Surviving Brain Cancer in a Precarious World

in #life6 years ago (edited)

Part 23: Happiest 31 Year Old...

Reaching my 31st birthday I decided to rebel against the stereotypes and celebrate getting older as an achievement rather than a thing to be afraid of or embarrassed about. I also wanted to rebel against the lack of social events I would have to celebrate a birthday in my 20’s due to the brain tumour causing me to have social anxiety.

So far be it from having a simple grown-up meal out, we went to one the UK’s biggest indoor trampoline parks. It turned out to be a lot of fun but also made me realize that although I had been working on strength for the past few months, my cardio fitness was some way off because I was already tired after half an hour there.

My fiancée was also surprised that her fitness levels had dropped since she had stopped playing badminton. I was just happy to get a score on the trampoline basketball alley on my first attempt which seemed bizarrely unrepeatable.

That evening we met up with some of my fiancée's friends for a meal which was the first time we got to meet their newborn. For us, this was incredible because we hadn’t been around a baby since before I got ill and we both knew we wanted to be parents more than ever since life had shown us how fast and fragile it can be.

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When going home I felt rough for the first time in ages like I was catching something. It felt like an ear infection which I probably subconsciously made worse by the fact that once you have been through something like cancer, its never feels like “just a cold” anymore whenever you are feeling anything but 100%

Sure enough the next day I felt rubbish like I had the proper flu so I just ended up resting for most of the next day. The only plus side is that when you are on a ketogenic diet, these benign bugs last no more than a day so beyond this period of rest I was straight back to normal by the evening the day after my birthday. The only thing that lingered was the ongoing worries about whether my seizure threshold was still too low from all the stress I was under dealing with the new house.

When we finally moved in it was the 21st of January 2017 which was a whole month after the builders had prematurely kicked off the mortgage. At least we now had them fix their ridicules snags like the nails they left sticking out of the floor so we had carpets in and were able to start moving all our furniture in from storage.

My parents came to help with the move in with my Dad and my fiancées Dad driving the vans. It was great to have them there for the first time knowing all the stresses before Christmas was now well behind us and we could all look forward to our wedding which was now only 4 months away.

My workmate who commutes would now pick me up slightly closer to work so I now only had an hour to get to work and back. That February we were traveling back after I had struggled to work with a slightly higher level of fatigue that day which I put down to the fact that I was getting fed up of the short daylight hours in late winter.

When I got home I knew my fiancée would be back an hour or so from her work so I decided to work on my own 3d projects on my computer which was now located in our new tiny box room. I had not been working very long until I suddenly had the same feeling I had the last time I had a particle seizure.

The twitching was much more painful this time though so I tried to get up from my desk and make it to the bedroom to calm down. As I stood up I was overcome by dizziness and the last thing I remember seeing was a computer speaker on my desk falling on its side.

The next thing I remembered was seeing my fiancée looking at me and asking me if I was okay with a very concerned look on my face. It took me awhile to come around from the confusion and speak. I said I was fine with a very confused look on my face. She responded, “Well obviously you’re not, what happened?”

It was only at this point that it came to me that I had suffered a seizure and told her. which upset her because she hated the idea of this happening when I'm on my own. I then remember her helping me downstairs because my legs were full of pulled muscles again.

When I was downstairs recovering and trying to calm down, I was going over what happened with my fiancée to work out how long the seizure had been. We agreed it couldn’t have been long given that she was due home half an hour after I got back which was roughly the time I was working to before this happened.

The strange thing was I recounted that I was sat on my office chair when I first saw her and she asked me if I was okay. She said I was in the bedroom and that I had just come out of the ensuite.

I only found out she was right when I went back upstairs to get an earlier night sleep and saw that the office chair was on the floor and the speakers were on their side on the desk.

This freaked me out because It meant I had suffered a grand mal seizure where you go unconscious and I could have seriously injured myself when falling in such a small room close to the top of the stairs.

Because nothing had shown up on the emergency scan I had the previous November I felt bad because I had again been asked to extend the wait for my next scan but because of this second breakthrough seizure, I would again have to bring it forward to make sure this seizure was not the result of a recurrence.

By now I had great contacts for cannabis oil so I decided I would take 3 caps of Full Extract Cannabis Oil before this scan while also in a fasted state to help put my mind at ease from anything bad showing up.
This turned out to be brilliant in terms of relaxing me during the scan but a very naive move after when we went for lunch after the scan to start my re-feeding process.

This is because when cannabis is ingested, it goes to the liver and produces an extra chemical called 11 Hydroxy Metabolite which reacts with the THC and turbocharges its psychoactive effects as 11-Hydroxy-THC.

My first symptoms while having this meal were that I felt very cold and shivery. I started losing touch with reality like nothing was normal. Essentially, I was what’s called “tripping balls” where you have gone beyond your usual tolerance for THC and simply need to sleep off the trippy feelings.

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Luckily we were not so far from home so I was able to have a nap within the hour. Just like I had researched about such reactions, sleeping is all it took to return to normal.

I couldn’t say the experience was easy while I was out and about because at the place we had lunch my fiancée's sister worked so while I was “tripping balls” I was desperately trying to act normal in front of them both but everything felt like I was dreaming so I was very self-conscious and embarrassed to be this medicated in front of a future in law.

I had never had an experience with cannabis like that before because I always just vaped the dry buds before bed so I would have been asleep when the full effects kicked in regardless of high potent it was. What was clear though was how vaping in the daytime would still induce a milder psychoactive effect that may even be pleasurable with no trippy effects.

I later found out from the person who supplied me that the most they had ever taken was 2 pills and it had flawed them so it was just simply I had gone too far taking 3 caps in the hope it would calm me down for the scan which it did, but 11 hydroxy reactions can take up to 2 hours to really kick in.

The positives where that when I woke from my sleep all the muscle pains from the seizure had completely gone and I felt well rested like my body clock had been corrected. I was also performing much better at work, able to think much more creatively with none of the fatigue and brain fog that the ratio therapy had left me with for just under a year by this point.

I had ordered a DVD of the MRI to again get an early report of this results. Unfortunately this time it arrived late so I had to go to my Oncology meeting not knowing the results beforehand. I think because I was still feeling so much better from the high THC experience that my anxiety regarding my results was much less uncomfortable than when I had gone for my first post-treatment results.

Again these results were clear which kicked off the same emotional relief from my fiancée and me. My Oncologist said he wasn’t concerned that my seizure was worth any further investigation because they were still rare given the last one was the previous November but said if another one was to happen he would refer me to an epilepsy specialist to investigate possible triggers or look at alternative medication/dosages.

I just felt great that my scan results were again clear and this time my Oncologist was confident enough to extend the wait for my next scan to 6 months. This meant I wouldn’t have to go back for a scan until September 2017.
I was getting to a stage where I felt I could manage my cancer by remaining strict with my diet and lifestyle.

Epilepsy felt like an almost unavoidable consequence of the post-trauma both emotionally and physically from the previous year. I noticed with all the survivors I knew that epilepsy tends to be the underlying problem left from their first year getting treated for cancer whether it was from surgical or radiotherapy-induced brain damage.

By March the weather was brightening up so I started to try more yoga outside in the garden which still needed a lot of work since moving in. There was so much to be excited about in the months to come because my favorite band Depeche Mode had kicked off their Global Spirit tour and my tour friends had already got me a ticket for their London show that June at the former Olympic stadium.

There was also my wedding which was now only a month away so there was a lot to organize. It wasn’t until we got down to the legal details that we hit a problem. Because I had previously been married, the church we wanted to get married in which had been in my fiancées family for generations, refused to allow us to get married there but would at least offer a blessing.

Initially, this was heartbreaking for me because I felt so guilty that my fiancée had to have her dream wedding changed just because of the outdated decision by her local diocese. So we went to the Chester registry office to see about getting the wedding done there the day before the blessing at our church.

We then hit the further bad news. My paperwork to prove I was no longer married was incomplete and more importantly needed translating from Swedish to English. This really upset me because they also had a very tight deadline to get the correct documents or it would be impossible for us to get married the following month.
This was serious because we had already paid the venues and we had lots of my family due to travel from Canada for that wedding date. This made me feel unbearable stress levels again.

It was not just those stresses that were getting to me but the fact that I had to delve into dealing with the Swedish authorities to get them to send me specific documents and I felt outraged because this is where it felt like my ex-wife had left a trap for me that would ruin my future plans like this.

First of all, it transpired that she had changed my surname to hers somehow, which meant having to also get the Swedish authorities to correct this so that all proof of the divorce was to my correct surname. So it wasn’t just that I felt guilty for having this baggage effect my fiancée but how my past naïve mistakes had come back to haunt me.

Within a week I had all the correct paperwork from Sweden. We then had to rush to our local registrar to meet their deadline which turned out fine. My fiancée went to work from there and I got the bus home. On the way back I felt so tired from all the stress and urgency to get these silly paperwork obstacles out of the way.

That weekend I woke up fairly early because I was not used to the brighter mornings it was before 7 when I take my first anti-seizure medication. I went into the ensuite, did my business and on my way to the sink I quickly felt my heart rate pick up and the most rapid start to a seizure I had ever experienced awake.

As my legs were painfully twitching I remember trying to call out to my fiancée or at least open the door but I couldn't speak and I then got incredibly dizzy to the extent where I again couldn’t wait to pass out. The last thing I remember seeing was blood dropping in the sink as if I had hurt myself falling. Strangely this never happened and was just a vision.

I woke up in bed with a paramedic calling out my name, this immediately freaked me out because I was still confused as to what had happened. My whole body was shaking due to this shock. The paramedics just seemed so out of place in our bedroom, my fiancée was in tears on the other side of the bed telling them what happened.

She told them that I had gone to the bathroom and the next thing she heard was a loud crashing thud on the floor, which she thought was builders still working on the estate. She then heard more noises and went to investigate and that’s when she found me having a seizure on the floor in our tiny ensuite.

She found me with my head in the gap between the toilet and the shower and I was already coming around but hitting my head on the bottom of the toilet bowl trying to get up. To stop me hurting my head she tried to pull me by the legs to get me back into the bedroom but I was a dead weight with how stiff the seizure had made me.

Apparently, I then got to my feet and then puked in the bedroom and went back into bed which I have no memory of. I must have been in this non-memorable state for quite some time because it was only when the paramedics were there that I recall coming to consciousness.

The paramedic closest to me was trying to calm me down while taking my vitals while the other made notes from my fiancée and the other paramedic's readings.

Eventually, I started to calm down and the shivering stopped. They told me they would bring me to Chester A&E to make sure there was nothing else wrong with me due to my persistent fast heart rate. I remember having huge trouble trying to get dressed and walk downstairs because all my muscles were pulled again.

The whole situation felt surreal and scary as I walked outside into their ambulance parked at the back of our house. In the ambulance on the way to Chester, I felt very sick from all the adrenaline and fear I was experiencing. My fiancée was following the ambulance with her dad who had come to pick her up as she was in no fit state to drive.

When we got to the hospital the sickness didn’t go away because the whole situation had a depressing feeling like I was going backward after all the progress I had made fighting cancer. The seizure also hurt a lot more than the last one because even the slightest movements were hurting my pulled muscles. It was also slightly soul destroying seeing it scare my fiancée and her father.

My parents were kept informed by phone this time as it was becoming clear that my blood results were fine. They had taken me into the hospital because my heart rate was very high but at this point, we felt it was a silly reaction because the only thing that put my heart rate sky high was seeing paramedics as soon as I woke up from the seizure.

The problem with waking up this way is that a seizure can cause huge amounts of confusion when you are waking up, so if you first see a paramedic, this can just bring you back to your very first experience being woken up by a paramedic which is how my whole brain cancer journey started. This leaves you fearing the worst while you can’t even remember the seizure starting or where you are/how you got there.

When I was released from the hospital, my fiancée's father took us home. It was still such a sunny and warm morning so instead of going back into the house I just simply grounded myself on the garden grass and relaxed in the sun. As all this had happened so early it felt surreal that I had even been to the hospital that day.

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As soon as I was properly grounded and my skin was warming up in the sun I felt as if nothing bad had even happened that morning, instead of analyzing what had happened, I ran with the relaxation and made the most of it. I knew my referral would now be put through to Walton to investigate why I was now having these once a month seizures while no cancer was showing on my scans.

To Be Continued…

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Thanks for sharing this personal story. One of the worst things when you have cancer is to see your loved ones suffering around you. My younger brother survived leukemia - 10 years now. I hope your story inspires someone

Thank you very much! Great to hear you know a long-term survivor, that's what I like to hear.

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