Week 3 (Part one) - The Monday that changed the plan...

Monday morning. Week 3. Up with the birds. Priority coffee, making sure everything is ready for the girls, ironing clothes for me and Thomas and making sure both our bags have got everything we might need - diary, anti-sickness, paracetamol, radiotherapy cream, sunglasses, charger, headphones, xylitol gum, purse, wallet, phones, 3 French hens and a posse of Peruvian pan-pipers...

Thomas gets up and straight away he's not good. Feels sick. Groggy. Emotional. It's a bad start from the minute he opens his eyes today. It's been the worst night yet that he's had for mouth pain too. He's in a bad way and he looks the way he feels. 

We get to Northampton on time and it's business as usual. Weigh-in 73.4kg. The book goes in the basket and he picks a chair.

The more days that are passing, the sicker he looks 😔 which is hard to see given that Thomas was in some of the best shape he's ever been in when this nightmare began. But today's the poorliest he's looked and because he's out of sorts too, it's making my heart really fucking sad.

He gets his obs done and all is ok with those. Blood pressure is a little low but only borderline. Emma is his nurse and she's another with whom we hit it off immediately. She comes to put Thomas's cannula in. Straight away he's like - that's a bit sore! She gives it a tweak and tests it to ensure it's flushing right, then tapes him up. Magnesium and Potassium are being prepared to go up when Dale texts to say he's arrived. I tell Thomas I'll let Dale come in and I'll go get some drinks from Costa. 

I'm halfway there when Thomas calls me. He asks what the medicine the GP prescribed was called. I tell him, he thanks me, and hangs up. I carry on to Costa and I'm almost outside when Dale calls me. His voice is full of panic and emotion. "Lauren you need to get back, I don't know what's happening, there's loads of doctors and nurses around him". 

At that exact moment, it felt like the world had stopped and then restarted in slow motion. I turned and ran like I have never run in my life. Sound warping in my ears. Weaving in and out of people, going as fast as the 2 strands of cooked spaghetti someone had swapped my legs for would carry me. I get to the chemo suite and everyone who was in Thomas's area has been moved out. They've pulled the screens around him and Dale is stood in tears next to the bay Thomas is in. I honestly can't really remember the first few minutes completely as I was trying to breathe so as not to pass out. I remember nurses reassuring me, i remember hugging Dale and asking to see Thomas and the nurses did let me quickly and I wish I hadn't tbh. He looked absolutely dreadful and it took the breath clean out of me. Grey/yellow skin, sweat covering him, oxygen mask, ecg wires. I go to pieces. They took Dale and I into a side room and made us a coffee while the experts made sure he was ok. 

Dale explained what had happened. The first bag to flush went up. And it didn't feel right. Thomas knew it didn't feel right and started to feel weird and get a bit panicky. He said "Get a nurse Dale" but before Dale could follow through with it, he knew he was going to pass out and pressed the emergency call.(After pressing the chairs recliner remote a few times first 😭) That's all he remembers and Dale said within seconds there were about 10 people around him. (Super reassuring to know that they act that fast!) 

After what feels like an eternity but is only minutes, they come in to say he's well enough for us to go back in to see him.  I didn't want to be rude and leave the coffee there they'd made me, so I was trying to pick it up but my hands were shaking so much it was just slopping all over the desk. "Fuck this!" I mutter as I give up and leave it where it is. Trying to pick up my coffee meant Dale had gone ahead of me and just as I'm catching up he's coming back towards me in tears. INITITATE PANIC MODE AGAIN!!!! "What's happening???" I ask the nurse, thinking he's gone again. "Nothing, hes ok - hes just been a bit dramatic today your man" 😂 I did run after Dale once I'd given Thomas a kiss but he was long gone silver. Legend has it he's still running now.... (just kidding we've seen him since 😆 i know im making light here, but it was really traumatic. Dales big brother is usually staunch and steely and not in any way vulnerable. So seeing him like this must be really fucking hard.)

I get back to Thomas and it's the biggest relief that he's upright and able to talk to me. He still looks fucking terrible like, but he's alive and I genuinely thought he was unaliving half an hour before. My heart is battered. I would give a limb, give up coffee forever, forfeit my driving licence, promise to never hike again, anything... if it meant taking this away from him. 

Watching the love of your life going through this journey of pain is soul-shattering. I honestly have no idea where either of us finds the strength to keep going each day. I'm not a coper at the best of times, but I've been mostly coping... I guess it comes from a place of love and knowing he needs me to be strong. And that's not to say I haven't wobbled. I've broken down, sobbed hard, cried into my pillow, wailed in the car, I've 100% had moments. Yet once the moment passes it's back to support mode. (So many modes to jump in and out of!) 

We wait for the doctor to come see him to decide what happens next, but in the meantime, we have a conversation with someone (who shall remain unnamed and I'll explain why later) and the words "at the end of the day its your body and your decision" were spoken. This person in NO WAY said - Dont have chemo... But for the first time, we realised that we'd not even stopped and considered the treatment plan. The experts said what was needed to save his life and Thomas agreed to it all...

Doctor comes in, yet another lovely lady. Warm, calm, comforting - and she says they've decided Thomas isn't going to have chemo that day. Or that week. They think Thomas's blackouts are a stress response to medical procedures. Both times he had been in pain (his stomach peg the first time and his mouth/the canula the second) both times had been following a night of no sleep, and both times were during a procedure (peg flush and IV fluids) taking place. Added with the stress of what hes going through and combined with the fact that hospitals and procedures are so out of the ordinary for him. So it was too risky to push ahead with the chemo. 

(You've probably guessed my next move 🙄) INITIATE WORST CASE SCENARIO MODE. In my head, missing this chemo means a death sentence. But then we start talking percentages....

Thomas's main part of treatment is Radiotherapy. That's what they call his 'main course'. His chemotherapy is his 'side salad' (or as Thomas renamed it 'The chemo chaser' 🙃) The Radio however, is where the biggest percentage of his chance of success comes from. It's a lethal, diabolical, painful treatment....but without it he just wouldn't survive. 90% of his chance of recovery comes from Maz and his miracle team.

The chemo (in the most basic terms possible) is making the cancer more responsive to the radiotherapy. It weakens and shrinks it i believe. But the Radio obliterates it. (Unfortunately, a lot of healthy bits get caught in the crossfire but healthy bits can regenerate, the cancer can't.) 

The chemo gives Thomas another 5-6% chance of success on top of his radio. Which obviously gives him the highest overall possible outcome for success. At the beginning, this is what we both naturally thought was the best course of action. But he ain't at the beginning anymore...

Because Thomas isn't having chemo this week it means he won't need the Aprepatin, Steroids, or the Ondansetron. (I should have mentioned Thomas's prolapsed bowel is a result of taking lots of medication and straining too much because he had been told he shouldn't have a buildup of toxins in his body when having chemo. If you do get bunged up, they bung a load of stuff at you, to make you unbunged.) So it's great that he has 22 tablets less to take this week compared to last. Just some laxido, numbing mouth wash and mild anti-sickness to take home this week. (Plus the thrush tablets for his mouth and antihistamines for the bloody rash he got in the EAB on Saturday) 

We head over to Costa to get a drink before radio and Thomas calls Dale to let him know hes ok. (It was awful seeing them both so upset but really good to see them being able to have a tiny laugh about it. Well Thomas laughed, im not so sure Dale did on the other end of the phone) 

Thomas still has his shades on and although hes talking and managing a drink he still looks like he could keel over at any moment. Its at that point i start to think about what would have happened to him if he had the chemo. I genuinely believe he would have ended up in hospital because he did not look well as it was, another bag of Cisplatin going in really didn't bear thinking about. This week was going to be interesting to see the difference in him without the chemo. 

Word travels fast in Oncology and by the time we get to the Luke Building, they know all about Thomas's episode. We take a seat and for the first time ever in there, Thomas leans back into me, half laying down, in an attempt to try and get comfy because hes not feeling well enough to sit up and needs to rest. His sunglasses are still on too and that's never a good sign. We haven't been there 5 minutes when Maz comes out to see him and gives him a little nudge to let Thomas know he's there. He asks Thomas what's gone on etc. Thomas tells him then asks him about how necessary he thinks the chemo is going forward. Maz says they can discuss it tomorrow when Thomas is next due to meet with him. 

A couple of minutes later Thomas is called in. He usually does the next part alone but this time Maz comes to get me after Thomas has been called in. I go after him and he takes me to Thomas. They've given him a stretcher type bed to lie on out of view so he can give his body the horizontal rest it deserves, with a little chair pulled up next to it for me. That small act was huge. It made me feel like he wasnt just 'there'. They saw him. They cared. They made adjustments to make him comfy. We both felt supported. It all matters SO much. We were both so chill back there, neither of us heard the lad calling his name when it was time for him to go get acquainted with pinhead again. But he's in and hes out. Time to get this motherfkin G home ❤️

We get home, relieve our dreamteam of their unwavering support duties (there will be a blog dedicated to them in the near future) and Thomas makes a bowl of soup and sits at the kitchen table. Hes just sitting staring and looks drained. Im trying not to freak out but he looks pale again. 

"Babe. Are you ok?"

"Yeah, why? Im just waiting on my soup cooling down?"

"You just look like you might pass out again at any moment. Do you definitely feel alright?"

(Im always torn between knowing hes sensible enough to alert me if hes not feeling right, but also knowing that this mofo knows one peep put of the ordinary and hes over the EAB faster than he can say "I'm fine!" which he will try and put off at all costs)

"Yes Lauren, I just said i feel ok, im just sitting waiting on my soup cooling down, im fine" 😐 

I know the conversation is over but my suspicion is not. So I stand and wash the dishes at a slight sidewards angle, so I can still keep one eye on him at the table behind me...👀

We are both well ready for our bed when we eventually get there. Some conversations took place that night and I told Thomas I never thought id say it, but after seeing him so poorly that day, I was glad he hadn't had chemo. He agreed. It will be interesting to see how this week goes.

Im not an overly spooky bitch. I've had plenty of freaky moments in life - picking up the phone to call my best pal and shes already on the other end (retro housephone era) or sitting crying and my other friend calls asking if im ok, or even the robin that came to see me after my gran died and sat on my fishing rod next to me for half an hour, just checking me out whilst silent tears of emotion rolled down my face. We all have those moments of woah - freaky. But today genuinely, as fucked up as it was, felt like it happened for a reason. The stars did not align, everything was off from the minute we got out of bed, Dale being there, the canula not being right, the whole morning felt different. I strongly believe that if Thomas had his 3rd chemo he would of been hospitalised shortly after. He really did look that poorly today. 

I obviously dont want Thomas to lose any percentage of success. Hes already told me he couldn't go through this again so im terrified as it is. But whats the point in the 5% if its killing him off? I dont think he would have got through the radio with the chemo making him that ill. Its all so scary but I still feel like this was all some sort of divine intervention. You have to weigh everything up when you're in the situation and Thomas and I, at this point, agree the 5% (maybe less because he did have 2 lots of chemo) doesnt seem to outweigh how bad he was on it. 

God almighty this was a long one and its still only Monday. 2 parts is definitely in order! Im sure you'll agree that cancer is not fun and we are not having a great time. 3 more weeks of treatment and then 10-14 days of post treatment hell. The only saving grace with the 10-14 days is he will be able to go through it at home without the journey to Northampton every day 😑 

Tune in later for the rest of the weeks shenanigans ❤️