Week 2 - That wasnt so bad...was it???

Yes actually, it was that bad 👎🏻 I swear to god, I feel like a mug for hugely underestimating just what this poor guy has got to go through. (And i have a vivid imagination so what i did imagine was pretty grim. But nothing prepares you for the reality) 

 MONDAY MORNING WEEK 2 - Lets fucking goooo 💪🏻 I go to wake Thomas and like most days, hes already awake because hes not really slept. 

"You ok babe?" - No. 

"Whats going on?" - My insides have come out.

"What? What do you mean? - Exactly what I said. 

Now, if anyone knows Toz, they'll know hes not into toilet humour (which is a shame because farts are funny if you give them a chance 😂) and hes somewhat prudish when it comes to butt's and stuff (im giggling like fuck writing this because im very immature) So when I sheepishly asked him "can I have a look? And he rolled over without a moments hesitation - I knew it was bad. 

I take a look and hoooly fuck. Its bad. Its a fleshy mass, approx the size of the top part tablespoon and I know immediately looking at it that its not a pile and that it certainly shouldn't be on the outside of his body. He tells me he had already put back A LOT in the night before in the shower. 

First things first - Dr Google "is...a...prolapsed...bowel...life...threatening?"  Google "No but it does require medical attention as soon as possible" - ok well at least he's not let me sleep through a potentially deadly situation ffs. 

He has to be at Northampton General for chemo at 10:20 so there's no room for doctors appointments. We decide the best option is to let the docs know at Northampton and see if they can help. Long story short, they cant as its not cancer related. Sound. So I arrange him a phone call with his own doctors where they advise an ice cube and prescribe some Lidocaine ointment to put it fully back in when needed and some Docusate Sodium liquid. Its likely going to require surgery but he obviously cant do that for the foreseeable but wooohooo, another thing to add to the list of things to do post-cancer 😔 so yes, he's now dealing with everything else whilst some of him is inside out 😭 (me giving side eye to the Universe while she sits there filing her nails like "what?? I didn't even say nothing!")

Weight on arrival 74.6kg. Now Thomas started his journey at 77.8kg. And we had forgot his little cancer journal/information booklet that you keep and take in each week. So on the website last week we nipped in after radio to grab it. And he jumped on the scales. 74.8kg. Im stood like 😲 How??? How can you have lost 4kgs in 2 days? My maths skills are around the year 4 junior school level and im no nutritional expert, but even i know that sounds like a lot of weight in 2 days!! We note it and hes lost another .2kgs by the Monday. 

Dietician Jen (like Maz, we think a lot of Jen, shes so lovely and knows her shizzle) comes to see Thomas and she looks concerned. You've lost 4.2kgs in the last week, thats a bit worrying Thomas, whats going on? We explain about coming in to get his book  and that his weight was 4kgs less on the Weds, only 2 days after his first weigh-in and he'd only lost .2kgs since then. She's like - thats impossible. Theres no way you lost 4kgs from monday to Wednesday last week, with no severe vommiting or diarrhea going on. So, we agree the weight must have been wrong somehow and shes no longer worried, which is good. We will monitor his weight from this week instead. 

Back to the bullshit. Chemo goes without any issues. The iv machine Thomas gets is superior in comparison to last weeks and we dont have any delays. We've been there a while when i check the time thinking its maybe 11:30ish? 2PM?? How!? The day is flying in which is great for me but im sure Toz doesn't feel the same sat there hooked up to all that shite. 

Thomas's brother Dale lives and works in Northampton and so he often comes to see him at his appointments. I let him go in and i come out and sit in the oncology waiting room as its only 1 allowed in with him in the chemo suite. Its not long before hes done and we all head over to Radiotherapy. That too goes without any issues and we are heading home in decent time. He isn't feeling great though which is becoming the norm 😪

Tuesday is Remembrance Day but being me - I forgot. So when I nipped downstairs in oncology to the Macmillan office, then come battering back up the stairs at speed...into a silent waiting room with everyone on their feet for the 2 minute silence, I was MORTIFIED. I stopped at the top of the stairs, red-faced to pay my respects. This is where my non-existent concept of time gets another mention. I shit you not im stood there thinking "This is long? Is it a special remembrance? A particular anniversary im unaware of? It felt like i stood there for at least 5 minutes. The trumpet or horn blows to mark the end of the silence and I make my way back over to Thomas and Helen (I'll let you all know about how we met Helen in a separate blog about 'People we have met along the way' who become a part of your journey) Im like "how long was that silence? What was that for??" They're both like - it was 2 minutes? 😳 genuinely. Wtf. Why does 2 minutes feel like 20? Yet 4 hours in the chemo suite felt like 1? I do not keep time well at all. Im either 4-5 business days early or 3 days late, there's no in between with me. Luckily we've been the former for all his appointments (which, given the traffic to Northampton we face every day - is some pretty good going!)

No real issues with Radiotherapy the rest of the week. We have a 9am appointment on the Weds and a 6:35pm appointment on the Thursday. Thankfully thats the only late night one we had in the plan. Back in early Friday morning for bloods at 9:15 and Radio at 10:50. (Thomas needs a blood test every Friday before 12pm to ensure hes good for Chemo on Monday.)

All done and we can go home to enjoy 2 days at home before it all begins again next week. Or thats what would happen in an ideal world at least...

Thomas comes downstairs Friday evening and asks me to look at his chest. Hes got a rash from his neck to his nips. We call the Emergency Assessment Bay and send them pictures via email and they advise that we go over. Its 9pm and Tozs is like nahhh, im good thanks 🙄 After a bit of two-ing and fro-ing with the call handler, he compromises at - taking an antihistamine and if it gets worse or he feels different hes to go straight over. Or, if its still there in the morning - also go straight over. Agreed. 

We wake up Saturday and the rash has settled a bit. Sound! Excellent work. (I imagine the universe to be angrily peeping in our window here, seeing our joy and being pure out of order in her next move.)

By 12 o clock its back. Raised, red, itchy. Back on the blower to the EAB. (Not sure if i explained this already but the Emergency Assessment Bay is A&E for cancer patients. We dont use the usual A&E now treatment has started, unless its a heart attack or stroke, something severe like) They tell us he needs to be seen . My mum comes to sit with the kids and we head over. Thomas makes it crystal clear that IM the only reason hes going. And like I told him. Im ok with that! Ill be the big, bad, overstimulated, overcautious care giver. Because I know its better to have this seen to now and potentially nip whatever it is in the bud, rather than let it progress into something serious where he could end up being admitted, which he would hate. Hes not pissed off as such, just making it clear that hes only going to be checked to keep me happy. (The things men do for us hey ladies! Chocolates, flowers, being seen by a doctor so they dont die! SWOONING 🙄)

The EAB is a one room with a nurse station, 2 beds and a row of chemo chairs. Theres 1 man receiving a blood transfusion, a lady fast asleep hooked up to an IV who keeps burping really loud and its giving me the giggles, a gent in a big coat next to Thomas sat hooked up as well and a lady in a bed opposite. Thomas takes one look inside and he switches from being ok to not being ok really quickly. This whole environment is so alien to him, and this is now his norm. I see how much its effecting him and that switch in vibe, as hard as it is, is allowed. He sits really frustrated and whispers to me "They've got me for an hour max" and goes back into silent mode. Can't remember what snaps him out of it but hes soon chatting to the man next to him and he seems to have relaxed a little. 

The nurse comes to get some blood from him. Hes like "I had bloods yesterday, can you not look at those?" (He cracks me up trying to put off or avoid necessary medical procedures 😂) She asks what time and he tells her. She goes to ask the doctor. I know she's just being kind because those bloods were taken before the rash appeared so he defo still needs them done. The doctor comes to see him. She asks a heap of questions and is happy to prescribe strong antihistamine, some cream and wants to get some bloods to compare. He says "you're not putting a canula in because ill be here for hours..." shes laughing like "you dont need a canula, we can take bloods from your arm" 

She also points out that yesterday's bloods are showing his white cells to be a bjt raised which can be a false spike due to the steroids, or an infection brewing somewhere (praying its not the latter 🙏🏼)

We get home about 7:30pm. And we stay home. The rest of the weekend. All 1 day of it. And it feels good.

When i look back on this week, it was actually a lot better than week 1. Still rough but an improvement on last week and ill take that. Things change so quickly though and he is in bed a lot of the time. Chemo coursing through his veins and radiation to the head causes sickness, weakness, lethargy, headaches and his throat and mouth are starting to hurt too. He can be feeling ok one minute and bedridden the next. We take things hour by hour, not even day by day. 

But even that doesnt matter because whether you take things minute by minute, hour by hour or day by day, when shit hits the fan, you are completely unprepared for it 😪

Week 3 = another chapter for the complex trauma team to work through with me 😭