. Then a few months later you realise it was definitely an impulse buy and has made no difference to your culinary abilities, added to the fact you can’t actually afford any of the matching items so it sits there looking slightly out of place amongst your range of basic cooking utensils you’ve acquired over the years.

Just breathe

It was the SRS appointment day Ste drove me to the hospital and we had to sit and wait for a while. When we did get seen I was told I was going to have just 2 intense 20-minute sessions but it would all be done in that day and would that be ok. It meant I wouldn’t have to come back for another session so I agreed to it.

I went into the room which did feel cold. I was told that they needed to scan my brain to make sure they get the exact location and I had to remain completely still. This bit is the long part along with the fitting of the mask. The actual SRS radiotherapy beam is the 20 minutes.

The radiographer got the mask she said it would be particularly tight but would warm up. It was clamped in place so that you couldn’t move your head at all which I suppose you can understand as it needs to be so precise. I was expecting it to feel tight but I wasn’t expecting what was about to come next. The radiographer who was talking to me all this time clamped the mask in place. It felt awful you literally couldn’t move your jaw to even speak. There were several adjustments and I have to say not one felt comfortable. To add to the irony of situation I swear Will Youngs ‘Jealousy’ song was playing in the room which has some lyrics about not being able to breathe much to my annoyance (more because it’s a pretty crap song especially in that situation – sorry Wil I did vote for you in pop idol though so I’ve only myself to blame).

After several attempts it didn’t seem any more comfortable. I do like to think I have a pretty high pain threshold after all the crap I have been through over the past few years however on this occasion I’m not ashamed to admit it I was struggling. I think what added to the pain and discomfort was that I had a particularly sore neck strain from the brain surgery.

It came to a point where the radiographer just said we’ll just have to go ahead and if you need to stop just say and we can. So, the mask was fully clamped in place and the radiographers went out of the room. They then scanned my head to pin point the exact place the radiotherapy was to be targeted. I don’t know how long this took but it did feel like a long time.

Next was the SRS radiotherapy beam. The radiographer said just say if you need to stop but it was to be 20 minutes and then if I felt ok, I could have the next session straight after. I lay there and to be honest the actual beam is totally pain free. For me it was the mask for me that was really uncomfortable and hurt.

Fifty Shades of SRS Therapy

I lay there and tried to do what I do in most stressful situations close my eyes and meditate. I managed to get through the first session and the radiographer ask me if I wanted to carry straight on. The answer to this was a definite ‘NO’ well it would have been if I could have actually moved my jaw to speak that’s how tight the mask was. I can’t say I’ve ever worn one (honestly!) but I can imagine it being some what similar to wearing a gimp mask and being unable to say the ‘safe word’.

I must have moved my hand or something as the radiographer came in took the mask off so I could have a break. I got a bit overwhelmed and upset at this point. To be honest I felt like I was being a bit soft and not sure I could go through it again, so I asked if I could go to the toilet. I walked past Ste who was quite happily sat there scrolling on his phone oblivious to all of this. On a scale of 1 to 10 I think his emotional sensitivity level is probably -10 on a good day but to be honest I think this has proved quite beneficial in my case.

I went to the toilet a looked in the mirror my nose was red and sore and I had a spot on my chin that was now a nice red square. I sat on the toilet and was glad of the break. I think at this point I thought to myself I need to get a grip so I literally pulled my big girl knickers on (apple catchers) and walked back to the room ready for round two.

I’m not sure if it was a combination whether the radiographer may have fitted the mask slightly different or I composed myself better, or the mask had warmed up but the second session felt miles better I could actually breathe and move my lips slightly. At the end of the session was glad it was complete. It was then I was led on the table and moved my head to the left. At that point I noticed all the masks there. There must have been maybe 30 at a guess. I thought to myself each one of them is a person who has to have SRS radiotherapy. If they can all go through that then I should be able to go through it. In fact, some people would jump at the opportunity to have this treatment so to go through any pain and discomfort for a couple for hours is nothing in comparison to what others go through and I would do it again if I need to.

Lessons Learned

  1. Posh utensils and kitchen gadgets aren’t always a good buy especially if you can’t afford the rest of it.
  2. When things become overwhelming sometimes you just need to pull up your big girl knickers
  3. Should the opportunity arise I don’t think I’d be cut out for S&M

Finding your Happy Place

Quote of the day:

Quote 1 ‘God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference’ – Reinhold Niebuhr

Quote 2 ‘Find your happy place and go there in challenging times’ – Rachel Cummings

Two steps forward two steps back

Do you ever feel like no matter what you do you’re on this conveyor belt and don’t seem to be making any progress at all? For me recently it feels like that for every two steps forwards I have been making I end up taking two steps back.

Why is it at this point I have the lyrics to ‘Opposites Attract’ sung by Paula Abdul and MC Skat Kat currently going through my mind!  (Yes, I did have to google the cats name). The cartoon cat who bizarrely at the age of 9 I had some strange affection to. Although on reflection I think he was nothing in comparison to Jessica Rabbit in Who Framed Roger Rabbit. She was pretty hot.

For every bit of progress, I was making, it felt like it would shortly be followed by a set back whether that be in terms of mobility, seizures, medication or even a stay in hospital. However, I think of late what has affected me the most is that those I love and care about seem to be going through pretty challenging times themselves and that’s before I even look what’s going on with the rest of the world outside of my own little bubble.

Now I think there is some saying that if we threw all the world’s problems up in the air and you had to catch one you would be grateful if you caught your own. I definitely agree with this theory in that there is always someone worse off than you. That’s not to say the difficulties you are currently going through are insignificant it’s just to try and think of it from a different perspective.

Now don’t get me wrong if someone threw my current ‘set backs’ up in the air I’m pretty sure most people would try to avoid them like shit in a storm. However, there are certainly people far worse off than me, I am still here and for that I am grateful and will continue to fight and deal with each day as it comes. When we come across bad news it feels like everything, we hear is bad news and it’s hard to look for the positives. However, the positives are still there we just have to dig a little deeper and change our perspective. As harsh as it sounds there are only certain things we can change or have an impact on.

‘If you don’t like something, change it. It you can’t change it; change the way you think about it.’ Mary Engelbreit

Happy Place, Happy Place

A way I try to change my perspective when things aren’t going to plan or in difficult times is going to my happy places (at this point Ste may be phoning the mental ward if he’s not on speed dial to them already). Now for those of you that have watched ‘I’m a Celebrity Get Me Out of Here’ you’re probably thinking right now of Jordan North. Those of you that haven’t to give you an insight he’s a Radio 1 DJ originally from Burnley whom when given tasks from Ant and Dec (the presenters that come hand in hand a bit like Bert and Ernie, the Chuckle brothers, Morecambe and Wise, Little and Large whom are all rarely seen without the other). Ant and Dec would set the celebreties with various different challenges such as to sit with a load of snakes in a pit, eat some hairy kangaroo balls or fermented fish eyes. Jordans way of trying to cope with the ‘situation at hand’ would be to chant ‘Happy Place, Happy Place, Turf Moor’. He did this as a coping mechanism and to deal with whatever task put in front of him.

A visit to Turf Moor

It’s this similar principal that I use when I’m having particular ‘challenging’ days. Now being that Blackburn and Burnley have been football rivals for years I couldn’t think of anywhere worse as my Happy Place than Turf Moor. However, having said that Archie was lucky enough to be Spurs mascot in Feb 2019 at Turf Moor when they played Burnley in the league. I honestly have to say the ‘Dingles’ sorry Burnley fans and staff couldn’t have been more generous and accommodating. The day didn’t exactly start stress free in that we had ordered a Spurs shirt in the hope Archie could get it signed by the players. The only place that we could get it delivered in time was from Very (other probably more reliable catalogue stores are available). The night before the game I went to collect the ‘shirt’ from one of the collection stores in town. I remember thinking this feels heavy. When I got home, we opened the package only to find a black leather jacket. I mean how on earth do you get a black leather jacket and a Tottenham shirt mixed up in the first place? I can imagine the look on Harry Kane’s face if we got Archie to turn up and say ‘hiya lads fancy signing this for me you might need a red pen though?!’

I asked around but not many northerners support Spurs as you an imagine…they support Blackburn or most kids now support whoever happens to be winning in the league at the time. Disappointingly nothing came into fruition. This left us with bringing a programme from a previous game to get signed. We did try to go to some sports shops in Burnley in the morning but we would have had more chance of finding unicorn poo and a Blackburn shirt (probably in the same aisle).

When we got there, we were seated in the club lounge which I can only describe as some mix up between Phoenix Nights minus Brian Potter with the offering of tea, coffee, bacon and sausage butties which Archie, Daisy and Ste gladly took up. There was a bit of a prize draw in which I bit my lip at the Blackburn jokes. However cowardly as it may seem I certainly didn’t declare my allegiance to their No. 1 rivals.

Anyway, we had a great day out despite Spurs getting beat. Archie managed to meet some of his heroes and although didn’t get a signed shirt or leather jacket, he got his programme signed and something I hope he can cherish with fond memories and realise how lucky he was for the opportunity.

My Happy Places

Now I’ll let you into some of my happy places (not all mind as despite being pretty open and honest about most things there are some things, I like to keep to myself). In no particular order;

  • North Wales – in particular Pwllheli, Abersoch, Llandbedrog, Nefyn
  • Entwistle Reservoir
  • Jack Keys lodge
  • Darwen Tower (not in it’s current ‘insulated rocket state though)
  • The view of Darwen Tower from a particular spot in my garden
  • My writing and journaling desk surrounded by my thoughtful gifts and presents.

Each one of these ‘Happy Places’ are so for various different reasons. For instance, North Wales is where generations of family have been going for years. Before it was ‘proper posh’ and has since featured in Cheshire Life magazine I believe. For me what makes it so special is the happy memories of sandy packed lunches, big games of bowls and cricket at the Warren Beach down by the rocks with family, camping in my mum and dads orange Dandy trailer tent, playing football for hours on the farmers field with my cousin. Walking down to the pub and sitting outside sharing chicken in a basket with my sister. It’s a place where even now younger generations of our ever-extending family seem to migrate for their holidays. It’s great that as a family of four we’re still discovering new places for the first time that hopefully Daisy and Archie will take their kids to visit.

Entwistle Reservoir is where I would often walk round and chat with close friends and not so long ago my mum whom I was so proud of. This at the moment is an aspiration for both of us but I will get round it soon and I will also drag my mum round with me when she’s on the mend.

The point is you don’t have to actually go anywhere to tune into your happy place. You just have to think of those places and how they make you feel. See if you can’t change what’s happening to you or those around you there is no point wasting your efforts worrying about it. By that I don’t mean that you don’t care what I do mean is concentrate in ways you can be more positive and maybe that’s how you can help those you care about as well as yourself in the process.

On reflection despite my opinion of 2 steps forward and 2 steps back deep down I know that I am my own worse critic and if I put on my positive pants (which today I pleased to say they are on). I have come so far in such a short space of time. I just need to learn to accept there are going to be shit days and that when there are I need to go to my Happy Places.

Lessons Learnt

  1. Don’t purchase a Tottenham shirt from Very
  2. Life’s is all about perspective for instance what is seen as a challenge in some countries can be seen as a delicacy in others. However, I’m not about to attempt to try a hairy kangaroo ball any time soon.
  3. There are some things in life we unfortunately can’t change so we just need to learn to accept and concentrate our efforts on the things we can.
  4. Happiness is not always a destination it’s a state of mind.
  5. Sometimes what are perceived as your ‘rivals’ can in fact be the total opposite.

Finding your Tribe(s) and Community

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’

Brain Tumours – How I’ve Changed

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 lossnow 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 10th 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.

Learning from Our Mistakes

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

MISS IN-DEPENDENT

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).

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.