Week 4 - Four down, Two to go!

Monday- It feels good not having to leave early doors. Thomas isnt having chemo again this week, so hes not scheduled in for Radio until 3pm as he'd usually have hours of chemo to go through first. Not having to leave until 1pm is a small win. Thomas isnt too bad today so far. Mornings are always the worst for him so a half decent morning is a good sign for a half decent day. 

Parking at NGH is shit, IDST. Despite 1 in 2 people getting cancer now, only 1 in 5000 will get a parking space at Northampton General hospital. Oncology car park consists of about 5 regular spaces, 6 disabled and 6 electric car charging bays. And yet despite big "Oncology Patients Only" signs everywhere, you often see people parking and walking off to other parts of the hospital. Even staff from other departments take up valuable spaces. (Dont worry yourselves, everyone with cancer can walk another mile because you are a lazy inconsiderate @£#&!!) I've nearly lost my shit there a few times but so far, I've not needed to go full fistycuffs 😂 (whats the Northampton equivalent of Corby Chats Back because I might feature on there one day 👀)

I like to think im a considerate person and when that consideration isnt reciprocated, it baffles and rages me out in equal doses. I pride myself on my manners and courteous nature, so if I hold a door for you and you walk straight through it without acknowledging that, please know that I am fantasising about punching you in the head whilst internalising the rage of 1000 toddlers with the wrong colour cup in front of them. 

Same goes if im sat waiting for a car park space and some entitled old git in a skoda thinks hes going to whip in, in front of me and take the space ive been patiently waiting 20 mins for. (This one day Thomas had to go in alone while I waited for a space so he wasnt late.) There was already a lady waiting when we arrived, so when one pulled out near me, i signalled for her to come get it and I repositioned, waiting for the next one. Couple come out and get into their car so i drive down to wait. Next thing this car pulls in the entrance, gets level with the spot and indicates. I smile and mouth and point "im going in there" and hes shaking his head at me. So as the couple in the space move out I pull across and reverse in. He opens his window.... "I was going in there, i need to get my wife to her oncology appointment! I said "yes SIR, and I've been waiting patiently for someone to leave while my partner is in there alone, we all have appointments to make!! "It doesnt matter how long you waited, i got there first!!" he scowled at me and then drove round to wait for a spot. Even though I had been polite whilst i stood my ground, I felt bad!! But im also at a "do not fuck with me right now" stage of life and reminding myself that he was happy to take the spot despite any etiquette or common courtesy, made it easier to put my karate suit back in the boot and walk past him to get into Thomas without the need for a roundhouse to the head. Plus his wife clearly has enough going on without me sparring her old man over a car park space 🙄

Simple in and out. No hiccups today. Nothing major to report. A morning that doesnt bring too much sadness ❤️

Not a great afternoon/evening. Hes managed some mash and gravy but it isnt enjoyable in any way. I take Hattie to bed at the back of 8pm. I fall asleep like I usually do and Thomas leaves me to sleep then moves me over as he gets in to bed. Dont know what time it is, but it feels like ive been asleep hours when I first check the clock. 1am. Fml its guna be a long night! But it isnt and I wake at 6am with my alarm. 

Tuesday - He's quiet today from the get go. As i mentioned yesterday, mornings are always the hardest. Everything tends to ease off a bit as the day goes on but the start of the day is always a struggle. Today is Radio, Maz and Jen. But things are already bad.

I keep going up and waking him but hes really reluctant to move. Im up and down the stairs like a yoyo, giving him time updates and at 8:45 hes still not up. I said to my mum "I dont think hes getting up" 😔 We leave at 9am. I've got everything ready to go, ive defrosted the car and give him another time check. He looks sad and tired and my anxiety goes from 10 to 100. This isnt going to be a good day. When he gets to the kitchen hes really gagging and trying not to be sick. My mum scatters to give him some space. I ask if its the saliva making him gag. He replies - "I just feel sick". I know by the tone that conversation isnt happening this morning. And if silence is what he needs silence is what he gets ❤️

We set off and he sits in the back. Sunglasses on. Hes not said more than 2 words since he woke but still manages to pipe up that I took the roundabout too fast 🙄 I've been really mindful of my driving so I snap back when I shouldn't have. "I was just accelerating to get passed the lorry..." - "I can feel how fast you're going!" he continues. (Keep quiet lauren, keep... NAH, defend yourself!!!) "Thomas. I've not gone near the speed limit this whole way, you dont have to say anything about my driving, I'm doing nothing wrong!!" - he mutters something but this time I correctly choose to ignore it. Stone cold silence the rest of the way. Should have kept your mouth shut Lauren, but we all know i aint great at that 🤦🏻‍♀️

I have to regularly remind myself what hes going through, because im only human and sometimes his apathy feels like knives. I've learnt after 6 years not to take it personal, but as someone with RSD its not always easy wanting to shower someone with care when they just want you to fuck off (in the nicest possible way) 🥲 but again, i am letting it all go much more easily than I would in the past. Hes dealing with more than most people could at this point and im trying to be as mindful as I can about this ❤️

Thomas struggles being ill at all, let alone this level of poorly. He goes fully into himself to cope and its a fine line to walk between giving him the space he needs and not feeling like im being neglectful. We all just get by the best we can dont we? When Thomas feels better, he always apologises for how withdrawn hes been - but this is one time of life where he genuinely doesnt have to apologise for anything. 

Maz gets us first. Hes happy with Thomas's skin but not as happy with his eating situation. He says its not enough, but we both know this anyway. He wants thomas to maintain this weight now and try not to lose any more. More shakes, thinned out a bit with some full fat milk if needed. Basically he needs to get as many calories in now as possible. Prescribes some mouthwash and spray and thats him done. 

Jen seconds what Maz has said when we see her. Thomas has really good days where he makes up for the bad days where he cant eat. But now we MUST make sure hes having 2300 calories a day. The Ensures are 300 calories per 125ml. So 8 a day is whats required if he isnt able to eat. Hes a bit defensive cuz ive grassed him up again for not taking the laxido but he doesnt let it fester and we leave that chat behind in the room with Jen. Im sure he thinks i like being a nark but all i ever want is for this to be as easy as possible for him. He however, most likely wants me to back off...(nah no thanks)

Radio is a bit behind and hes still not great at all. He has to have some anti-sickness in the waiting room which is first time since week 2. I cant wait to get him home to rest. 

Home for 1ish and he manages a bowl of custard. I say manage, he eats most of it but it takes a LONG time and a lot of staring off into space. This is the worst hes looked apart from the manic monday. His hood is up, the tears are rolling down his face and I dont know what to do for him. I check his temp while he's at the table. 36.6 which is fine. Below 36 we need to call the EAB and above 37.5, we also need to call. "Feeling generally unwell" is also on the list of things to call the EAB over. I ask does he want me to call them. (Stupid question Lauren, of course he fucking doesnt.) I suggest he lies down. He says he will after he eats. He takes 5ml of oramorph and heads up. I check on him every 20 mins or so and each time hes asleep. Thats what he desperately needs just now, so the heavy, sleep-breathing is good to hear. He gets back up about 7pm and we have a talk about eating. He won't even entertain using the tube at this point but its getting serious now. If he cant eat he HAS TO use the peg. This conversation seems to trigger his stubbornness and he heads to the kitchen. By the time we go to bed, hes managed - custard, a tin of soup and 2 slices of bread, 3 Ensures and a trifle. A little short on what he needs calorie wise, but what a fucking turn around from earlier!! SO proud of him and I make sure he knows it! 💪🏻❤️

Weds - a better day. Thank the lord. I know it can't be helped but I really miss him when he has bad days. I miss so much about our normal lives pre-July. I will never ever take anything normal for granted again. You really dont know how lucky you are until life decides to show you - in the harshest of lessons 😞 

I get a call off the Complex Trauma Team today to book me in for my assessment that ive waited all year for. Now I have some extra cancer related trauma for them to work through! Woooo. (They'll be sorry they accepted me by the end of the hour.) I've had a therapist say to me before - "I'm not sure where we start with all this Lauren" 🫠 Well lady, if you dont know with all your expertise then ill be fucked if I know! Dont worry, ill just bury it down and be funny some more, that seems to work 😶‍🌫️

Thursday - another unproblematic radiotherapy day. Thomas had to let Maz know today if hes having his 5th chemo Monday...he is not. Maz will let Dr Rawther know. I ask Maz if this is going to upset anyone. He reminds us that this is Thomas's choice, he has capacity and has been sensible in his decision making. Not a no but not a yes either 👀 

Watching Thomas struggle at home and not be capable of the usual things he would is difficult to say the least. So let me tell you, seeing him engaging with Hats in a moment of playful joy is enough to tip me over the edge. I leave the room to mime cry (😂) You really don't realise how much is different until a moment like this returns. Hes just swinging her through his legs but her squeals of joy are EVERYTHING. These 2 peas in a pod have been inseparable since she was born. They did everything together. And its definitely affecting them both not having that just now, whether they realise it or not. I see it though. I see too much 💔 i seriously cant wait for normal order to be resumed.

Poppy calls to check in and asks would Thomas be up for seeing the audiologist in the morning, about his tinnitus. It means leaving at about 7:30 but its not as issue for us if its going to help him. Thomas has suffered with tinnitus his whole adult life. Pre-diagnosis this year, he finally went to an audiologist who removed years of wax blockage and pretty much cured him of the incessant ringing and multiple high pitched frequencies he lived with. So imagine his horror when after 2 chemos his tinnitus returned with a vengeance 😞 this time just one continuous high pitched squeal. Brilliant, just what he needed. 

Friday - ENT/audiology. They do a hearing test which makes him feel sick cuz hes shut in the little booth thing with headphones on while they test him. When he comes out they give him his results and say his hearing is in the normal range. Hes like "Yeah, i can hear fine, its the high pitched sound i cant bear". They look a bit confused so we explain the chemo/tinnitus situation. They still seem just as confused as us, but we leave and head to over Radio. There they direct us over to the blood taking unit. Thomas originally had bloods done every friday, to prepare his chemo for the  Monday. He didnt have one last week as we were told he didnt need it. (Wrong advise.) Radio still need the bloods done, so we head over to get them done. Its usually teeming with people but today its empty 😍 His ticket is 185. They call in 183 as we walk in. RESULT. Back up to Radio where he is seen early. All done and dusted by 11am and his appointment wasnt until 12. Fabulous work by all involved 👏🏼 

The rest of the evening is spent resting. He is now religiously using the mouth rinse with salt and bicarb throughout the day. This is a landmark event. A seemingly small thing for most but when I tell you, this man doesn't put anything in his mouth that he isnt already 100,% familiar with. Soluble paracetamol, dioralite, sauces, chutneys, NOTHING. Even if it will help him - he will sadisticly refuse. As he did with the rinse. Until that is, things all started tasting like shit anyway, and his mouth is so fucking sore that he was at point where he was prepared to suck it up and try. And it works, albeit temporarily. It breaks up the thick saliva and gives some moisture back. Because the radiation damages his saliva glands, they stop producing the wet part of his spit. Leaving a thick, stringy substance that can leave him gagging. And dry mouth. Hes always drank a healthy amount of water but he needs it constantly now to give relief.  And hes trying morphine a bit more too. Still mainly paracetamol but hes allowing himself a little oramorph throughout the day as well, as opposed to just before bed. Problem is - its not doing nothing. Not a thing. So we mentioned it this week to Maz and he upped the dose. Still nothing. If anything, the dry mouth is worse when he has it. So hes continuing with the paracetamol and ibuprofen and we can discuss other options on Tuesday.

Sleep is still shit but hes getting the occasional couple of hour here and there, but always broken sleep. I got him a humidifier to help with the dry mouth a little bit, but he says the noise of the water dripping bothers him (fml 😑) so I try to put it on for a bit before he goes bed instead to moisten the air but it all seems pretty futile atm. Every little helps though right?!...(Brain straight to Tescos.) 

I forgot to do his Advance and Rotate yesterday so thats another task for today. He hates it so much. He pulls his hat down over his eyes whilst I get to work. Clean the tube, unclip, lube the hole (oi oiii), push the tube into his stomach 2 inches, rotate 360°, pull back out, clean, reclip, flush, done. Sounds easy and it probably is, when you aren't shaking like a shitting dog! It honestly takes me about 20 mins to relax afterwards because it is so intense 😂

Aww and I almost forgot to mention today was our little friend Sids last day of treatment and he rang that bell 🥰 Sid and Fiona were such a lovely couple that we wish we had met in better circumstances. Fiona gifting me the little knitted emotional support plant pot that says "Life is tough sometimes,  but remember so are you" at a time when I needed it more than i knew, is a gift I'll treasure forever. I wrote her a little note to say goodbye and goodluck and handed her it in Radio but told her not to read it until I was gone because I knew id bawl. It was so emotional and I walked away choked. Their warm nature and kindness made some days a little easier and this is while they were going through their own personal hell. I hope they have the best weekend with their granddaughter, who's birthday it is on the 30th and hope so much that they have the rest of their lives carefree and healthy ❤️ 

Saturday- im up first again. (Who even am I? 😂) Hats joins me about 9 and Thomas gets up about 11. He seems ok but it'll take some time to see for sure. But the day goes on and hes semi-normal 🥹 We stick a couple of horses on, a couple of footie coupons. He's engaging with Hats. Pottering about. We even laugh today. Laughter is not something we've had much of over the last few months. Its almost like a Saturday of old 🥹 To be sitting at the table giggling over his new moustache, is breathing life into me again. 

When i met Thomas he was handsome and beardless. Then he was sexy and bearded. So I know both men well. Whevever the beard gets a bit much and he shaves it off, he tries incorporating a 3rd man into the cycle - The moustached man. And that man is not welcome here, with his 80s German porn vibes. Get that off immediately, every time 😂 Well, the universe decided that Yes! Yes you WILL accept your mans moustache and I will bring it in a way that you can't refuse. Like having his whole beard BAR THE TOP LIP fall out with cancer treatment?!? I look up at him across the table today and hit the giggles. "As IF you have a fucking moustache and I cant say shit about it!!" 😂😂 We're both laughing now. Hes loving this, the mother fucking Dick van Dyke looking son of a gun 👨 He asks Hattie "What do you think of Dad's moustache?" - "It looks good Dad!" - "Shall Daddy keep it forever?" - she looks at him again...."hmm I fink so..." she replies, clearly not wanting to commit to a solid yes 'forever' at this point either 😂😂

Its been the nicest day we've had in so long, so when it turns again in the evening because his mouth pain has hit a high, im not as disheartened as I usually am because the daytime has fuelled me up in preparation for this. I know its cheesy but I cannot stress enough that I'm SO fucking proud of him. This journey is grim but he's legit smashing it. Some days it may not feel like it but he is. 2 more weeks of treatment, 10-14 days after of radiation fucking him up (and saving his life) and THEN...he should be able to start regaining his strength and recovering 💪🏻

Today is Sunday, my birthday. Well, its the day i was born. Im not up for celebrating much this year. (41 is crud anyway, who celebrates being 41?) 😂 I feel immense guilt at the mere thought of having any fun and I KNOW THATS RIDICULOUS, and Thomas would not want that to be the case, but I feel how I feel. When im 42 we will do all the things we love again- hiking, laughing, eating. But this year all I want is for Toz to wake up in a bearable state. Its only 8:05am so its only me and the ratties awake so far. They're going fucking mental now they know im up because they know I = breakfast. We have 5 rats, 2 cats and a dog in the mad house. Daves an outdoor cat through his own weird decision making so hes not about as much. Nemanja our other cat and Snoop Dog, (and I dont care how mental this sounds) - know whats going on. The cat sitting watching us do Thomas's flush one night and he looked worried 🥺 like he had a look on his face that wasnt his usual glackit, nothing-going-on-between-the-ears type of look. And the dog, he defo fucking knows. When Thomas needs to go lie down, Snoop will sit at the bottom of the stairs softly crying 😢 and its like he senses when emotions are high and hes on you like a rash. Animals are way more intuitive than we realise. This time of life has shown us this 😔

Harley rolls in early doors looking slightly worse for wear, big grin on his face 😂 He goes in his room then comes in with a card and wishes me a happy birthday. I open it and seeing the words "love you" initiate my first breakdown of the day 🥹❤️

Thomas and Hats get up together and both wish me a Happy Birthday. Well Thomas does, Hattie is slightly confused but goes along with it. Now, Thomas hasnt been anywhere bar the hospital, so I'm not even expecting a card, and im 100% at peace with this. Him being up and functioning is all the gifts I could wish for. So when he walks in the kitchen with cards and flowers and a bag of treats im beside myself. Completely unexpected and im fucking delighted. My cards are beautiful. So are my flowers. Today is already way more than I expected and im made up. He gives me a squeeze because im still snivelling like a baby. Happy tears mind. He obviously has help in high places that im not aware of 💕👀

The rest of the day includes visits from some of my favourite people. Shay, my mum, claire & Haribo. Shays card is another one that gets me in the feels. They've all spoiled me and im truly grateful to see them and laugh for a little while. I've also missed my annual birthday hike and getting together with my friends, but I know ill appreciate it all the more next year. I will appreciate EVERYTHING more next year and for the rest of our lives ❤️

The pain is getting really bad tonight. He's barely managing water now and hes been sick from both ends today which doesnt help the calorie intake but hes doing the best he can in barbaric circumstances. Hope there's something they can offer him for some relief at this weeks meeting because the oramorph ain't the one. 

Roll on week 5. If it goes anything like this one, I dare say we will cope. Thanks again for reading my waffle. If there's ever anything I write that you're unsure of, or want to ask about, leave a question underneath and ill respond as soon as I can. 

Love and laughter to you all 💕