Well, none of us saw that coming did we? Which to be honest is a little naive on all our behalves. We knew this happens, has happened & would be due to happen again, so really it’s “our bad” that we took it for granted, a supposed “once in a century event” hit us all like a ton of bricks. None of us, not anyone I know anyway, was prepared or believed it would really happen, or more so, didn’t even think about it ever happening. I know I didn’t.
Anyway, it did & here we are. For the most part of lockdown 1, I was like a stunned mullet. I can’t actually say I have ever seen a stunned mullet but I’m assuming I looked very much like one, you know, like the emoji 😳 except with a more 😵 to it. I was in total disbelief, shock, fear & felt like I was in a dream or rather a nightmare. Didn’t we all? All of my protective emotions came out in force, ready to shield my family in which ever way I could but the simple fact is, I couldn’t protect them. I mean, I could to a degree & I did. My sister & I instructed our very vulnerable parents to do as they were told. Don’t take unnecessary risks, don’t go to the shops (we’d do that for them) and don’t even look at anyone!!
Okay, the last part isn’t true but I felt like that. The fear of death became even more intense for me. The fear of losing one of them has always been a huge issue for me since I was a child (which we now know is called “a death phobia” probably due to my ADHD. It’s a known & very common symptom in people with ADHD. At the time I’m sure I was looked at as “just an insecure kid” a little “off key”, a kid in her own little world all the time & overly imaginative. We also had a lot of death very close to us as kids, a lot of illness & saw it in all its ugliness. I was all of those things then & I am all of those things & worse now, because now, we had this Corona Virus & I couldn’t do a damn thing about it. I don’t like not being able to fix things.
So without further a do, Corona virus to one side for once, I’m back. I left off with another traumatic post to write. My incredible dad, yet again, was cursed by cancer. I knew it was. I knew that his stuffy nose, blocked sinuses & loss of smell wasn’t just something minor.
To say I was angry with the doctor doesn’t even cut it. My dad is a multiple cancer survivor. Melanoma, taking away a good portion of his face, basil-cell carcinomas taking literally hundreds of chunks out of his entire body, another “spreading” of the first melanoma then taking more chunks from his neck & chest. So he was & still is, a HEAD & NECK cancer patient! So why, WHY would I they not send him straight away to be looked at!? Nasal issues……the nasals passages, where are they? in your fecking head you dimwits!!! (I didn’t say this to them but I was pretty clear in stating my thoughts) I was so mad! I called & insisted on speaking with the GP & told them in no uncertain terms that on his records, they were to write in big bold “do not ignore” red letters that if he should visit them with any ailments, ESPECIALLY head or neck, GET HIM CHECKED!!! They obliged without argument (a wise thing to do when you have an irate crying, snotty nosed woman at the desk).
I’m a researcher. Not by profession, but by pure interest & in this instance, desperation. With my mums illness, I must have been typed it into various search engines a thousand times over the past 14 years. My sisters illness, my husbands fibromyalgia, my sons Tourette’s (yeah I know, I sound like I have Munchhausen‘s but unfortunately it’s all true). I’m probably…….no, I am, one of “those” people, doctors hate. I tell them what I think it is & we go from there. In no way, shape or form do I think I am some kind of self taught doctor. I couldn’t tell a kidney from a bollock but I know what i know through extensive & reliable reading, not just from “the net” codswallop but from watching seminars, reading actual studies by professors, reading factual papers. With my dad, I already knew. I knew it was incredibly rare but I knew the cancer I had found was what he had. Everything added up, EVERYTHING.
I spent at least 5 out of 7 nights researching over a period of about 5-6 years. I was obsessed. I stopped reading books which was normally my go-to & I replaced them with the internet, online seminars, documentaries, blogs, Twitter, YouTube, you name it, I watched it. I relied solely on “facts” I only read & watched proven factual resources. It went between mental health, desperately trying to find a miracle cure for my mums mental health, to “how to help a child with Tourette’s” or “how to help fibromyalgia”, “what causes fibromyalgia”. “Why do I have ADHD, OCD” It became an unhealthy & an almost, useless obsessive way of life. I was determined to learn & then fix.
I say “almost” useless, because it wasn’t totally. As I said, it was me that knew what my dad had. Nasopharyngeal cancer. That is the little bastards name that decided to invade my already long suffering dads pharynx. I also knew that it was most likely caused by a virus called Epstein-barr virus. Not that it made one bit of difference to anything but I just knew that it was that. It was about the second week of searching when I stumbled across an article about Epstein-Barr virus & it went from there. I asked my dad if he’d ever had a virus. He went through a few & then mentioned that he’d had a horrible virus in South Africa when he was about 21. “It wasn’t something called Epstein-Barr virus by any chance was it?” He looked at me like I’d just triggered a very long lost memory (which really it was). He had got this viral infection & was really poorly, which is why he hadn’t totally forgotten about it.
(Epstein-Barr virus is a double stranded DNA virus. It is best known as the cause of infectious mononucleosis) the cancer would have developed over years & years in my dads case but not been life threatening until it got to the stage it did.
When the four of us, my dad, mum, sister & I walked into the room to meet the specialist, we were greeted by two Macmillan nurses (kind of a giveaway) yet, my dad seemed to be oblivious to that. You’d think after all his previous cancer he’d know a Macmillan nurse from a mile off or maybe he just had tunnel vision & was anxious.
Either way, it was then that my fear was confirmed. All our fears were confirmed. Mum was still away with the fairies to be honest. The old mum would have been digesting every single detail, homing in on key words, making mental notes. This time that was down to me. I know my mum definitely didn’t take it in & nor did my dad. I know my sister took it in & understood it but didn’t know much about it. I knew. I thought I knew, just drop the research & it then it was confirmed
As my dad pulled up a chair & sat in front of the specialist who was casually perched on the edge of a table, whilst another man was sitting on another table (we took all the chairs 🤦🏼♀️) the specialist leant forward & shook his hand. “How you doing Micheal?” I’m like, come on!!! Just get on with it!!! and to my surprise after an extremely quick greeting, he did get on with it “you do have cancer”.
My heart felt like it had stopped. I mean, like I said, I knew anyway but you kind of hope you are so wrong! My sister & I kept exchanging looks of sadness, fear & utter dread. I looked over at one of the Macmillan nurses. I had never met the lady who my eyes had locked on but she had that beautiful friendly, warm face that said “I’m here for you”, I mouthed to her “I knew it” tears already silently running down my cheeks. She mouthed back “it’ll be ok” but I know that’s what they say, it’s what everyone says in times of comforting someone. The truth is, we don’t ever know if it will be ok.
My dad was picking the skin on the edge of his thumb. He leant slightly forward in his chair as if to hear better & repeated “I DO have cancer?” Like the specialist has accidentally left the “n’t” off of “do”.
He went on to explain what their findings were. As always, I was very vocal. I think for once, both parents were probably very pleased that I was. Mum wasn’t able to fight for him like she used to & dad was understandably in shock. My sister added to the conversation when I let her get a word in edgeways.
“It’s nasopharyngeal cancer then?” I directed at the specialist, he nodded yes. “caused by Epstein-Barr?” He looked at me & said “are you in the medical profession?”
After explaining that I had researched it & came across the articles I did, he praised me & said I had done my homework well. For a second, just a split second, I sat proud. For a start I don’t think I ever completed even one bit of homework at school & I had definitely never been praised for “good work!” I was a terrible student, disruptive, always laughing, hanging off my chair which was balanced on its two back legs. We now know of course that I have Adhd but at the time I was just looked at as a right pain in the arse. So, as I sat there for that split second I was so chuffed that I’d got it right & had found the exact cancer although extremely rare. I know I am intelligent, I am not bright when it comes to grammar as you may well have noticed but I have a lot more going on in that brain of mine than I am ever given credit for. I definitely don’t sound bright, I sound like an old fish wife at tines, especially when I get over excited. I sound, if not for a better word, thick. But I am & have been misunderstood my whole life & you know what? I’m ok with that. I don’t need to prove my intelligence to anyone. I know. Anyway, then I came back down to earth pretty fast remembering why we were there & my feeling of accomplishment was soon lowered to a feeling of utter heartbreak.
After the specialist had told us all his findings and explained exactly what it was and how the cancer works, we were led through to a room with the other man, who turned out to be a radiographer. We were all seated in front of him like school children whilst again he leant against another table and told us that he would have to give my dad extensive radiotherapy which came with huge risks. He then went into great detail about everything that, not could, but would happen after the radiotherapy
Loss of taste, maybe permanently, loss of hearing, possible loss of sight, burns to the skin, sickness, lots of weight loss….the list went on. But then the biggie came….death. He explained that they wouldn’t normally ever like to do such aggressive radiotherapy to the head and neck area once a person had already had aggressive radiotherapy to that area. He said there was a high risk it would hit the brainstem and he would die. The actual tumour was located near the pharynx, but this cancer spreads into the actual tissue, the bloodstream, lymph nodes & attaches itself to surrounding tissue & muscle. Incredibly, they caught it before it had reached out of the tumour area which is nothing short of a miracle.
He had never treated this type of cancer before but not only that he had never actually seen it! So he was going in blind, in his words. Not the most reassuring thing you want to hear from someone who is about to treat you. Of course, there’s a first time for everything & we didn’t hold that against this guy! To be honest, he looked as terrified as we felt!
I went to find the other specialist and told him that there must be someone else in this country. I also told him that I’d already found a specialist in Hong Kong who only specialises in this type of cancer and that we would get him to Hong Kong by hook or by crook. I was already planning a “go fund me” and various other fundraisers in my head. It’s turns out he knew of the Hong Kong specialist. He also knew of a specialist that MIGHT consider seeing our dad. I begged him to go & make the call. He went off for quite a long time & finally came back and told us that the specialist was willing to see my dad, that was good enough for us! There was no way we were going to go with option one, we needed the absolute best & that’s what we got. We owe them everything!!
We later found out that he wanted to take my dads case on not only because he wanted to help him obviously, but because it is such a rare cancer & they wanted to learn from it & see it in real life not just in a text book. We were so grateful, words can’t even express the relief when we finally made that trip to The Royal Marsden to meet him in person & get this plan in Acton.
After various scans, teeth X-rays, bloods, measurements & lots of meticulous planning, a date was set. My dad had a cast made of his head, neck & face. Imagine Hannibal Lector’s mask but covering the whole head, that was it. It looked horrific. My dad had a panic attack the first tine he had the radiotherapy because he wasn’t allowed to move an inch. If he was to move, it could hit the brain stem & that would he that. So to ensure he didn’t move, after having the head gear put on & secured, he then had to lay down & literally be strapped to the bed. I can only imagine how that must feel. I don’t like being smothered, my husband will often overwhelm me with hugs & kisses & it’s not long before I have to get my own space back. He always laughs & says that he counts, to see how long I’ll stand him being too close to me in bed when we are sleeping. I love cuddling, but I don’t like his face right in mine so I can feel his breathe because I feel like I can’t breathe (another thing I’ve learnt could well be due to my adhd).
After that first session & my incredibly brave dad having to endure such horrible things, they prescribed him some diazepam to help calm him. He never ever takes meds, not unless it’s an absolute necessity, so I knew it must have been bad for him to be popping one before he went in.
Skipping to months ahead, 3 stone lighter due to not being able to eat a thing apart from forte sips & water, my dad had completed his treatment. His hair had gone from the back of his head, he got colder than he had ever before but that was about it! In fact he was feeling great! I must add that throughout this whole process we had just started renovations on my house. We had gutted the lot! My dad, my neighbour, my husband and I, totally ripped out the insides of our cottage. Dad did 5 days a week radiotherapy & came home some weekends. He never once didn’t come to the house to work. Even if he couldn’t physically do much (although he did loads!!!) he was there. We have never ever heard one complaint from my dad. Not for the whole time he’s had cancer, from the age of 34 (his first cancer, melanoma) & skin cancer ever since, he has never said even a hint of a complaint. I haven’t met a man like him, or a woman for that matter. He’s a total legend. He’s my hero.
So here we are. 2021. In a pandemic. 2020 was bad enough but we are all still here. My dad is doing well, he has checks regularly at the Royal Marsden. He is eating well now, although some things never tasted the same again, he’s gained weight but still very slim. He’s lost a lot of hearing through the radiotherapy & he still gets very cold, to the bone cold. He’s now on thyroxin as his thyroid function was disrupted. He can’t afford to have any dental issues whatsoever, if he did, he’d have to have bone grafts as he’s jaw bones are very weak. He is still in danger of getting a broken jaw easily if he’s not careful. He now limps slightly but that could just be his age (71) and he generally hurts a lot more but don’t we all as we get older! Aside from those aliments, he’s AMAZING!! cancer free thus far 🙏🏼
Mum is still very ill. That won’t ever change. She’s brain damaged & her cognitive thinking is absolutely shot to bits. She’s slower than slow. She gets so confused, forgetful & in a total muddle. My sister & I more or less take care of everything for her, from medication, hair cuts, cleaning, shopping etc. We take her shopping & she chooses her items herself but we unload it, put it away etc. It would sit on the table for hours if we didn’t. She does manage very basic tasks, putting on washing for example although it will then sit wet waiting for one of us to come & hang it. Every single thing is overwhelming for her. Tasks we do everyday without a second thought is like climbing a mountain to her. She’s paranoid, sometimes totally delusional, sometimes psychotic, severely depressed, anxious & generally a compete shadow of the person she once was BUT she’s here. Is she here happily? Does she want to be here? The answer to that is no. She’s not happy. She tells us on a regular basis she doesn’t want to be here. She’s has little to no enjoyment of anything, apart from reading which is an absolute godsend! The only thing that ever really makes her genuinely smile (not fake smile) is our boys. My sister & I both have a boy each, 16 & 17.
Everyday is hard. It’s hard for her & it’s hard for us. Now almost 14 years down the line from her first suicide attempt it’s still just as hard. I haven’t or can’t get over it, I have tried, I will never ever come to terms with the things that have happened, the things I have seen. I do however, now accept them, that took me a long long time. The mum we knew has gone forever but we have a mum & that’s good enough for me. My sister & I cope very differently but then we are very different people. We are incredibly close. I absolutely adore her. We drive each other nuts at times (I do get more than she does me) but we have a very close bond, I am very protective of her & if anyone ever does her wrong, I am there, ready to kick 10 bags of crap out of them. Of course I don’t, but I want to!! I saw a lot more than my sister has ever seen. I was there in France. I saw her try to kill herself at my house when she was staying with us at the time. I’ve seen her at her absolute worst, fighting staff at the psychiatric hospital, running in the middle of the road trying to get hit by a car, trying to jump out of my car when I was driving at 40mph. I’ve been at the hospital daily, sometimes 3 times a day when she called me because she needed me there because she was so terrified, only to get there & be told I was evil, sleeping with my own dad, a murderer, a prostitute 🤣🤦🏼♀️ you name it, I’ve been it!!
I saw her in that psychiatric hospital in Toulouse after she had cut her wrists. Running to her down this long black & white checkered hallway to embrace her in my arms, only to be pushed away & told “get the fuck away from me you evil fucking bitch, how could you?!!!!!”
I was there. It was me for the first & worst parts of this whole nightmare, dealing with it alone. Dad stayed in France whilst I bought her back to the Uk for medical attention. My sister was running a pub & of course we both had little ones then, both worked full time too. To this day, I don’t know how I, how we, did it & still do it now.
Eventually we all came together as a family & now have a pretty good routine place but I took the brunt of that first year or so. I say that with no malice, no nothing, just stating facts. It was so hard & I’ll add, that on a lot of occasions, my sister took care of my son so I could deal with mum. He loved being with his cousin but that’s not the point, I should have been with him. I made up for anytime I wasn’t with him which wasn’t loads because he was at school for most of it but I had tea parties, for no reason, not a birthday or any special event, just to give him the best time. I’d invite everyone, I mean like the whole class! I’d literally be running on adrenaline as it was but managed to whip on the “everything is hunky-dory face” as we all do & give him some fantastic memories I hope.
So that’s it’s all about wrapped up in one. Everyday is a challenge, we never know what which mum we will get on any given day but we deal with it. We each have our own way to deal with it. I have just completed 6 weeks of counselling as I was diagnosed with PTSD (no shit Sherlock!) & I found it very helpful. I have been signed up for another 6 weeks as she thinks “I need more work” 🤣 which, joking aside, I do. I find huge satisfaction in doing up cottage our cottage, doing any DIY, making things (mostly making a mess) & running my insta account (which by the way is @renovating_alvine_cottage) in case you fancied a peep at my shenanigans. (Plug plug) 😉 I care for my mum full time now. My sister does one day a week & it works better that way. I am beyond exhausted but something will have to give eventually & I can’t let that something be my own mental health.
I’ll be back when & if I feel like it. I hope that if you have any experience with any of the subjects I have spoken about, that you know you are not alone. It can be an incredibly lonely experience no matter how many people you may have around you because the fact is, if they haven’t been through it themselves, there is no way they can understand how utterly horrific it is.
Stay safe. Stay mentally well 🙏🏼
T x
#fckyoumentalhealth
#fckyoucancer
Dad 1
Cancer 0
Mental health (poorly brain) 