January Blues. Out of the Oven - But still cooking.

A very belated Merry Christmas and a Happy New Year to you all!! I hope you all had a great time over the festive period and that 2026 is bringing you all happiness and good health so far ❤️

So what's been crack-a-lackin since the big man rang the bell on Dec 12th? Well, as i write this, not very much in terms of anything that isn't tainted by cancer! It feels like we haven't left this house in years. And whilst that is difficult, it's also kept Thomas safe from illness. Not mixing has meant missing some special occasions and missing people in general, but this time of life has been all about making the right choices to keep Thomas safe. The last thing he needs on top of the trauma hes going through is a dose of the super Flu! So we've not seen hardly anyone. Quick visits from family to see the kids on Christmas day but it was the weirdest. Our house is usually chaos but it was subdued and calm this year. I can't wait to blast Christmas tunes next year and flap over the dinner and be up to my eyes in, well, everything and everyone we missed this year tbh.

The girls woke up here with us, then their dad came and picked them up after they'd seen my mum and dad and that was them off until the 28th. The boys came down christmas morning and stayed until early afternoon, when I took them home for dinner. The parts where the kids were here were the best, and they were all so genuinely grateful for their gifts 🎁 

Thomas battled with his body to be awake and present and because of the visits etc we slacked on the regime of meds/feeds. And boy did he suffer for it 😭 Thomas will usually take himself off for a lie down or a little sleep when it gets bad throughout the day, but he just pushed through on Christmas day until everyone had been. We've been in a great routine with syringes and it makes all the difference for how he copes. Things go from bad to terrible so quickly for him if he doesnt have his medication on time. But we were both distracted and there was late doses and missed doses and the night that followed was a bad one. He made it until about 8pm Christmas night, then had to go to bed. He did really well to get through the day. Its painful for him to talk and he still cant open his mouth more than 1cm, so making the effort to have conversations must have taken its toll as well. Im glad he was well enough to be amongst it all, but it does fucking suck that he cant really enjoy any of it. 

The Sunday after Christmas he had an unexpected good morning. Good in the sense that he had slept quite well, his pain wasn't excruciating and he hadnt over produced mucus through the night. (His bowl is usually half full of it come morning and there was only 2 or 3 little foamy spits.) Then!!! He just nonchalantly drank some water 🤯 And some more. And throughout the day had managed 2 small water bottles via the mouth! Still having his meds and shakes via the tube but wtf! Drinking from absolutely nowhere 🥹 could this be the turn around? Is the healing kicking in? Turns out - no. Because whatever fluke event this was, he was back in pain by the evening and hasnt been able to do it again since 😩 

There's not a lot of conversing going on just now but when we do, its still so hard to hear him so disheartened. He truly believed he'd be better by Christmas. He even said he envisioned having a small dinner 😔 (i knew that wouldn't be the case, as i know too fkin much about the endless list of shit hes going through, but Thomas hasnt wanted to know so its still coming out the blue for him) He said last night it just doesn't feel like there's an end in sight 😢 no light at the end of the tunnel. You can remind him 1000 times there will be soon, but hes just so done with it all. Hes lost any positive thought patterns. I need him to start feeling a bit better so that he can see some progress because I think that will reignite the hope inside him 🙏🏻

I've read up so much on Thomas's cancer. (despite the ludicrous assumption that because i dont read unproven, dangerous charlatans advice - that i'm not looking into anything worthwhile 🙄) I've interacted with so many people in the head and neck cancer club (the club nobody asked to be a part of) gaining their first hand tips, advice and experiences. So that I can reassure him and share their knowledge. Thomas convinces himself that the effects of the treatment are caused by something else. I'll give you an example. He said out of the blue yesterday - "Im going to try and start eating food tomorrow" Im a bit taken back like "ok...well thats great... are you sure you're ready?" He said "no, but I need to because the milkshakes are making the mucus bad" 😐 I said "I'm not sure thats right, I think the radiation damage to your saliva glands is why you're over producing the mucus." He says "Yeah but because they're really thick, I think its making it worse" 😑 I'm like "Look, im all in for the trying to eat, I think thats great. But the shakes aren't causing the mucus, thats a common, almost definitive side effect from treatment babe." He hits me a look, but he can look all he wants, the shakes are keeping him alive and its not just about weight loss, its NEEDING the nutrients to heal. To have the energy to fight through the pain. Its tedious, its time consuming and I get it. But its also just as important as his medication right now and hes started trying to make excuses not to have the full amount. "Its too late, they give me heartburn" "its too early, i feel sick" "im not ready for shakes ill just have my meds" 😭🔫 what then becomes difficult, is cramming 8 bottles in over 6 hours because he doesn't want them too late at night. 1 bottle is 2 syringes so I try to do 3 bottles in the morning, 3 in the afternoon and 2 early evening. Its hard enough keeping up as it is, the schedule makes life easier and I notice the difference in him when we do everything timed to the hour. I know i piss him off, but im not going to feel guilty for wanting this to be as easy for him as possible. 

Today's been a really shit day. One of the worst, tbh and its new years fkin day 🫩 He gets up about 11 and says hes had the worst night yet. He sat and cried for hours with the pain. I'm gutted things are still this bad for him. (He can have morphine through the night if its bad but he's still adamant the morphine is shit by itself, so he doesn't have it. And he cant have any more paracetamol than hes already having so he just had to lie and suffer.) Hes not been taking his zomorph until afternoon, when hes been up and had his first pain meds. Which means he cant have it again for 12 hours, so its late late before he can take that again. It feels like everything has shifted into a disorganised mess this week and I can see its effecting him. He only had 6 shakes yesterday so hes had less nutrition than he should. His routine is starting later in the day and it feels like thats a big part of the issue. 

I'm annoyed with him at this point, and ive not felt like this throughout this whole journey. Im trying so hard. To keep him going and keep the house going, and keep the kids going and keep myself going and its not easy. So my usual 'patient but firm' direction, has changed into stressed out frustration. I get on the phone to the emergency assessment bay. 1 hour 40 mins on hold when they answer. They assess him over the phone and prescribe some stronger tablets to try for 24 hours then if no improvement, they will treat as infection to see if that helps. So I get me and Hattie dressed and head to Northampton to get his prescription. As always, my life wouldn't be my life without a seemingly simple task turning into chaos and Hattie spewing all over herself half way home was just that. (Travel sickness because she was back on the quavers minutes later and has been fine since, thank fuck.) But we had no wipes. No tissues. No water 😭 I had to take my cardigan off and clean her up with that. The smell was fantastic, loved that for us all the way home 🤢 happy new year!! 🙄

I'd left all the next pain meds and shakes on the side for Thomas to do whilst i was gone. So when I got in and seen it all still sat there, I looked at the time. 2pm. 2pm and all hes had today is 1 lot of paracetamol and 5ml morphine. I go up to him "why haven't you had any pain relief Thomas??" He asks me "what fucking pain relief?" - The pain relief i left out before I left! He says "I've had my zomorph and thats it." I leave the room feeling completely pissed off. It feels like hes choosing to be worse than he already is. Because thats the end result of not taking any medication, being in even more pain. The EAB also say he can increase the oramorph to 10ml between the paracetamol but again, he says it doesn't do anything. It might not be doing anything any more, but it definitely was. I seen the change in him when he went from taking it willy-nilly, to religiously taking it and it was notably different. So it makes sense that if his pain level has increased then his meds need to be too. Hes been in bed all day today and its eating me up. Should I have been more patient and understanding this morning? Yes. Should I have been more encouraging and gentle? Also yes. I wouldn't wish this shit on anyone. But I only got so wound up because i cannot bear seeing him suffering. I let myself down today being short with him and its most likely because im due on my period at any minute and its been a testing few days. I make up all his meds at the times hes meant to take them and leave them on his bedside table. When i go up to check on him i see hes taken them. Bittersweet moment again. Overjoyed hes taking it but so sad about the shit atmosphere. I will apologise but im already dreading how hes going to feel as hes not had any shakes at all today 😔 

When he wakes early the following day im sat downstairs, hoping the tone from yesterday is a nicer one and that hes not too fkd after yesterday's bad day. I've already prepped his meds so when he comes in and gives me a kiss, my anxiety starts to simmer away. I go to help him and he says "its ok, ill do them" 😲 This is huge. Yes he did them yesterday, but that was kinda forced and not a naturally made decision. Today however, hes choosing to do it himself and I feel a mix of pride and sadness. Proud of him for getting here when there was times I definitely didnt think it would ever be possible, and sad that one of the only things I can do to make me feel like im helping somehow, is no longer required of me. Hes continued to do them himself too. I do prep it all for him sometimes but hes smashing it by himself. Its nice to know that if I was abducted by aliens he wouldn't waste away in a world of pain 🥹 

The bad day appears to have been a blessing in disguise. Because we've not had any bad days since. He gets up early, had his meds and feeds and THEN heads back to bed if he needs to. Rather than staying in bed until late and starting the day at a disadvantage. His pain is under control and although hes still not great, I see glimmers of normality returning 🥹

Cancer robs you of so much. Especially the "normal" you take for granted. Watching your partner drink a glass of water, tuck into his favourite meal, eat 6 bags of crisps on the bounce. We cant remember what life was like before all this. It puts strain on you like you wouldn't believe. Its lonely. Its tiring. I'm just keeping my head above water but im exhausted, so I cant even imagine what Thomas must feel like. I just want him back to himself so much. I want to fill the next year with making memories and celebrating his success and making up for last year. But we cant even start to do that until March when he gets his scan. 

Since writing the majority of this blog, we've had some really different days. Im cautious of saying "good days" as whenever I do it follows with a bad day so 🤐                Reduced pain, less mucus, a few better nights sleep. His mouth still looks sore and it hurts to swallow but hes managed to eat some custard, chicken soup and a chocolate sundae this week, as well as drinking some shakes!! Monumental 😍

His mouth sores are at a stage where he can now use the manuka honey our lovely friend Sinead got for him.  It wasnt safe to use during treatment and it was too painful in the beginning, once treatment ended. But last week we tried again. 1 tsp melted with some hot water. He held it in his mouth for a few minutes before spitting it out. This week, hes doing the same but swallowing it and his cough has reduced significantly! We have also invested in a nebuliser. This has also been wonderful in breaking up the mucus and clearing him out. These are things he couldn't/wouldn't try due to how much pain he was in, so seeing him using them and having positive outcomes, is magical ✨️ 

But like I suspected, the bliss isnt long lasting and last friday after some really positive days, he deteriorated again. Sick, high temp, emotional, shaky and getting dizzy when he stands up. He spends most of the day sleeping friday and saturday daytime but then hit the deck on Saturday night. He was going upstairs and the dizziness literally floored him when he got to the landing. Ive heard the bang and run upstairs. I help him up and get him into the bedroom. He's adamant hes ok but im worried sick. He says he just wants to sleep and im not to call an ambulance.  Its the most terrifying place to be knowing calling 999 is what you want to do, but the patient is categorically saying no. So I sit in the dark at the end of the bed, playing out all eventualities in my head and silently sobbing. I sit until im semi-convinced hes not going to pass out again and go take some tablets to settle myself. The next day I call the emergency assessment bay. Thomas is just outside the 6 week post treatment window of access to the EAB and because they are busy they have to prioritise everyone having treatment/within the 6 week window and advise us to go to a&e. I've more chance of curing him with turmeric and a clove of garlic than I have getting him to voluntarily agree to that, so I call urgent care. They said to bring him in. If they could help, great. If not, they'd send him Kettering. They allow him to sit in the car until its triage time and then give him a bed in the obs bay. They do some bloods and send him home. When I get home I look at the results. 6 are out of the normal range. Wtf!?! So im back on phone to EAB. Surely if I email over the bloods they can issue some antibiotics if they think it necessary? But no. They can't look at his bloods he would need to come over and they've no room. Go to A&E. Fuck saaake. I sort my mum to come sit with hattie the next day and tell him we are going a&e the next morning. He agrees. He must feel really really bad 😔

A&E isnt too bad. We are there about 4 hours in total. And in that time hes had bloods, an ecg and a chest xray. They compare his bloods to the day before at urgent care and his levels have all gone pretty much back to the normal ranges. They think hes picked up a virus and because hes nothing in the tank, its floored him. The dizziness too probably due to having no fuel inside. So im getting on the juicing today. He will need his ensures still but im getting some goodness on top inside if him now, we need to try new things to give him a boost because seeing him pretty much back to square one was not something I want to witness again. Seeing Thomas cry is like a knife in my soul. He usually reserves all emotions for the kids so its heartbreaking seeing him in absolute  despair. I just want to flip a switch and have him back winding me up. He actually gave me a fright during some of his good days last week. When life was normal, he would always wait round corners or behind doors and then jump out and frighten the bejesus out of me. You don't even realise some things are gone until they come back. He jumped out and scared me and I realised that was the first playful moment we've had in so so long. And he had no idea that I was absolutely breaking my heart with joy about it in the kitchen. It really is so hard to accept that hes gone backwards again. 

Yesterday was the first follow up of the spot they found near his kidney. Its not actually his kidney, its his adrenal gland and there's a growth on it they picked up on his pet scan. It was reviewed carefully and they are happy its not cancer (Thank fuck doesn't seem strong enough here!!) But it does need looking into as it can cause excess hormones and so he'll be doing some tests over the next few days to determine if it is, what hormones they are and whether he needs an op to remove it. Fml give the man a minute 😭😭😭 

So here we are! January done. Lifes still pretty fucking pants but hes here and there's hope and theres so much to be grateful for. Its such a relentless, cruel recovery but my god am I proud of him and so glad he chose to fight. He told the doctor yesterday he'd be dead if it wasnt for me. And I dont think he has any idea how those words make me feel. Because I feel useless most of the time. So for him to vocalise that he feels im such a huge part of his survival makes a bit proud of myself too. 

Sorry its been so long to update. Its really hard to remember and sometimes when i do im just too tired to use my brain. I've started an art therapy group which is 2 hours a week and im loving it. Its like 2 whole hours where im lost in my canvas and the world fades away for a bit. So im going to try use Tuesday nights to blog too while im in a creative mindset. Thank you for reading though, I do appreciate it. I hope by my next blog theres some big happy changes to report 🥹❤️🙏🏻