Week 3 (Part Two) - Tuesday Highs to Weekend Lows

Tuesday. Up and at em. Everything is ready to go. My mum arrives and I have a coffee with her before I wake Thomas. Today he has his usual blast of radio lined up, then he has an unscheduled meeting with his Oncology doctor - Dr Rawther because of yesterday's situation. (Usually, he would just have met with him at the beginning and end of treatment.) And then its 2 scheduled meetings with Maz and Jen the Dietician. 

I go to wake him and he's awake, but the difference from yesterday is instantly noticeable. 

"How you feeling?" (Always feel a twat asking this but it's just so I can try and support him in the right way at that given time)

"Alright" he says with what almost looks like a smile 🥹 "...my mouth was sore through the night though". 

His mouth is beginning to feel the brunt of treatment now. Hes got ulcers, sores, his gums are red and swollen and its hurting to swallow. Up to now he's only had paracetamol for pain relief but even they're becoming hard to swallow. Literally. 

Thomas gets up, has a shower, comes down to a cup of tea and some soggy branflakes, he has a banana and actually says the words "This feels like a normal morning" 🥹 I could literally cry with happiness. If he had chemo yesterday it would be tears, reluctance to leave, sunglasses and a lot of silence. I know I can be somewhat dramatic, but it feels like he's come back to life a bit this morning.

I'll drive! He says. Im buzzing. This normality is everything for him. Given last Tuesday he was curled up in a ball on the back seat, violently being sick pretty much all the way to hospital - driving us and chatting and not wearing his sunglasses is the best feeling 🥰

We get to NGH and Radio is done really quickly. Maz comes to see him and tells us that Dr Rawther and himself will meet Thomas together so he doesn't need 2 separate appointments. "I still want to discuss the chemo..." says Thomas. "Don't worry, ive given Dr Rawther the heads up" he replied. (Snitches get stitches and end up in ditches Maz!! 😂 which is rich coming from me - The Super Snitch, who grasses Toz up at every opportunity I get when he starts straying from medication or refusing things that we have been told are beneficial or necessary.)

Dr Rawther is also brilliant. He agrees that the syncopes are down to a stress response. Thomas's body takes so much intrusion then says "nah fuck this" and starts shutting down all its servers in a fight or flight response. He also lets Thomas know hes cancelled his 4th chemo. Then, Thomas can assess it all and decide if he goes ahead with 5 and 6. But he MUST complete Radiotherapy. Thomas is happy with this and weirdly so am I. Because ive seen an overnight difference. Yes, hes still very poorly but hes improved on the last 2 weeks overnight. 

When you experience something first hand it does give you a different outlook on things. I know chemo is detrimental to some people. But for Thomas, it seems to be doing more harm than good. Hes not able for nothing. 

Thomas is an outdoors guy. He walks for hours every day to help with his mental health and to help with his pain (He had been diagnosed with degenerative disc disease prior to his cancer diagnosis. 2 MRIs showed some of his discs are bulging and some have crumbled away, leaving sharp edges which press on nerves and cause pain, mostly down one side of his body) And the last 2 weeks he has been in his bed 75% of the time that hes been at home. Both weeks struggling with nausea, dizziness, angry outburts, headaches, fuzziness, intrusive thoughts, sensitivity to light, little to no conversation and uncontrollable emotional breakdowns. Its all too unmanageable and the only place hes been fit for is his bed. The only time hes dragged himself up is to see the boys, but even then hes had to go back to bed after a short space of time. 

We meet Jen the Dietician after Maz and Dr Rawther and talk about dogs, hiking and death before pulling the conversation back to diet 😂 She orders thomas some fibre sachets to try. Advises him to keep up with the laxido and we shall see her next week. (Unfortunately we have a lot to discuss next week because since this meeting the nutritional side has declined some but ill get to that shortly.)

Today was the best day we've had in 2 weeks. Hes almost like himself again, its wild. Thats not to say the mouth situation isnt vamping up some because it really is. And his beard is falling out rapidly. We first noticed some little white flecks on his jumper on monday but there was a lot going on that day 👀We soon realised it was his beard hair. They said it might not happen, but it has. Thomas, luckily, is a man who looks good with or without a beard, and beardless Thomas was the man I first fell in love with, so there's going to be no shocks for when it falls out completely. Saves him shaving I guess 🥹

Wednesday is another no-nonsense, in and out job. Bosh! Love that for him. His mouth is becoming really troublesome though. So today he is prescribed some of the good shit. Oramorph. (At this point i thought 'great! at least that'll be better than paracetamol' - but also at this point i didnt think he would have any aversion to taking it 🙄) 

Tonight I'm meant to be off to see a comedian called Kyla Cobbler. My bff bought me and our other bff tickets for our birthdays and as the date draws closer I'm inwardly freaking out. I can't go! I can't go have a good time while my man's at home in a world of physical and mental hell. I tell Thomas I'm not going. "Yes, you are" is his reply. I share my worries and concerns. 

Me - "What if something happens?" 

Him - "Nothing's going to happen 🙄"

"You don't know that, I wouldn't be able to enjoy myself if I'm just there worrying"

"Ok I'll ask Dale or Sarah if they will come sit with me, would that help?"

"Yes, if I know someone's here with you I'll be fine."

So Dale came to sit with Thomas and I was able to go to Leicester with Lynsey & Sinead to unwind for the evening. The show was incredible and Kyla had all 3 of us in kinks. I needed tonight more than I realised. I'm home for half 10. Thomas and Dale are chilling watching TV and, as he predicted, "nothing happened" 🙄😂 Dale goes home, Thomas looks shattered so he heads to bed and I stay up and get everything ready for our little Hatsby turning 3 tomorrow 🥹 

Thursday - Hattie's Birthday. Thomas's appointment is at 12:30 today so we have until 11am with her then the dream team takes over until we get back. It's breaking my heart how different everything is. We would normally have a cake sorted, have everyone round, I would do one of my birthday buffets, there would be an abundance of balloons and themed wrapping paper. But instead it's all rushed and I have to rely on Amazon, who didn't deliver all her stuff on time. And at near 12am when I went to wrap her presents, I realised I hadnt got wrapping paper or a gift bag. So shes 2 gifts down, no cake, and her presents are now getting wrapped in Christmas Tree paper. Im crying wrapping it. I feel like the worst mum but i know it cant be helped. (I have made a vow to go hard next year on everything that was shit this year because of cancer 💔)

She wakes up and couldn't give a shiny shite its her birthday 😂 not in a bad way - shes just very much like her dad in the sense that she doesn't show her excitement in the same squealy, hand-clappy fashion that I do 😄 

She doesnt notice the wrapping-paper (my mate Alison said if she did i was to sign her up to MI5 😂) and shes over the moon with her humble little pile of gifts 🥹 its hard leaving her but its only a few hours and the make-up set we got her will keep her occupied for at least one of those hours. (Granny and Aunty Claire are going to look sooo pretty by the time we get back 😂😂)

We get the hospital out the way and Toz's mouth is his biggest problem still. (He's had no anti-sickness at all this week.) We stop off at Asda so I can run in and grab Hattie a cake. Thomas waits in the car and when I get back he's really upset but won't say why. He eventually opens up on the way home. He was watching people just going about their lives, seemingly carefree and normal. And it hits him like a ton of bricks that this isn't life for him anymore, not for a while anyway. I feel my heart breaking again. It's easy for me to remind him that it won't be forever and he's already halfway etc but that means shit when your life's completely upside down. He can't do the school runs, he can't go to football, can't do the shopping, can't go out walking, going to the shops is too much, he can't even commit to having the boys on his usual days because he's so unwell. Cancer has already taken so much from him. He said he can't remember what his old life feels like anymore and its only been 3 weeks 😞 (please let the next couple of months fly by 🙏🏼)

We both dry our eyes, shake if off and get back to Hats. She'd usually have all her brothers and sisters, friends and family there, eating the party food and playing with her. But its just another day in comparison to what usually happens. She doesn't know this, but i do. We do her cake at 7pm and even thats upsetting me because not everyone is here. Cancer - you are a ruthless c**t.

Its a bad night for pain. He actually has some oramorph and it does help but it also gives him a dry mouth which aint great when you've a sore mouth anyway. He says the next day hes not having the oramorph again as he feels shitty after having it. Fml. First guy in history to get the good stuff and be like nah sod that ill just have paracetamol 😳 its good to have it there though. Just in case🙏🏼 

Friday - the last day of week 3. Half way. Thank fuck. This man deserves a rest! Hospital goes according to plan. We are home at a reasonable hour and have 2 days to rest at home with the kids. The boys are coming to stay tonight and Thomas, despite the pain and the nausea that's crept up from nowhere again, is up and present and I made a little note in my diary that says 5:45pm "Singing Golden" 🥹 Firstly - thats his jam. He loves the Demon Hunters and who wouldn't? Best love story since Romeo and Juliet! Hes just pottering in the kitchen singing to himself but that simply wouldnt of happened last week, or the week before. There was no little moments of joy like this. Again, the no chemo situation seems to be helping him cope much better this week. So hearing him singing that under his breath is like someone handed me a winning lottery ticket. All too good to be true? Yeah of course it fucking is 😭🔫

Saturday- Instantly not good. A bad night with his mouth. Not much sleep. Fuzzy headed.  Hes quiet and subdued but gets up and trys to get on with normal things. I can see hes struggling and when he does too much it shows all over his face. He has to keep going to lie down for a bit. I think sometimes because hes exhausted, other times he just needs to be by himself to let out some emotion. He also gets lightheaded and a bit woozy at times too. But he knows that I support whatever he needs to do. I expect nothing of Thomas right now. All he needs to do is get through each day whatever way he needs to. If thats a whole day in bed, thats what he will do. If its telling me hes going for a 10 minute walk then disappearing for a fking hour 👀🙄 (god give me strength 😭🔫) then I (through gritted teeth) support that. (Although, when he told me that at one point his vision went 'a bit blurry' I could have passed out... which is exactly what he was clearly a hairs breadth away from doing! 😑) 

Hes not eaten much today because of how crappy hes feeling and that worries me as hes already lost 1.2 stone in the first half of treatment. He's been doing really good with his eating up to now, but today hes hit a bit of a wall. Food tastes rank and its also physically harder to swallow. Not just because of the pain, but because of the swelling and tightening of his jaw. Then the more he overthinks it, the harder it becomes. So its both a physical and psychological hurdle to get over. 

My mum had made him a pot of homemade soup, that he would usually smash bowls of. We sit down to have a bowl and I can see within the first couple of spoons he's struggling. I ask if he's ok. He nods. I'm trying to carry on eating mine but its like swallowing cement. I feel guilty putting it in my mouth when he's sat there hungry and unable to eat. Yet I also know, if I stop eating, that'll upset him because he'll think he's causing me not to eat. I'm sitting opposite him, fighting the tears back, moving the soup around as long as possible without it being weird, then putting some in my mouth. He manages about 3 spoons and says he can't do it. I ask "ok, is it the taste? Texture? Feeling sick? Hes like "I just can't do it, i dunno what it is, its almost psychological, I just cant eat it." He puts it back in the pot and says - "I'm just going to have a little lie down." - "Take as long as you need" i reply.  

The minute hes out of view im gone. Over the years I've mastered the art of silent sobbing (dont fucking ask, ill bring it up with the trauma team, ok? 🙄) So I'm completely falling apart like a mime at the kitchen table because i dont want him to hear and to put any additional stress on him, or Hattie to hear who's currently oblivious in the living room. My soup also goes back in the pot and between entertaining Hats and checking on Thomas, i rabidly clean the downstairs with disinfectant for the rest of the evening so that I dont have time to sit and think (cry)🤙🏻

Sunday. Im up before 7. First things first - Coffee ✔️ then I get straight to ironing the weeks uniforms for Bets and Lola. Iron something for me and Thomas for Monday. Get the bags ready. Have another coffee. Check on Toz and Hats. Neither awake. More coffee? 👀 More cleaning. Bit of blogging. Bit of crying. Bit more housework. Hats and Toz wake up about 9am 🥰

He's a little brighter this morning. I know how quickly that can change but we roll with the good while its here and this shit has already given us a better appreciation for the good minutes/moments when they happen. He makes a conscious effort to eat better today. For breakfast he has a bowl of ready brek, then another bowl straight after with mashed banana through it. He has a couple of his 125ml shakes, they have 300 calories in each bottle. Some soup and soggy bread. (not mama kazs though 🥺 just a tin of chicken) And some jam sponge and custard. Custard seems to be the winner at the minute. It still tastes like custard so we've stocked up on a few tins of that. Cannot wait for the day he can have a big dinner with all his favourite foods again 🥹

If he does have more bad days where he cant eat, he's going to have to start considering using his feeding tube so that he gets the nutrients he needs to get him through his treatment. But the very thought of using it has been enough to spur on eating so far. And hes stubborn AF in case you dont know that about him. (I always say hes got that ODD and so has his daughter because the way they both go against the grain out of sheer defiance - cannot be a coincidence.) 

It's a shock to the system when the whole world as you know it is turned upside down. Its been such a challenge for him already but hes fuckin smashing it. While theres definitely some dark moments, theres also plenty of "I've got this" moments too. It also probably helps that Thomas is morbidly (or peacefully?) at one with death (which fucking FREAKS.ME.OUT) His view is that we all die and when its his time its his time, no point getting upset about it 🤷🏻‍♀️ (Well, EXCUSE ME SIR, but its not all about you and your apathetic view of death! 😂 The rest of us kind of want you here for another 30 years AT LEAST!!) But that whole being at ease with mortality means he's not worrying about dying at all, and that means he can focus on getting through treatment without the crippling fear that im currently supressing like a bitch 😂 He just hates how shit he feels more than anything and not being able to do the things he could only a few months ago. I couldn't be prouder of him though. If he handles the next month like he has the last 3 weeks then it'll be ok. Not good. Not nice. Fucking horrendous more than likely. But it'll still be ok. Because hes a motherfucking G. And ill make sure of it ❤️

No chemo again tomorrow. Let's see what week 4 has in store... 🙏🏼🤞🏼🍀 (*Gives bombastic side eye to the Universe* Girl... dont even think about it...)