Getting used to my new life – The next steps – To absent friends

Hi Everyone,

It’s been a couple of weeks since my last post. I’ve been at home for the majority of it. Healing up and learning my new life with a stoma and I’ll bet you all have a million questions about it. So please, if you want to know. Ask away.

Thank you to friends and family for all the lovely get well soon cards. Props go to Ste and Lynsey for having one made and marked with ‘It’s in the bag’ Risque one might argue? Not in the slightest. That’s 100% my humour.

I’ve had some ‘Stoma Nurse’ visits and they’ve really been helping me. They were checking up on me, making sure I can change my bag (hereafter referred to as ‘having a poo’) They had to change the type of bag I am supplied due to my stoma receding on one side. Apparently it happens a bit, for 101 different reasons. So it meant that I now use a different one where the aperture part is concave and it’ll help me. They had to remove a whole bunch of stitches as they were just pulling and not helping. I’ve had to take extra care not to pull at them, then… Obviously, bending down to pick up dog poo in the garden. I pulled the stitches…because me.

I was also introduced to the company that supply me. They set me up so I can call the call centre and order at any point. I asked if they have an online portal I can order through and…thank the gods. They do.
I don’t want a human interaction on that. For some reason, though I know they’d have been lovely and all. I just wanna click a button and have it show up at the door. I am the generation I guess.

So I have it down to an art now. It’s still having a poo with some mild alterations.

The pain has almost completely subsided in the wounds, I still feel them pulling when I’m moving around. Also, being forced to adopt a new sleeping position is actually HELL. Who knew?

I have 100% always been a side sleeper. I try to sleep on my left, oh you just had surgery there. I try to sleep on my right and I have a pain. This is the location of my liver or so I am told. I have been sitting on this information as I didn’t really want to say but we are at a point where I cannot cough or sneeze or roll over in the night and I notice a pain. I also have a rogue pain in my shoulder which can be attributed to liver pain. However, this pain is not with me 24-7 so don’t worry about that.
The good news is, I am healed up enough to sleep on my side a bit and I may have gone to sleep on my back a bit but find myself waking up on my left side. I am sleeping all the way through the night again too. This has improved my life dramatically. No more waking up in the middle of the night and foolishly turning on the TV. When I feel myself drifting or my eyes getting heavy, off with the TV and go to sleep. I’ve always been an early riser and a ‘once I’m up, I’m up’ type. However, I’m not napping every day because I’m tired due to no sleep.

So it’s just me and Rupert this week as Kerry is in Orlando, FL this week for her company’s engineering all hands. (America being one of the few places that have hotels big enough to cram 2000 programmers into. If you’ve been paying attention to the weather at all, you may know that poor Kerry endured a wonderful 36+ hour journey to the US. A whooooooole load of waiting and a night in a hotel in Amsterdam. These things do happen, she made a friend out of another passenger stuck in the same predicament, which I am really proud of her. Anyways, this whole shitshow debarcle allowed her to tick off a few things off her list such as dining alone, get a big flight delay/miss a flight and she handled it perfectly. I know she handled it much better than I would have.
Anyways, she made it there, she’s with her teammates. She reports she’s missing the dog, every. single. building in Florida/America is brown and she’s going out for a Tex/Mex meal tonight. I’ll await her photos tomorrow (People of the UK, the menu kinda read like Chiquitos)
She has to stay an extra couple of days in the US as they needed specific teams to send a representative for a thing that’s coming up. Now, because of this, come Friday she had the option of going to Disneyland but it would have been an option but then straight to the airport and home. Now she has to stay the weekend and fly home later. She’s going to Disneyland with some of her colleagues. I quickly snuck some money into her bank account and told her to spoil herself and get a souvenir.

Rupert really misses her and has been standing vigil at the front window waiting for his mum.

Lil’ pleb, not like he hasn’t left my side since she’s gone.

My next steps are mostly. Get some radiotherapy on my bowel. Get on this new drug Regorafenib. My phone has been going nonstop this last week.
Then you receive an NHS letter dated 3 days prior inviting you to attend the hospital the FOLLOWING DAY for something you have no idea about.
Like, Really?
The phone has been ringing off the hook because Dr Hashme wants me to have some more up to date scans, both MRI and CT. They’ve been arranged for next week *checks notes* MRI Wednesday and CT the following day.

The letter on the other hand, (You know, if it wasn’t plastered with personal info on it. I’d scan it and show you all)

It doesn’t have a consultant’s name on it.
It details appointments ranging from the following day all the way up to August.
Doesn’t tally with anything any of my consultants has told me would be a treatment schedule.

This left me clueless. So I call the number. You know what? They just weren’t helpful in. any. way.

Rehearsed statements, sighing and trying to get blood out of a stone.

It’s sad really as I’m lucky to report I haven’t had a lot of issue with hospital bureaucracy.

Suffice to say after being on hold repeatedly and hearing unhelpful statements like, “we aren’t medically trained on this phone line”
Great, thanks but my question was “what’s this for please?” because the letter sure as shit doesn’t say.
“You’ll have to ask your consultant”
There’s zero point in taking it out on the people on the phone. That’s not me.
I politely asked if they could pull up a copy of the letter on the system
Great, now can you see the part where it says the consultants name is blank. So could you please tell me the name of the consultant that arranged this?
“No, it’s against GDPR to give that information over the phone”
*sigh* Can I list them and you say stop when I confirm the name of my consultants?
“Yes that’s fine”

F**k me! Thank you for the information.

Armed with this new information. I contact Dr Pedley again, I have said this before. He’s lovely and you only need send him an email or a text is quicker tbh. Any idea what this is for? The people on the phone weren’t medical professionals and couldn’t say.

He calls me a few minutes later and explains everything.

I’ll have monthly updates at the hospital, blood tests etc and staging to get me setup on this new drug Regorafenib. We will have to pause me taking the drug whilst I am on Radiotherapy with Dr Hashme. However, it’ll be a total of 5 sessions of radio compared with the 28 sessions I had previously with Dr Pedley. This, I am told, is because I will be having a stronger more condensed version of the radiotherapy. Something they wouldn’t have been able to give me previously with a fully functioning bowel. I won’t go into it but it’d have been hell on earth. Doesn’t really fill me with confidence sadly.

Dr Pedley then went on to explain, we could not fathom why I was sent a letter with 24 hours notice to attend. This vexed him as much as me as he knew that appointment would go to waste as there would be very little chance of giving it to someone else.
Could I leave it with him so that he could get me dates that coincided with me being in hospital the following week. When Kerry was back from the US and I had a support network etc

It’s mad and aye it beggars belief but please allow me to make this clear.

This has not been a jibe at our already stretched out NHS. I am not putting any specific people down. I am not in control of any of the NHS’s processes or the general understanding of how GDPR works. I think it’s become part of the lexicon to say GDPR.

So anyways, I await to hear back from Dr Pedley about meeting the new people that’ll be doing blood tests and stuff relating to the new drug.

Though I have no dates as yet from Dr Hashme about the radiotherapy. I doubt it’ll be too long before I have them either. Scan’s next week. Plans probably to follow the week after.

Lastly, I just want to say.

When you’re fighting, you meet people along the way that are fighting too. Sometimes, you’re fighting your own so hard you forget about the others fighting too. You forget to check in on them and see how their fight is going. I think back to the people I first met at the Q.E. Hospital in Gateshead and wonder how they’re getting along.

You remember about friends and family fighting too. You sometimes find out that family “Didn’t want to tell you…”

This week I heard news of my best mate from school Paul’s father John had lost his battle with this awful fucking disease. We found out at similar times about our own cancer journeys. I know he was an avid reader of my blog and my heart goes out to Paul and his whole family.


Fuck this disease.

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