Week 5 - The week he nearly threw the towel in 😔

Im disorganised today. Im still up at Dawn's crack and I know i need to get moving but motivation is evading me. Desperately need a shower and my hair is bogging but instead, I sit, as I do most mornings, drinking coffee, looking at different forums for any tips and advice I might have missed, and to see if i can get anything that might help with the healing process/pain/dry mouth/mucus/nausea 😭 

I order some Xylimelts for his dry mouth. Little minty things that stick inside your lip on your gum that help stimulate saliva. They can be used when sleeping too so they go straight in ma basket. Some L-Glutamine powder. Lots of people in America use a product called Healios, but its about £60-£80 a tub to buy. A lovely lady on one of the groups lets me know that they dont get Healios in Oz either, but the main ingredient is L-Glutamine, which can help to reduce the severity of mouth sores because it aids the healing process somehow. I figure it cant help to add a spoon of it to his salt and bicarb rinse, so thats ordered too. Also throw in some antibacterial rinse for the washing and then crack on with getting everyone ready. 

Thomas gets up and hes functioning better than I thought he would after a rough night. Hes still not managing much sleep at all and doctor has now given him Mirtazapine to try. I've been on Mirtazapine for years now and yes they make you sleep, but they're also an antidepressant - which he doesnt want. I make a note to get back onto the doctors. 

He tells me the pain is travelling up behind his ear now too, he cant open his mouth more than 1cm, 60% of his gums are completely white. The pain is getting so bad and its nothing short of dreadful seeing him like this. I call the Radio desk and ask if it would be possible to see Maz today instead of tomorrow. She calls back to say hes chocka and to call the EAB. Toz does not in fact, want to go to the EAB, but I try calling before we leave, just for some advise. No3 in the queue, 40 mins pass and im still no3 in the queue. I hang up as we have to leave for Northampton, so its perfect timing when Poppy calls to check in and see how Thomas is. I let her know whats occurring and she says to leave it with her. She might be able to sort a quick check over at the EAB while we are there. Thomas is reluctant but I reason with him - "just a check over so that they can maybe give you something different for the pain?"(Oramorph still doing nothing 😭🔫) hes like "a quick check but im not being admitted for hours, fuck that" - I'll take that. 

Thomas gets his radiotherapy and Maz clocks us in the waiting room. You ok? He asks. No not really, blah blah blah. Hes like im going to give you some antibiotics just in case there's some kind of infection going on. He looks at Tozs gums too. Use the antibiotics and we can decide on a better plan tomorrow. "Will you take the antibiotics?" Thomas nods. I laugh because what do you mean you already know him well enough to confirm if he has any intention on taking it before they waste their time prescribing it 😂 

Poppy calls back to say she's spoken to Maz but he's beaten her to getting to us. She confirms if thomas is happy with the plan. He is. The rest of the day is pretty difficult and the night that follows is no better. 

Im not sure if it was Monday or Tuesday this week, (every day is a bit like groundhog day at the moment) but whichever day it was, Thomas made the call that it was now too unbearable to eat 😪 A decision i know he did not decide himself, but more one that was physically made for him. He is battling on with the sips of water but it looks like he's swallowing broken glass every time he does. This is a man who was adamant he wouldnt use it at all. So I know it has to be extremely bad for this to be his decision. 

And so began his journey with the feeding tube. He needs 8 x 125ml shakes a day to get 2400 calories. So we trial it out and see if he tolerates it. First its 60ml of water to flush, followed by 4 x 60ml syringes full of shake, then another 60ml to flush. 6 syringes that I have to slowly and carefully feed into him, so that he isnt sick. (Because projectile vomiting can happen if you do it too quickly apparently.) He gets through it and keeps it down. Success  ✅️ 

I hate that he cant eat and enjoy food any more. I know it won't be forever but its just another thing to be sad about on top of all the other horrible stuff hes going through. It makes me feel so guilty eating anything in front of him now, so I try to wait until hes sleeping or lying down upstairs. And when I tell you, this sadist has sent me more food videos this week than he has in 6 years 🫠 its rare he picks up his phone at all just now, but when he does he's mostly watching people making 3 minute meals. It's like sheer torture ffs, but one thing is 100% for sure - I will make him EVERY SINGLE THING HE SENT ME, as soon as he is able for it ❤️

Tuesday morning he gets up and despite the fact that he looks completely defeated, hes up and ready. Hes quiet, so I read the room and keep talk to a minimum. Thomas is very sicky in the mornings and if hes physically sick this tends to be the time it happens most. Maybe due to all the mucus gathering as he sleeps but even when he could drink the shakes, if he did it first thing, they'd usually come back up. I'm only 2 syringes deep when he starts being sick 😫 hes also got a touch of sickness from the other end so I'm now inwardly freaking that this is an infection and that he also cant afford to lose any of the nutrients going in 😭 he had to admit defeat on breakfast feeds and we will try again when we get home.

We set off. This isnt the worst morning he's had from an outsiders perspective, so it comes completely out of the blue when halfway there he tells me that hes going to tell Maz that if there's nothing more they can do for the pain then hes done. I said well you cant be done done? And with a frighteningly serious tone he says "Im fucking done Lauren, I can't take any more of this, I'm in pain ALL the time, it's constant, 24 hours a day, I'm done" 😔 I can't speak. I am swallowing down the lump in my throat but there's fuck all I can do about the tears. We both quietly cry for a fair bit of the journey. Nothing can ever prepare you for seeing someone you love suffer like this. I just want to take it all away and I can't. But the thought of him giving up? Now?? I can't even entertain the idea so I hope things do get sorted because I know he meant every word 💔

Im now an emotional car crash because I know how bad things are. Like I knew they were bad, I'm here watching every shitty  piece unfold, but I didn't know things were 'ready to give it up' bad. We see Jen in the waiting room and she knows by looking at us things aren't good. Maz calls him in and we get in the room and sit down. 

"What's going on Thomas" - he asks with genuine concern. Thomas breaks down. Says he cant live with the pain any longer. I'm sat behind him a little as his chairs been pulled forwards next to a machine on his right and im glad he cant see me because im not being very strong at the moment. It's so difficult to hear him like this but im glad he's making it clear how much he's struggling. Hes very good at replying "yeah I'm ok" or "not too bad" even though thats not actually the case, so I'm proud of him for vocalising the severity of it all. 

Maz creates a new pain plan. Slow release morphine tablets to be used twice a day together with paracetamol and oramorph. A new antacid oxetacaine medicine which numbs the mouth and throat. And to just keep layering up the relief really so he's not getting to a point where it's too late for anything to be effective. The machine he was sat next to is the red light therapy. The machine has been broken but i had been reading up on it and was going to ask Maz about it today when he beat me to it! Thomas will get this 3 times a week now to help with his sores. He also informs Thomas that if he hasn't improved by Thursday, they will be admitting him 😔 not what either of us wanted to hear but understandable given the state hes in. 

Jen gives us more support on this tough day. Advises what to do going forward with the tube and again, stresses that he needs to keep the weight on now. 8 shakes a day - no excuses. Hes only lost a small amount of weight this week so I'm thrilled. It's a loss but not a huge loss like all the previous weeks 💪🏻

We get home and he is so reluctant to try the new mouthwash. After what feels like hours he comes in and does it. Im stood next to him waiting for the "its shit, doesnt help, pointless, makes me worse" response and what comes out his mouth shocks me. Well, what he does with it does... He starts by saying - omg it's instant. Then opens his mouth - wide and sticks out his tongue 😭 i break down. As if that's not enough he picks up his water bottles and chugs 3 or 4 gulps down. Im sobbing at this point. This is HUGE. Thomas hasn't been able to open his mouth wider than a finger width in weeks, swallowing is 10/10 pain and tiny sips are all hes managed. This relief may be temporary but god does it feel good seeing him moving his mouth and being genuinely pleased about it. Little wins that are big wins are what make the days go by ❤️

Wednesday - what a difference. Don't know if it's the meds or just another part of the roller coaster but hes more coherent and isnt wincing as much today. Still spending most of his day sleeping but sleep = short lived peace from pain and healing so its the best scenario all round. We manage some TV together on the couch tonight. The Diddler documentary. (I fall asleep as I always do and will spend the next 2 nights by myself trying to rewatch the last episode without crashing out)

Thursday - the day he was potentially being admitted. But hes pulled it back and is back on top of pain management. The rads still fuck him up after a good few hours and he needs solid rest for a bit but its crazy how different he is after a day. No hozzy for you Tozzy 🥹❤️

My dad calls me about half 2. Straight away his voice is off. He's stuttering and upset and I know hes about to deliver bad news. My uncle Adam has had a major stroke and there's nothing they can do for him. I crouch down against the kitchen cupboards and just cry. Adam was a great guy, so quiet and humble but great craic and a real family man. I know he was my Aunty Bridget and Mollys world, so my heart is broken for them. This year is ruining so many people, i can barely cope with it just now. It was shit enough knowing our Christmas was going to be hard but knowing people i love and care about are also going into Christmas with broken hearts now, is the worst.

Rip Uncle Adam. You will be remembered and held in high regards always ❤️ 

Friday - week 5 done. Everyone gets excited for us knowing treatment is nearly over but im so aware thats when things will be the worst. Im dreading it. At least every day in hospital, i have the oncology squad at my fingertips for help and advice. Im so worried about being his primary carer. Not worried about doing it in general, more worried about doing it right. However, its a job I will gladly do with pride and love until the end of time if necessary, but its still daunting 🥹

Thomas has dealt with so much stress over the last few months that someone in his situation should never have to deal with on top of what hes going through. But unfortunately some people dont think further than themselves. Im going to do a blog about it all and the kids between this one and next weeks because im not holding back no more. I could share screenshots of messages this man has received that would blow your minds. Cruel, thoughtless, pressured, callous, selfish. I could go on but ill save it for my blog. If it paints anyone in a bad light - GOOD. Because im sick of both of us being vilified for 6 years and not defending ourselves. Im blogging honestly and I come with receipts. My friends will tell you that about me. If I'm coming for you, you better fucking believe I have a back catalogue of messages, pictures, emails, videos and FACTS to reinforce what I'm saying. I won't come for you until I have it all in files and then - I'll use the truth, my intelligence and a relentless mindset to do what I set out to. And in this case its show everyone just how vile some folks are. Not just a bit thoughtless, sheer and utter bastard behaviour. Watch this space!

The boys come on Saturday. Hattie is ecstatic to see them as always. They settle in and the usual chaos commences. Thomas is battling with his body to be awake and present and its so sad to see. I want to tell him to go lie down but I know he won't because the boys are here. Watching him struggle through is hard and then to make it worse, hes up all through the night with his youngest son who keeps waking up and crying for him. It must be torturous but hes that guy. He'll suffer and pay for it later but he shouldn't have to, not right now. He's a fantastic dad, anyone who knows him knows this. But he shouldn't be expected to do anything other than survive right now. He battles on and when the boys have all gone home hes looking extra exhausted. Get to bed Sir, immediately 😴 

Another week done. He may only have 1 week left of treatment but im looking at 4 weeks until recovery is possible. Like 4 more weeks of hell and anything less than that will be a brucey bonus 🙏

Again, I'm so proud of him. Whilst his cancer is a "good one" to have, I cannot stress enough how brutal the treatment is. Radiotherapy is harsh, but on your neck is just plain savage. Skin on the outside still looking good though 🙏 Child's farm Oatderm and Flamigel for the win 🏆 

Last week of treatment next week. Let's fucking do this baby 💪🏻