Week One - What the Fuuudge

Hello beautiful people 💕 

Neither of us slept too well the night before. Thomas hasn't been sleeping at all tbh. Its been a couple of weeks now and its really starting to effect him. 

Chemo  took longer than expected because of the bloody iv situation, but there's no concerns. Thomas scores 77.8kg on his first weigh-in, which is just over 12 stone. He was advised to eat as much as possible in the build up so as to have a healthy reserve to lose when the weight starts coming off. (We later found out this was NOT what the dietician would have advised at all 😬 mostly due to the fact that he would drop back to to his standard weight quicker, leaving his mask loose. Luckily that's not happened....yet) 

The chemo suite has the most wonderfully brave and positive people in it. Terminal people chatting away and showing courage you cant imagine having (and wouldnt want to imagine either.) It also has a lot of poorly looking people in head scarves and blankets that appear to be deep into their treatment. You just want to wave a wand and make everyone better. BIPPEDY BOPPEDY BOO, YOU'RE ALL TICKETY BOO 🌟 If only....

As the week goes on Thomas is still not sleeping and its having a terrible effect on him now. Neither of us envisioned week 1 to be as hard as it has been but I think its a mixture of - starting the treatment and it all being new, lack of sleep, medication and just feeling pretty out of sorts all the time. Hes broken down more times in this week than I've seen in 6 years. Full crying in public is not Thomas. But its been uncontrollable. It is absolutely heartbreaking watching him struggle and I feel so fucking helpless. 

Next up this week was constipation. Delightful, exactly what you need when you're already dealing with too much. The medication is really fucking with his insides. Thomas has never done well taking tablets. He would rather suffer than take anything so watching him have to take all the things that on a normal day he would refuse point blank to touch, makes me feel really proud of him.

We meet Maz his radiology consultant this week. Hes already one of our favourites. I love his mannerism. He's straightforward, knowledgeable and to the point - but also really reassuring and helpful with solid advice. It was Maz who told Thomas that if the tablets were taking a toll on his guts then to ask in chemo next week for everything to be in liquid form. That way, medication isn't having to be broken down in his digestive system and this might help. Sounds like a plan Maz 👌🏻

Day 1 was ok, day 2 was dreadful, day 3 was also pretty bad. Day 4 - he perked right up and was the best he'd been all week. Day 5 - the last day of week 1! I was gagging on marking this week off on the calendar but the Universe (who is still very clearly on her period or peri-menopausal) decided another challenge was what Toz needed. So she allowed the servers to crash at the hospital. This meant - all the radiology beds were out of use. We had been there since about 10am, the machines went down 10 mins before Thomas's appointment time. (So close, yet so far - but also not as close as the poor bloke who was gowned up, on the bed ready to go and had to come back out 😭) 

After a couple of hours they came out and went round every person to discuss their options. Some people could go home and return the next day, some people could leave and have a day added on at the end of their course. Thomas...cannot. He is category 1 and his options were - you need to stay as you need your treatment. Thomas has to have the set amount of radio within his 6 week window and cannot miss a single sesh. They drill that into you from day 1. We were told that we could go for a wander,  grab some food etc and they would call us when everything was back up and running. 

On the Monday when Thomas was strapped up i went for a little walk to give him some peace. (He sometimes need a bit of solitary. The sunglasses have been a godsend as he really struggles with the lighting in the hospital. It also hides a multitude of emotions. They really are his armour at times) I walked over to the newly opened Maggies Centre. A sweet little lady in oncology who was battling breast cancer told us about it and said to visit if we could. So I did. I walked through the front door into this big, airy building that had an instant calming effect. The decor, the colours, its all designed with the people who use it in mind. Theres a big open plan kitchen and then its just lots of little rooms and areas to sit. On my first visit I was met at the door, I broke down, they comforted me, made me a brew, sat me down and let me share what was on my mind. I spent an hour or so there before heading back up to Toz. They told me to bring Thomas in when he got chance. So when the machines went down that was what we did. It was about 2pm by now and Toz wasnt in a good place. He was nauseous, tired and in need of rest. Which is exactly what Maggies provided him with - a safe, comfy place to lie down, turn off the lights and let his body rest. We were just left to chill and I found it really reassuring that on both visits they knew exactly what was needed of them. With me, I sought comfort and reassurance. Thomas wanted nothing but quiet, uninterrupted rest. And both times they delivered. It is a godsend of a place and there's courses and classes they can enroll you on, its all fully dependent on what you want from the service. I couldn't recommend it enough. 

Maggies shuts at 5pm so we thank them and head back to radio. Where everyone is filing out. Im like whats going on? Someone said "they've pulled the plug on today" and my shitbag body said "INITIATE PANIC ATTACK IMMEDIATELY!!!" 😳 I could feel my chest getting tight, my throat getting smaller - what do you mean?? Thomas cant miss any? Hes category 1!! We've been told he cant miss a session or his chances of success are reduced??! And im gone. And the nurse squeezes me, not like a stranger but like im her child. "Im so sorry Lauren, I know we drill that into you from the start but we also have contingency plans for when these things happen". And she proceeded to explain things from a radiologist's perspective. Yes, it's not ideal for him to miss a day but as long as he has it the next day or it won't affect his chances. And if he couldn't have had it Saturday, he was getting double blasted through the week on one set day. Again, something they don't like to do unless its unavoidable. "So he won't lose percentage on his recovery if he gets it tomorrow?" - No. He will be fine, I promise". (She did go into more details about the window of time and amount of radiation but im sketchy on the details. I heard "his chances won't be reduced" and I think my brain focused on that part, limiting what else went in!) So its back tomorrow on one of his days off (booo) but as the man would say "It is what it is!" 

We get the Saturday out the way and have Sunday to chill at home. Chill, hahahaha im like a cat on a hot tin roof 24/7 so chill isnt quite the right word. We get to stay at home, which is nice.

And it felt like we were pretty much ready to rock his 2nd week....but alas...the Universe, rubbing her sadistic little hands together said - " ooh look at you...you're doing great Thomas, handling it all way better than I thought. But wait, what's this...your bowel is still on the inside your body?? 🤔 hold my drink...."  😳😳😳😳😳

In summary - week 1 was harsh. Way harsher than expected. Some good days and some really bad days. The brief mood changes and uncharacteristically short temper are hard. But we are allowing it. Allowing it all. Every short fuse. Every frustrated outburst. Every breakdown. Every single emotion - is allowed. However this beautiful man responds is ok with me. Im giving him 6 months (to be extended if needed) to snap, cry, wobble, bend, break, shout, ANYTHING. (Then normal order will resume and he won't be getting away with NOTHING 😜)

Join us in week 2 for parking, prolapsing and problematic rashes 🙃