Week 6 - The Last week of Treatment 🔔

I was going to do another run through of each day this week like previous weeks but I A. Forgot to take notes this week. And B Can't fucking remember what happened and when. So ill just summarise best I can. 

The final countdown to treatment finishing! 

I remember looking at Thomas's appointment sheet 6 weeks ago and it was 3 double-sided A4 pages, stapled together with row after row of dates and times and thinking - "this is so much" 😩 it felt like an eternity away. Treatment ending, as monumental as it is, is not the joyous occasion it should be. 

The main man has got through this week like a champion given how bad things are. Hes been on his knees at times, completely defeated and hopeless but he pulls it back each time. 

Hes completely reliant on his feeding tube now, even for medicine as the tablets get stuck in his throat, which is hellishly swollen and agony to swallow. I feel like all we do all day is syringe him full of something. Paracetamol at 8, 12, 4, 8 and 12. Oramorph 2 hourly.  8 shakes to get in over the day. Plus there's times where he needs laxido but the liquid in those doesn't count towards his fluids so its like 6 extra syringes each time hes on laxido too. Its pretty time consuming, so by the time we've got through one regime, its time for another medicine or feed. Its still a bittersweet task for me. I feel proud knowing im getting all the stuff that's keeping him going inside of him. Every tedious ml is pure love. But he hates it. And I know it. So i have to try not to think about that part and be mindful of the necessity of it. He sits with his eyes closed each time, teeth gritted in pain, and it rips my heart out seeing him like this.

His skin is now starting to appear "grazed" on the outside, like when you skin your knee or get a burn on your arm off the slides at cheeky monkeys but its not quite deep enough for it to bleed 😣 We need to monitor this now, as it will need looked at and dressed if it starts to bleed or weeps. Given that we seen some poor bloke with bandages all over his neck from about 3 weeks in, hes done well to get to now with no external issues. 

Mucus. Absolutely horrendous. He has to have a bowl next to him at all times to spit into. It is so thick and gloopy, it literally gags and chokes him. This is from the damage to his saliva glands from the radiotherapy. The mucus also gathers in his stomach overnight causing nausea most mornings. The mouth rinse of salt, bicarb and L-Glutamine helps, but its really short lived. I constantly make one up so its on hand when he needs it. I've actually seen people on the cancer forums who take a bottle of it wherever they go, even months after treatment, for relief at any time. Natural remedies are always the best. I've even had a swally to see what its like and it really does "clean up" your mouth. My friend has started doing it for her sinusitis and its helping her too. Hopefully his saliva glads are one of the first things to start regenerating and doing their thing again because this mucus production is the pits for him 😩

Watching the person you love go through this is nothing short of soul destroying. I want to take it all away from him but I cant. I can't do a single thing other than medicate and feed him which doesn't feel enough. Knowing he's in agony all the time weighs so heavy on my heart. 

And I know ive got to hold it together. Because im sailing this ship alone just now and if I crumble, we are fucked. 

That's why im fucking terrified of getting sick. Super Flu season as well, sound. It was a constant fear during treatment, so im glad I dodged any lergy. But I need to be pretty close to him to do all his medication and feeds so I really cannot afford to get sick until hes eating again. Pray for us 🙏🏻

We gave Thomas's oncology care team some thank you gifts this week. Nothing much, just some cards with a small token of our appreciation and a reminder of how fucking incredible they all are. From Billy and Yvonne on the Radiotherapy desk, to all the team behind the scenes, Maz, Poppy his beautiful macmillan nurse, and Jo and Hayley, Emma and Jackie the chemo nurses - pretty much every single person we encountered over the last 6 weeks at Northampton General have been salt of the earth and made a really shit time so much more bearable. Never has there been a time where I felt he wasnt getting the care he should have been. I've not had to fight for him or kick up a fuss because there was never a moment I needed to. They have all been ON IT, to ensure that Thomas got through this the best he could. We are eternally grateful to each one of them ❤️🙏🏻

Friday in the waiting room. It doesnt feel real that its finally the last day we will be making the 50 mile round trip. Thomas has said hes not ringing the bell to mark the end of treatment all the way through. And i've been saying he has to... But im also not going to pressure him into doing it for my own sake, this is his journey after all. So I make sure he knows it doesn't matter when we are sat in the waiting room. "You really dont need to ring the bell if you dont want to babe, it honestly doesn't matter to me at all". He side glances me and mutters "ill do it for you" 🥹🥰 So i reposition and wait for him to come out so I can get a picture. The emotion really hits home and I can't stop grinning. Thomas can't hold it in and the tears are rolling. We leave and im ecstatic. So ecstatic I leave his water bottle on the desk. He looks at me and says "I ain't going back in there for shit!" 😭 so i run back in and grab it. Can't blame him really 🥲

I was going to do a warts and all rant of a blog this week. But the rational part of my brain stepped in, just in time. I wrote the blog and sent it to one friend. Just one. And that felt enough. I will say one thing though, this man doesn't deserve to be told hes letting his kids down, that if he was that bad he'd surely WANT to spend time with his kids, (like he chose cancer to deliberately avoid his responsibility as a father) that the less the kids see him the more they dont want to. I could go on, in detail, outlining some horrible horrible messages but im not going to. I won't lower myself. (Who am I kidding, yes the fuck I would 😂😂😂 still might 🤷🏻‍♀️) but im glad I will never ever be the calibre of person who is so self-absorbed and callous, that I give a man trying to survive the most brutal of cancer treatments, a hard time.  

I will still do an honest post about how its been with the kids and cancer, but for now im going to keep it informative and accurate for Thomas's friends and family to keep up with where hes at. From a care-givers perspective. (See, I can shut my mouth sometimes 🤐)

So thats his treatment done. 30 solid days of radiotherapy and 2 lots of cisplatin. And now, its time to brace ourselves. Because the warnings have been clear from the start - this is going to be the worst of it. (How the actual fuck thats possible is beyond me because what do you mean the worst pain someone's ever experienced in their life is still going to get worse 😣)

We get home and our dream team have made a "Well done Daddy" picture for hattie to decorate and when we walk in shes stood holding it and mum and Claire pop a party popper each 🎉 This emotionally tips us both over the edge and Thomas bails upstairs to compose himself. These 2 women have been our saviours. We didn't have to worry about a moments childcare, which I cant even describe how much stress that removed. Knowing she was here at home and having fun and being loved while her mummy and daddy were awol for so long, was the comfort I needed. They had as much of a strict schedule as we did and not once did they let us down. I am so fucking blessed to call them my mum and sister. 

So yes, its phenomenal that hes made it here. Its incredible that the 6 weeks are over. But for Thomas there is still a long road ahead. Speech, swallowing, eating, strength, weight gain, a new normal to adapt to. Side effects that could be lasting. And then there's the wait for his next scan to see how successful this has all been. I won't even entertain any other thought than him being cancer free - NED (No Evidence of Disease.) Scanxiety has re-entered the building though 🫩 

For now however, we just need to manage his pain best we can. Theres no avoiding it, its going be bad no matter what but managing it and keeping at a minimum is my only focus. That and trying to get him up to 10 shakes a day 💪🏻 

Oh and I finally got the tree up 🥹🎄 Hatties reaction was worth the broken back and hip displacement but I don't feel one bit christmassy. Its already such a lonely journey, I know im going to feel it even harder over the festivities. But I'm reminding myself daily that this ain't forever. And if we want plenty more christmas's to enjoy, we have to sacrifice one. And when I say lonely, im not alone. I've got a wonderful support network. It just feels lonely. We haven't been anywhere other than the hospital in 6 weeks (bar the night i went to the comedy gig on week 2 or 3) visitors aren't a thing at the moment and Thomas is either sleeping or in too much pain to talk. The girls are great company but you need adult company/conversation to keep sane! Thank god for GCs and video calls ❤️

Thanks once again for reading. I appreciate it so much and all the messages of support you have sent us mean the world. Love to you all.xx

Next week when I post it will be 7 days post treatment which will mean he's halfway through the worst of it 💪🏻 roll on the turnaround ❤️❤️❤️