Well its been a very long time and so much has changed, my life is different now in so many ways.
I had a fab time in December presenting at the first Adolescent and Young Adult International Congress in Edinburgh it was one of my dreams come true. I met so many influential healthcare professionals and researchers who really inspired me and ignited the fire in me to progress on my PhD (I will do a post on the whole experience).
You see in August I had to take an interrupt of 6 months from my PhD due to ongoing health issues. This was a big and scary decision and I spent a lot of it feeling like I had lost my identity and didn’t know who I was. During this time I had numerous appointments with the pain clinic, neurologist, psychologist, GP and cardiologist.
PAIN CLINIC: I was informed that I had all over neuropathic pain along with muscle spasms and spinal issues. As a result I was asked to see the psychologist to assess whether the pain clinic would help me. I saw the Psychologist and spent 2 hours with him, to be informed that there would be very little they could do for my pain other than pharmaceutical intervention. I was also told I had many complex issues and needed to see a Psycho-Oncologist to work on PTSD, anxiety, depression, social isolation, self-esteem and help change my lifestyle.
NEUROLOGIST: I was referred for a brain scan as I have been experiencing worsening cognitive difficulties (memory, word loss, planning, slow at many tasks). The brain rested was ok structurally however I will be pushing for an fMRI as this is what will show where the brain is struggling during cognitive tasks. I am also still 8 months later waiting to see a Neuropsychologist to have further cognitive assessment. Whilst I wait im still struggling and am resorting to making endless reminders, but forgetting the reminders!
CARDIOLOGIST: I have been collapsing and getting very dizzy and constantly breathless doing the smallest thing (folding clothes) as well as getting Cyanotic and changes in BP. Structurally my heart is fine, however I need further exploration of my arteries and lungs. My heart rate has been rising again despite medication.
GP: I am severely deficient in vitamin D so am taking daily doses. I also have been diagnosed with thoracic syndrome, where nerves and muscles in my spine fire up and spasm causing unbearable pain in my hands.
I also suffer really badly with my digestive track, with most food irritating my tummy, I also have IBS.
So that’s the health so far!
Christmas was difficult, HE was very distant and wanted to be alone a lot so I didn’t really enjoy it sadly. And after seeing in the new year, HE decided one morning (after cuddling the night before and talking about our future) he didn’t want to be with me anymore. And that was that.
SO now I’m back home at my parents, 29 in May and still at home! But in all honesty I feel so much better being home. I was upset for a few days but then I was ok, I suppose the relationship wasn’t right if I was over it quickly. It was made easy by a few of his actions and I have since re-assessed who my friends are after a stupid lil shit down south decided she would rub in the fact that he went to see her. I told her she wasted no time and the same with him.
My family (under my orders 😝) spent the week moving me out after the house was left empty (leaving the property empty, despite it being someone else’s responsibility to look after it) and a pipe had burst flooding the kitchen to the point the ceiling had fallen through. The only reason I knew this happened was when I went to collect something from the house and I walked into that. I was left to deal with it cos it couldn’t be left, my brother had a gig that night and I really wanted to make it. He finally showed up after me impressing the urgency and enormity of the issue. My Dad had left work early to come help as well as my mum (who had just finished dropping of the band gear). The next door neighbour even tried to help (the stop tap was broke) which was so embarrassing as it wasn’t even my house nor was it my responsibility, yet I had to get people to come help me. I was mentally exhausted but didn’t broadcast how scared and anxious I was, someone had to deal with it! Someone had to MAN up as per and I did…very well I might add!
As for moving my Dad and brother were left with packing up and transporting my stuff and left to deal with the rubbish etc which was from both of us. I finally found the strength to say NO! My Mum, Dad and Brother are tired and in a lot of pain, they all have health issues. My Brother also had revision to do for his A-levels and my parents work full time. Its been so emotionally difficult as I’ve tried not to be angry, but after thinking, I can see the job of moving and sorting the house has all been left to my family despite it being both our rubbish etc. I will be glad to see the back of it all! My family have gone above and beyond for us for the last 3 years with no reciprocation, its my time to say ‘I can’t cope, I can’t do it!’ Cos in all honesty I’m so ill from it all, but I’ve not gone on about it and complained (like he has!). AND the plot of why things went wrong thickened and the truth about him came out, lets say I am NOT surprised in the slightest, but I’m truly sickened.
I’ve vented so much in this post, but I’ve had to get it all out. I need to stop being a push over and trying to help everyone cos most of the time people take the piss out of me and see me as a walk over. No more! As far as I’m concerned now my Family are the most important people as well as a few friends (you know who you are).
Now I have 3 months more off University due to the stress of the whole relationship break down and moving house has made my health shite. I’ve been ill for 2 weeks with a bug and obviously fallen behind as a result.
Sorry for such a negative post but I needed to say it and share with those who also have late effects from cancer the difficulties normal life experiences take its toll on us. It can be tough at times, there’s times I’ve not wanted to wake up, very dark times and a lot of pain and flare up as well as new conditions. BUT there’s always a light (that never goes out 😝), we are a strong group of people, battling every single day to try and work through our endless conditions, and we have each other’s backs despite not seeing each other that often, we pull together and that’s special and very precious to me. I also have some great friends who haven’t had cancer who are their for me (Emma, Joe), who give me a sense of normality when I’m with them 😊
I’m off to try and sleep now (00:44) and I’m wide awake as per.
Night Night x
P.S. I am NOT sorry for my honesty in this post, if you don’t like it, then you shouldn’t have given me material to write about…