Februarys Fuckerys

Morning All ❤️ hope everyone is good and Lady Universe has been behaving for you all. Shes been drinking cheap wine and taking out her drunken mood swings on Toz again 🙄

So the last blog left you with Thomas's trips to a&e and urgent care, and his adrenal gland appointment. In preparation for his follow-up in April, he has 3 tests to complete. 

The first is the saliva test. This one is a 'try but dont worry if you cant do it' kinda thing. Its like a little vial for blood but inside it is a piece of fabric. Thomas has to chew this and soak it in saliva. The problem with that is - he has no saliva. The dry mouth is a side effect of radiotherapy damaging his saliva glands so its either thick stringy mucus, or Sahara dry 😔 Thomas keeps a bottle of water next to him at all times to lubricate his mouth but with this test he cant eat or drink for 30 mins before doing it. Its looking likely this wont be happening but he does have until end of March so maybe if he starts producing some moisture before then, he will attempt it. 

24 hour piss collection is test no2. Big jug like you get screen wash for the car in, with some kind of acidic preservative at the bottom, which means no peeing directly into it. (A chemically burned shlong does not need added to his list of ailments!) So an empty coffee jar cleaned out is the middle man and he does this collecting for 24 hours, then takes his collection to the doctors. 

Test no3 is the steroid test. To see what, if any, excess hormones are being produced they give him 2 low dose steroids, what he takes at 11pm, then hes over to the hospital at 8am the next day for bloods. He hates them taking blood. Hes always like "you took my blood last week, can you not just use that?" 😂 this suggestion hasn't worked as of yet...

So thats the adrenal situation and hes back for the follow-up in April to see whats what. Back to all the other mental shit thats been going on since the last blog. Honestly, when I tell you this man is a fucking warrior, I mean it whole-heartedly.

Thomas had started showing some really positive signs of improvement about 3/4 weeks ago now, then nosedived drastically after what they believe was a viral infection thay just floored him. He recovered from that, but since then hes been getting really dizzy whenever he stands up. Its so bad that hes blacked out 3 times now and it turns out his blood pressure is crazy low.

He speaks to his nurse, the sunshine that is Poppy, when she calls to see how he is, and she suggests a gp appointment and to mention potential 'postural drop'or 'postural hypotension'. 

So the next day I make him an appointment. The doctor does his blood pressure and its ridiculously low. She does it again. Low again. At this point she tells him hes either going to a&e in an ambulance or he needs to get someone to take him straight away. So he follows that advice to a T and drives home 😭  My mum comes round to watch the kids and we head straight over to KGH. Its rammed 😭 He gets a seat and i book him in. Obs done. Blood pressure still crazy low. Has an ecg. Take bloods. Dr Reviews him. Does a lie down/stand up blood pressure test and concludes the virus hes had has either really knocked him, or potentially the receptors in the neck which control blood pressure (theres a medical/scientific explanation somewhere, but that somewhere is not here) - have been damaged by the radiotherapy...Ok. But why has it only just started happening? 

They send him home and suggest a 24 hour blood pressure test through his gp. Im on it first thing the next day. Request a gp appointment,  explain he needs a 24hr blood pressure test, blah blah blah. Thomas gets a text sometime later- We have referred you to Pytchley Court Pharmacy for test, results will be sent to gp to review. He calls the pharmacy. Absolutely no knowledge of this "referral" 😑 and they've also had a software update that is no longer compatible with the machine. Brilliant 🙃 The pharmacist at pytchley thanks me when i go in next, for being so "chill" about the situation.  She says that they take a lot of shit when things go wrong and its nice when someone's understanding. I said "If I let every minor inconvenience get to me, id be a jibbering wreck by now! Some things cant be helped" 🤷🏻‍♀️

I go to a different pharmacy to collect his steroid and ask if they can do the test. They can. He needs to go in the next day to get hooked up to it. For the first 12 hours, 11am - 11pm, it goes off and takes his blood pressure every 30 mins, then from 11pm - 11am it goes off every hour. So that was fun for him all night. He said he shit himself every time it kicked in 😂 

When he took the machine back the next morning they printed his results off for him and sent a copy over to his doctors. The pharmacist looked concerned...the results were in red which meant they had to advise going to a&e. Hes like "yeah, thanks but no thanks" to that suggestion. That would be the 4th time he'd been sent there. To sit for hours, (blood presses rising because hes stressed out to fk being in there) has tests done, satisfactory results, get sent home again. He cant keep doing it with no different outcome or explanation 🫩 

So I get another gp appointment booked. He gets one for that afternoon. Gp is like 🤷🏻‍♀️ "maybe try some more water and make sure you get up slowly?" Right no bother. Thanks a million. In a bit........... like wtf is happening right now?? Everyone is saying - yeah that blood pressure is really low...and then doing nothing about it? 

It feels like since treatment started, nobody wants to take any responsibility for him. Oncology say its a gp issue. Gp says its A&E's problem. A&E do what they can. He gets sent home 😐🔫  So i'm straight onto his oncologists secretary via email, basically begging for help. His nurse Jo calls him. Thomas plays it all down as usual (lord give me strength) Some blood tests are arranged in preparation for his next oncology appointment on the 24th Feb. Fingers crossed they figure out wtf is going on because I am built like a roll up, and despite the weight loss...hes a lot bigger than me. And picking him up/stopping him falling off furniture...isn't easy! It would be nice to scratch off "fear of him blacking out" from  the never ending list of worries ✅️

Ok what else has February brought this gorgeous fella? Ahh yes...the hair. Thomas's beard (minus a Hitler 'tache) and a big portion of his hair fell out during treatment. I was upstairs the other day when I heard the clippers on downstairs. Not unusual, Thomas keeps his face tidy. I potter about and the clippers keep buzzing and the thought "those clippers have been on a while..." briefly comes into my head, but I get distracted with whatever im doing, then head down to the kitchen when I'm done. Where hes stood shaving his head. I literally gasp. "I look like I've got cancer now dont I?" he says, and hits me a look 😏 "Thomas, don't." 🤦🏻‍♀️ Its weird because he instantly suits it and i find myself falling in love with a new Toz I've not seen before. Toz Kemp 👨🏻‍🦲 (Already forgot what he looked like with hair 😂)

Food. He is back on track! Every day hes having something. Soggy weetabix, mash and gravy,  custard, soft puddings etc. The reduction in pain meds means although its manageable, its still really hard to swallow. But hes going for it through the pain 💪🏻 its absolutely incredible to see him eating. The tube still gets used for meds and when ive concocted a smoothie that he will categorically not consume orally...he has that through his tube too. But the shakes and soft foods are all going down the hatch and its the best feeling to see him making progress like this. 

There have been so many days/times over the last 4 months where we both felt this nightmare would never end. Especially Thomas. But he commented today, as he sat eating his weetabix, what a far cry these days are from him sleeping constantly and waking up being sick and just being in the depths of hell really. And it's true. He is coming back to himself with each day that passes. Its slow. Its gruelling. But hes fucking smashing it. Hes got a lot of strength and 2 stone in lost weight to regain, but that will come with eating more. He said tastes are hard. They all start tasting normal but then it changes mid meal to rotten again 😞 its going to be a long process of finding his new normals. Textures he hated before may be his new favourites. His favourite flavours may now be his worst. Its basically being a toddler again and learning what to eat. (Hope he hates beige food and loves colourful dinners, idst.) But hes doing it and that is incredible 🥰

February came with more heartache unfortunately. One of my dear friends had her world completely shattered with her beautiful little girl being diagnosed. I said to Thomas all the way through his journey how lucky we were that it was one of us and not the kids. Because its unfair beyond words, that children have to go through anything like this. So my heart has broken knowing they have such a rocky road ahead. They are an incredibly strong and united family though, and I know 100% cancer has met its match there too. Success rates are strong, just like Thomas's. And its weird to feel 'grateful' for your cancer but you do, especially when you hear what other poor families are going through with their prognosis 😔 I hope one day all our children live in a world with more good outcomes than bad when it comes to the dreaded C 💔  

Cancer is a dirty thief. It steals from you over and over again with no fucks given and often replaces what it stole with something much shitter. It takes your happiness and replaces it with fear, takes your freedom and gives you shackles, takes your ability to eat and gives you a feeding tube, takes your body weight and leaves you weaker, more vulnerable to other illness. It takes your ability to rest properly and replaces it with crippling anxiety and intrusive thoughts. It takes your ability to socialise and leaves you hanging on the edge of your life, looking in at it for something safe and familiar. But mark my words - WE ARE TAKING ALL OF OUR SHIT BACK!!!! The 4 stone we've lost between us - its coming back!! Having fun with the kids - reclaiming that shit!!! Being outdoors with epic views and top tier company - TAKING. IT. BACK!! We are reclaiming everything we've had taken from us and we WILL be living our lives again, with a whole new level of appreciation ✨️ 

Thomas met with his oncologist this week, Dr Rawther. Hes NOT happy with Tozs gp. And contacts them to let them know as much. Because they should have been sending thomas for cardiac investigations given hes had low BP and been blacking out for weeks and they've done nothing but pointlessly send him to a&e. That was 2 weeks ago now and hes still not heard ANYTHING from his practise. Absolute shitshow of a doctors tbh! So all of you acting superior because you're at great oakley medical centre - trust me, you aint no better off than us lakeside peasants! But blood pressure and set backs aside hes really happy with Thomas's recovery and feels he'd be even further along if he hadnt got unwell. Hes got to exercise his jaw every day so it doesnt fuse together 🤯 and Dr R has requested the feeding tube be removed 🎉🍻 Thomas cant wait to go swimming and get back out with the kids without that restricting him, so this is good news 👏🏻 albeit a little scary because that tube has been a lifeline when shit hit the fan 🥹

Its coming to the end of Feb now and i get up to get ready for my Art therapy class. Thomas comes down and hes instantly not himself in comparison to the last couple of weeks. I talk to him and realise hes crying. Fuck. Whats up? What's wrong? Are you ok? What's happened? - nothing. Radio silence but tears flooding his face. "Thomas?? What's going on, you're freaking me out!" Hes like "i dunno, I dunno what's going on" 😔 so i cancel my class and stay home to make sure hes ok. Hes not and so neither am I. It takes a phone call with his brother to realise that what hes feeling is withdrawal symptoms. Because GUESS WHO STOPPED TAKING HIS MORPHINE WITHOUT TAPERING DOWN??? 😭😭😭😭 and the week that followed was dreadful. Not at any point was he craving it or wanting to take any, it isnt addiction, its dependency and they're different apparently? 🤷🏻‍♀️ hes moaning like "knew this would happen, they assured me I wouldnt be on it long enough to be dependant (which they did) nobody told me id have to taper off...." - im like "you didnt tell anyone..." 👀 hes like "what?" I said - "you're saying nobody told you to taper off, but you didnt tell anyone you were stopping dead?" - hes like 🤨🤔 yeah thats a valid point 😂 but for anyone whos curious, dependency looks like - emotional breakdowns, sleeplessness, flu like symptoms, leg pains and headaches. Not a nice week but by day 6 he was feeling like himself again. 

So here we are in March! This month is scan month and April is results month. And not a single thing will be normal or ok for us until we hear that "all clear" result. So if you religious ones could pray for us and you non religious ones could hope to fuck for us, that would be most appreciated 🙏🏻🤞🏻❤️

Thomas, when you read this - I love you, so much. You have made me proud in ways I didnt know possible. Thank you for seeing me. For supporting me despite everything you're going through each day. I would choose this painful journey with you, over a pain free journey without you, a million times over. Thank you for being a total force. For putting yourself through literal hell to be here for us all. Thank you for wanting to fight. I will always be in your corner, ready to fight with you or for you. I cannot wait to see where this transformation takes us but I know that together, it'll be exactly where I want to be ❤️ lets get you NED my love 💓 

See ya'll again at the end of the month for, hopefully, some good news!!! 🙏🏻