For any donations…
My story continuing at:
Copyright © 2017 by Jo Barlow
18th December 2016
“So for today's little rambling of the darkest days of the year...
Last night I was watching Dave play ... they were playing Freebird at the time... And suddenly I was sitting there (alone) singing along from what suddenly felt like the core of me and the emotions from the past year came up and I just continued singing the rest with tears of every emotion running down my face...
1st January 2017.
“So it has taken me this long to put pen to paper again.
I’m not sure if it’s laziness or fear of crying a river if I truly feel the magnitude of emotions I have now and have felt over the past few months.
But I think I have had to shut part of me away, for I wasn’t ready to cope with it.
Only today, 7 ½ months after my operation have I dared look online at where the muscles, nerves and skull actually are in your head. I wasn’t able to look and deal with it before. And now I know – there is basically one big nerve running up the back on each side of your head. And mines been cut…
8th January 2017.
“Not sure exactly what I want to write, but I just feel SO emotional. Like I could cry a river from all the emotions I feel right now, over the past year.
I don’t think its sadness – just enormous gratitude, relief, letting go of the fear, exhaustion (physical and mental), love, tinged with a bit of frustration as to why the world can be so evil and why others can’t see this way…
9th April 2017.
I am digging in the garden, slowly moving the soil with a trowel from the once sloped bank into a levelled flowerbed, and while I am digging I keep seeing a robin who seems to be waiting for me to throw him some worms. But this robin doesn’t look like a normal robin, he has barely any redness on his chest and his head just looks like he is missing feathers or is covered in scabs or white patches… he either has some disease or had a very close encounter with a cat? In fact if he didn’t act like a robin I wouldn’t really be sure he was one. However, whatever the reason is for his scars ‘scabby robin’ is just continuing to do what he has to -
21st August 2017
Just woken after a very busy weekend of synchronicity ...
On Saturday Dave asked me to put something back in the car that was parked outside the pub he was playing at ...and walking past my car with her son was Elaine -
26th September 2017 11.11pm
“Today I had 2 notifications on Facebook that I looked at one after the other. The first said "I fucking hate brain tumours and everything associated with them." The second post was a quote from Sargent Johnny Joey Jones with a picture clearly showing him with artificial legs from above the knees, saying:
"People ask how I stay so positive after losing my legs… I simply ask how they stay so negative with theirs."
8th October 2017
I’m sitting here and I don’t know what to write, but I feel sad. I feel there is nothing I can write that is positive… maybe I don’t need to be positive? Maybe I should just embrace the fact it’s OK to feel crap, hating the cold weather, the lack of sun, the dark evenings? Just accept the tears, that the leaves are falling off the trees, that things are falling apart?
17th October 2017
I have an ‘art shed’ at the end of our garden. It was bought with the money I was going to use on continuing the second year of a part time art diploma. But instead we decided to make a permanent place to use for art instead.
It then got cold and damp and needed insulating and I did so, but struggled to spend the money on ‘me’ to fix it. It was all a ‘waste of time’. Plus I find one small problem with art-
20th November 2017
It’s lyrics again. I love the lyrics in songs probably more than I love the music. Well maybe except for when you can feel the passion of someone playing amazingly and the instrument is speaking without words instead.
Yet again it was ‘Free bird’ that got me, but this time it wasn’t the instrumental part, it was the words “I can’t change” and “…this bird you cannot change”…
30th November 2017
I haven’t liked Christmas since I was a kid, when you grow up and realise that your life doesn’t get better from any gift no matter how amazing or expensive, as it doesn’t change anything else and how others treat you the other 364 days of the year or how you feel inside.
Then you have kids and sort of get sucked into it-
10th December 2017
I have always liked my own space, especially outside in nature, but since being ill there has been nothing better than walking outside and there being no one else around. Today’s dog walk was in the sleety rain and I was the only person at the park (I much prefer it when it’s too sunny for most people and I am alone-
18th December 2017
Today was the first time in years, ages before feeling unbalanced or having brain surgery, where I had to sign for a purchase where the signature on my card needed to match. (The card machine hadn’t worked properly so I couldn’t enter my pin number)
The cashier looked at me and said the signatures look different and so took my card and just completed signature to her supervisor to check.
19th December 2017
I read this today on a friend’s Facebook wall …
“You never really recover from depression.
Or maybe I should say you recover, yes, but you never really forget it. How could you? It's like being out on 'day release' knowing you're being executed later that evening when everyone else goes home for supper…”
20th December 2017
Right that’s it. I am going to start drinking alcohol again. I know I haven’t drunk for 25 years, but I am fed up for being the only one sober all the time. I miss the feeling of being slightly out of it, something taking me out of my body and having control over me. I have stopped feeling confident about myself, so I feel I need to drink to be socially accepted.
I need to take loads of egotistical selfies to prove my happiness and worth to myself. I want to gather with friends to drink, so I can forget about how insane and unpleasant my life is. Just feeling a little pissed…
21st December 2017
I love winter solstice – I have internally celebrated the shortest day of the year long before I knew anything more. These horrid depressing cold dark afternoons as well as evenings are now at their worst, and today is the day where it starts getting brighter again. The light after the darkness-
26th December 2017
Saying you are not going to do anything for Christmas feels a little like I imagine it would be if you had just announced you had given up your well paid and respected job, have bought a camper van and plan to go driving around the world. Everyone thinks you are mad, but won’t say it – well not to your face anyway. Although I have a feeling more people would understand the desire to travel than the desire to stop the Christmas ‘celebrations’? But I didn’t celebrate the 25th, and very surprisingly for my past Christmas record, it was a lovely day.
29th December 2017
For some reason I have struggling with the side effects in my head over the last few weeks. I am sure cold weather and being in a cold wind makes everything in my head tighten up and feel number again. When I am out I put my hood up on my coat as much as I can, but that doesn’t seem to be able to stop the tightness feelings.
1st January 2018
Last night we again ended up with no children around, and so were asked if we wanted to go to a local friend of a friend’s pub for New Year’s Eve. Yes, why not? I was fine about it, I don’t really see any more significance in the New Year being a new start than any other day of the year. The 18th May-
The pub was nice enough and the people who run it were lovely and chatting to us like friends too. But just a few minutes in and I don’t feel I fit there.
29 January 2018
Today I spent the day crying…
The final straw that started it was a letter from Tax Credits saying they were reducing our money by £50p/w as we had underestimated our 2017 income by £1000. With that I cancelled my small monthly donation to Water Aid and my organic food order from Riverford, as I simply couldn’t afford to buy organic for a while. And then I cried.
5th February 2018 -
Today I have finally written a formal complaint against the official reply letter I received from the health ombudsman about my initial concern and complaint that my GP’s failed to diagnose my tumour. The ombudsman apparently found there was no wrongdoing-
Sorry it has taken me so long to reply to your letter, but my husband called you shortly after we received your final report that we were totally dissatisfied and disgusted with…
Health Ombudsman Complaint -
Part 2 of my complaint about my complaint to the health ombudsman… I have listed only a couple of the summary points at a time, so I can include my comments I gave about each summary point in the same blog post.
The points I want changed or reinvestigating regarding my complaint against Glenlyn are:
Health Ombudsman Complaint -
Part 3 of my complaint about my complaint to the health ombudsman!… I have listed only a couple of the summary points at a time, so I can include my comments about them in the same blog post.
This one is mostly on the 2 appointments I had with Dr Vo -
Health Ombudsman Complaint -
This is a long post, and involved me looking at the various guidelines in online medical sites as to what the correct response should be with someone with the symptoms I showed. It actually makes me somewhat angry and tearful as I had so many signs that the GP should have sent me for an urgent MRI (something I did not know could happen-
Health Ombudsman Complaint -
Part 5, the final part of my complaint about my complaint to the health ombudsman!…
…The ending of this letter was written on my first part of this blog post. I have no idea if the Health Ombudsman will even address it, or on some bureaucratic bullshit they will once again find no fault with any of the GP’s or the doctors practice. But my next step is to contact the GMC about making a complaint about two of the doctors…
7th February 2018
I don’t know whether to laugh or cry?! Although I have actually done both… with a little added sarcasm…
We have looked back through both your complaint letters, and replied ignoring or twisting the comments written in your clinical records of me, as well as lied about things where you know you will be found guilty…
25th February 2018
Over the last few weeks I have seen at least 4 different posts from friends on Facebook (some have been shared posts) about people acting ‘badly’ and how angry, upset, insulted or hurt the ‘victim’ was by their various actions and that they, and others, decide how awful, rude, bad, nasty, chavvy -
Yes I do realise that some actions hurt quite a lot, a huge amount at times, some are most certainly not necessary, but is the person who committed the ‘crime’ really always bad or evil? What happens if they are a ‘victim’ too? Is there a reason they are behaving in this way?
26th February 2018
My dog is a short haired border collie called Enzo, he is super intelligent as well as being amazingly responsive to moods of humans-
28th February 2018
I am always grateful that my surgeon, Tim Jones, did an amazing job and that I didn’t have any major side effects from my somewhat risky brain surgery -
I was warned before surgery that I would get side effects, it was made perfectly clear that my head would never feel the same again and so every day the symptoms remind me I am alive and to be grateful for that.
7th March 2018
I am really struggling after this weekend. Trying to cope with the feeling that even my family don’t understand my ‘problems’ anymore. Or if they ever did? Or if I am just too sensitive? Maybe my weaknesses reflect their own worries and they are too afraid to acknowledge them?
Whatever…these last few days have sucked.
It started on Friday when I realised that my ring finger on my right hand doesn’t easily straighten anymore, it looks curled when I turn my hands upside down.
4th March 2018
I often go to pub/club gigs with Dave when he is playing guitar in his bands. I have been somewhere almost every week since a few weeks after my operation and never really had any problems, although sometime I cannot sit too close as the music feels too loud for my head.
Last night he was at a new venue and all seemed good; the pub seemed nice, there was a reasonable stage, a table and stools set up just to the side of the band -
25th March 2018
I have just had a load of tests due to the fact I have been getting lots of palpitations recently.
Then a little while later I was explaining to someone when they started and I realised they began shortly after the time I thought my follow up MRI scan was due last November. I have been getting gradually more stressed since then while trying to ignore it and tell myself all is OK.
27th March 2018
I have avoided toxins for years. I don’t drink, I don’t smoke, I avoid processed foods, refuse mercury fillings, don’t have fluoride in toothpaste, I don’t take conventional pharmaceutical drugs, I am an ex-
Yet before I knew a brain tumour was causing my health problems I was told I needed an MRI to find out if I had a rare problem in my brain, or possibly a problem in my spine-
28th March 2018
A little poem to so many…
It hurts to watch you drinking
Addicted to the lie
That happiness is within a bottle
And you need it to survive…
30th April 2018
I find this PDF hard to read ... as the time between being diagnosed with a brain tumour and the weeks of healing after were TOUGH. When I could barely move off the sofa, walking into the garden or to the toilet took major effort, I was scared to shower by myself incase I fell and then didn't have the strength to even dry my hair! I felt drunk beyond control 24/7, and was trying to hold myself together and ignore the constant spinning in my world. I couldn't see straight as much as I tried, nor could I look at moving TV or computer screens without awful travel sickness type nausea after just a few minutes, I often couldn't think nor explain myself without it draining so much energy it resorted me to tears... when my husband and family had to do EVERYTHING around the house, basically my kids had to ‘baby sit’ ME…
7th May 2018
“What have I lost?” Someone asked me these words a few days ago and I have been mulling it over in my head without really coming to an answer. So tonight I am asking my soul the question with automatic writing. This is the answer…
What have I lost? … And what have I gained?
1st May 2018
It was one day short of a month since my scan…
But I just have the news my head is…
16th May 2018
It’s mental health awareness week and so over the last couple of days I have seen various posts on Facebook in support of this, trying to raise awareness that struggling is ok and not a sign of weakness and its actually showing strength to seek help, as well as personal stories.
But a couple of the posts I have read, including one on a brain tumour support group, have had me in tears…
20th May 2018
One of my (possibly totally illogical) fears when I knew I would have to have brain surgery was would they shave a large part of my head. I know hair grows back, and it really is a minor part of all that is being done, but I have always had long hair and it’s felt ‘a part of me’ for a very long time. Thinking you might lose it is not something I wanted to face on top of everything else, when I was already feeling extremely vulnerable and didn’t want the world to know I was having brain surgery….
8th July 2018
Today these pictures pop up in my Facebook news feed. Memories of 2011. When I could paint. I have always loved copying art work and did these paintings for a friend. I loved it, getting paid to have fun and what felt like a skilled accomplishment. But today it just brings up some pretty strong and horrid emotions. I just cannot paint like this at the moment. By brain simply cannot do it and it’s so damn depressing!
I first felt like I was struggling badly with my art in 2015. I had tried copying some simple art work, and couldn't do it properly so made the images more abstract and a bit rougher. I think looking back I had been finding things slowly getting tougher than normal before this,…
24th May 2018
On Tuesday I woke at 3 am to a nightmare, that I was dizzily spinning violently. I lay there in the dark telling myself it was just a nightmare, until I woke again at 6 am doing the same thing, this time I could see the bedroom and the swirling vision that accompanied it. Dave asked me what was up and I said I went madly dizzy when I moved my head, and as I showed him how, I felt like I was on a horrid swirling fairground ride! Just like when I first sat up after having my tumour removed. Oh hell!
17th July 2018
It's our 21st wedding anniversary today!!... and Dave asked me earlier what i felt on Facebook -
I feel … A little old. My parents are the ones who can be old enough to be married 21 years! Not us! 💜
18th July 2018
Today I didn’t wake up until 10.15, but I still felt shattered, had blurry eyes and no energy. After half an hour or so of laying in bed I finally got up, had a shower and made some breakfast (even if it was past 11 am!) I am sitting eating it and just feel awful. I feel blurry inside. Like I have not slept all night and have a hangover. (If I remember the feeling of a hangover correctly-
I try and continue with being vaguely productive, even if it’s just basic household tasks and making lunch, yet at about 2 pm I give up…
31st July 2018
I read this quote today and I am ‘struggling’ with it…
“Don’t let your struggle become your reality”
Struggling with it!!!