Craniversary

This is going to be an odd post, there has been so much happening since my last post, I feel I need to flush my brain so to speak and put down a wall of text. It has now been a year on since my operation, I had planned on taking a day to myself but in light of some recent news from home I decided not too, more about that in a moment, I am still not sure what or if I want to make something of an occasion of the anniversary date, a few days later my wife discovered than many people actually celebrate, it has the name Craniversary, I will see how I feel about it next year. 

Just over a month ago now, my mother passed, it was not expected, but something that has been on the cards for some time, but still it hits hard at what was already a tough and emotional time, it wasn't until a few days later as we all started to unpack the news and process it that we realised that mum had passed at the same day on the same weekend, almost to the exact hour that paramedics were in the house attempting to stop my last seizure, a few hours later I was to receive my diagnosis. I was already having a tough time before the news, the weather was hot and really uncomfortable, I was not coping with it too well and struggling to work, the weather was set to get worse, making life quite difficult. The heat affects me in several ways, firstly, it saps all my energy, secondly, it makes my brain fuzzy so to speak, it is akin to having static electricity charging around my brain, lastly the dehydration, I am learning that as I dry out it affects me quite badly, everything becomes more twitchy and it is harder to think and focus, add all this to being in an emotional state it was a recipe for disaster.

The funeral it's self was nice, it was lovely seeing family which I have not seen since my wedding three years ago, I struggled with being around many people and having to explain what felt like a million times what has happened this last twelve months was extremely draining, at a time when I just want to try moving forward and not being defined by my tumour and surgery it certainly did not help, for family it must have been tough seeing me so broken, they all knew of my state and were aware that there were good and bad days, I don't think they really understood what a bad day really meant and how it affects me. Since the funeral though the weather has cooled and I have actually experienced my first good day in six weeks, while still far from great, it was brilliant, like a huge weight has been taken from my shoulders, although the following day I crashed a little, I still felt positive, the body was functional still and moving reasonably well. With the cooler weather I am hoping my confidence will return and I can try cycling once again.

With all the down time of late I have had a lot of time to think and get my thoughts in order, for the first time in over a year I feel brave enough to think further ahead than my next scan, about what I want to do with my life from here on in and what I want to change and prioritise, first and foremost is to look after myself better and make significant changes to improve my health, should the worse happen and the tumour return, I want to be in a stronger position as possible to fight this fucker off yet again, I am desperate to get out cycling and most of all get out and go bivvying and later on, get back into cycle touring once again with my friends, I so want to cycle over in Europe again and cover the coasts of France to Denmark, possibly even up to Sweden and Norway. With better health almost come the ability for my to be more present in work, as I become physically and mentally stronger I can be more present in work, this takes the money strain from my shoulders, to help keep my head above water I have sold all of my camera equipment and one of my bikes, right now I am considering seeing the others with the view of picking up something more universal that will cope with all of my requirements. Lastly, I am due to retire in about 16 years, more or less....Yeah I don't plan on retiring, that shit will kill me quicker than a tumour will, I recently discussed this with my wife, unless things vastly improve I cannot see myself returning to full time work, I will probably achieve a four day week which to be honest I really want, I was looking into it prior to my diagnosis as I was aware I was struggling, come retirement age I plan on dropping to a two to three day week, combine that with my pensions this should allow me to be financially comfortable and able to enjoy my later years with my wife. Lastly I want to pick up a camera again, when I get some spare money again I will pick up something and start again, I have missed it of late, not having my own transport and being kinda immobile and dependant on others to get around has been a little restrictive, I noticed that even from the relatively small number of photo's I have on my Alamy account I actually have sold some images, all small amounts but I would like to expand my light box and put some more content out there.

This is about all for now, the trouble with flushing too much from my mind is putting it into something that others can understand, I think in the future I should write down the bite size pieces to make it easier to write here later on, so thanks for reading and bye for now.

What works, What Doesn't?

A bit of a catch up, this blog entry might ramble on a little, sorry, I should post more often but honestly, I have just not had the energy. It has been a little up and down since my last post, I am finding it hard than I imagined to come to terms with the concept of a new normal, pre tumour Simon may never return fully, at the moment I am trying to focus on being consistent both with work and exercise and taking as much care of myself than ever before, many habits like stretching and proper hydration, things I would neglect previously are suddenly things I need to be constantly mindful of especially when it comes to my mental health, I am ever thankful that the good days far outnumber the and days now, and I am slowly learning to overcome problems that are going to be fairly common place for the foreseeable future, for instance, walking, while I can walk with an almost full gait now I get very tired quite quickly and I am left quite drained, the more tired I get the harder it becomes to coordinate the left and right hemispheres, the walk from the bus station to work was a prim problem and high lighted this, solution? Well I picked up a folding bike, I am lucky enough to be able to purchase a Brompton at staff prices which so far is opening up my world and adding a greater independence to my life.

Cycling is actually something that worried me, what if I was not able to ride again? Well I don't have to worry too much, apart from being out of shape and tired mush of the time I am able to cycle, better than before which is nice, combine the Brompton and my lovely Surly it will make a return to health and fitness much easier, given how much work I need to do this is going to be a long road. My plans and ambitions from before are still there, bubbling away on the back burner, getting back out Bikepacking and longer trips is where I want o see myself in a year, maybe two, provided I my six monthly scans are all clear this should be do able.

one thing I do want to do is re assess many things, a bloody good clear out of a lot of my old clothes that I no longer fit into, old bike parts in the shed, a change in my Bikepacking gear, clearing much of the clutter our in my life, maybe even build some more of the model kits I am accumulating, given I now am able to use my right had fairly well now I have no excuse. Anyway, signing off for now, I have a couple more entries planned that I want to get penned so to speak, I am even looking at the possibility of a video at some point.

Six Months On

  I have actually be meaning to post updates more frequently, all to often I am feeling fatigued and just about able to manage daily function, I am told this is to be expected but it is something I struggle dealing with, I just want to feel normal and get back to living, no longer be defined by something that is hopefully no longer in my head. My next scan is in May, I am now kinda oblivious to it, although I did feel a little emotional about a letter from the surgical team to my GP about what was happening and what was going to happen in the future. For the next fifteen years I am going to be receiving MRI scans on a regular basis to keep an eye on the little fucker, the surgeon believes a trace remains of the tumour in the central sinus canal, if it begins to grow I will receive Gamma Knife therapy and or Chemo therapy, if the mass begins to invade the brain tissue again or become more aggressive they are going to open me up again and remove the tumour. Strangely I am very at peace with everything now.

This week, apart from feeling a little cold and flu like I am doing pretty well, Wednesday is still my midweek rest day, I woke up yesterday and I actually felt good (snotty nose aside) big lungfuls of air, sun pouring in through the window, were it not for my cold I was going to try another bike ride, over the past month I have managed to put in an increasing amount of hours in work which although tiring has helped me feel better about myself, I am almost at the point where I can contribute to the household once again, it sounds a small thing but it is very important to me. I have often defined myself by how "useful" I am, what I can do and offer really, not being able to fix bicycles has had more of an impact on my confidence than I had hoped, I will be able too in the future but not being able to do something fought so hard to be able to do, well it kinda sucks.

At least with my health improving slowly I am making small plans for more fun and adventures, coming up soon I have an over night camping trip with friends, and a trip to Scotland in June and a bike event in July to which I am going to take my camera along too and snap away like I still know what I am doing. For now it is just more of the same, work on feeling better and improving my daily energy levels, roll on the first proper bike ride.

What's Next?

  A few thoughts from this past couple of months, it has been what can only be described as a year of hell, I think I have spent less than half the year actually in work, not for lack of a job but some devastating health issues, earlier this year, I popped a disc in my back, 6 weeks later I was finally able to return to work albeit with limited mobility, I was suffering from a condition known as drop foot in my right leg, it was severely affecting my ability to function, initial thoughts concluded that the sciatic nerve was being compromised thus the mobility issue, a plan was made to rehabilitate the back and hopefully return the leg back to full use, suffice to say, I never got that far. In late July 2022 I had my first severe seizure, I have had what was diagnosed as cramping issues in my right leg in the 18 months prior to this, symptoms were restricted to my right foot, a side affect of lifestyle issues. This new seizure affected the whole right hand side of my body, some how I went into work the next day, I was out of it and barely able to function, my boss took me to hospital and an initial diagnosis of Epilepsy was mentioned and appointments booked with the local Neurology department, once again, I never made it that far, a few weeks later I had another seizure, this time it would not stop, an ambulance was called and I was rushed into A&E, scans were done and in the early hours the doctor sat down with us and told me that I had a brain tumour.

Somehow I was okay with this "okay, what's next" was my response to the news, my notes and scans were compiled by the doctor and forwarded to the Neuro Surgeons at Southmead Hospital in Bristol who were having their weekly meeting that morning to discuss new cases. A couple of days later I received a call and a pre surgery appointment was made, I passed muster, two post Covid blood clots in my lungs were considered workable, I was diagnosed with a Parasigial Meningioma tumour, it is located directly over the right leg and partially over the right hand control areas of my brain, further scans also showed the tumour was in the arterial chanel between the two hemispheres on my brain, not a good place it seems.

Within a week I was back in hospital and 10 hours later a large part of my tumour was removed, to try and get it all out could have ended in paralysis or death so they did the best they could. As I write this I am recovering, it has been 6 weeks since my surgery and I have my first three month scan and review booked for mid November, I have motor function returning to my foot and leg, already walking is much easier than pre surgery, hopefully with a lot of work I will return to full function. I am desperate to get back into work, sadly I am aware right now it would be too quick, as I am still not as strong as I would like to be.

The last image is pretty much where I am at the moment, some motor control is returning to my leg and foot, and hand has recovered fully, I am hoping to start walking more and more, it has proven difficult as my normally tight leg muscles are stupidly tight at the moment, I may need to speak to the physio as the stretches don't seem to be making an impact, as for getting back onto a bicycle, fingers crossed I will be back in the saddle in a few days, sadly my cycling shoes are in work and I need to pick them up when I speak to them this Friday during which I am hoping a path can be made to get me back into work with only time off needed for routine appointments, in all honesty I would like to work just four days a week, the past few months has taught me that nothing is worth my time more than me and family, given how much I really like my job this is something significant. Next battles for me, staying consistent with movement, working, my first scan and check in with the surgical team in November, fighting the seizures and trying to prevent them and slowing the further onset of depression all the time hoping the remaining tumour does not take the diet too personally and try to kill me.

Sleep mat

36 hours on, and I am still staring into space a little and my body feels like it has been beaten more than a little!

I have slept outside on many a winter night in the past, I actually enjoy it a great deal especially those cold starry nights, there is nothing quite like it. Thursday night was to be for me and Sandy a school night bivvy, no real difference we just have to wake a little earlier and ride into work and a big coffee n porridge, and a change of clothes and normally I am human once more. Right now I am bigger, fatter, and a whole lot less accustomed to being outside which in turn makes thing much more difficult, wrapping up against the elements is a real challenge for me.

The over night stop was not far, a location we have used quite a lot over the years, for many reasons we like it, great sunset/sunrise, off the main path, and above all ease of access to work for school night runs, already the temperature was dropping, I was feeling it already, the wind had a real edge to it, thankfully we would be home before the impending storm this weekend swept in. Even though the sun had already set there was a lovely red glow in the sky, one of the local farmers was still out ploughing his fields, rollin on along the canal bank I could see a couple of Barn Owls heading out to the night time hunt spots, I was now really looking forward to a coffee.

When I arrived Em was already there, he spends so much time outside that I think he no longer feels the cold, relaxing on a bench with a cuppa and a lump of ginger cake, it was delicious by the way, It was at this point that I noticed one almighty mistake......I had forgotten my sleep mat and a few other bits and pieces, disaster? Well no, I had faith in the rest of my gear, I knew it was not going to be my best night ever, but I have had worse and much colder too. So we got the fire lit and waited for the others to arrive.

The chatter flowed and every one had good catch up, thanks to illness it had been six months since I was able to catch up with my friends properly, It was a much needed night out for us all, my night was not too bad, I would wake up hourly, cold and uncomfortable, roll to a new position and that was night night, about 2am the rain turned up as expected, while not heavy yet everything outside my tent was properly wet now. I was eventually woken by my alarm, normal time of 6am, I packed up the inside of the tent ready to load on the bike, mostly to reduce my work later, tent was dropped and packed and I was on my way, I was warm and comfortable, even with the weather, my legs however after a night on the hard ground did not want to play, times like this you just have to ride at the level of the body and enjoy it as best you can, the Resto of the day in work sunk into a brain fog as sleep deprivation set in, home time and the train home could not come fast enough, a hot bath and a cuppa or two were really needed.