So it’s about a month since I posted last, and subsequently I’ve had a lot of time to think about things.
I met with Professor Plumber at the Bobby Robson centre in the Newcastle Centre for Cancer Care (NCCC)
I am not sure if I went into the meeting with an incorrect idea of what would be offered. That or I’ve been kidding myself as to what the outcome may have been.
Ruth (Prof Plumber) is very matter of fact, very direct. However, during the short time we shared, and during conversations we had, both Kerry and I noticed a couple of the things discussed with us really felt quite insensitive.
Like, when we were discussing the Oxaliplatin side effects, she was joking with her subordinate about how ice cream/lollies were provided to the patients without knowing at the time how overly sensitive the patients would have become to cold temperatures etc. Blah blah, took them months to understand that wasn’t a good thing.
Yeah, ha ha, something I’m going to be stuck with for the rest of my life, yeah… fuckin’ hilarious doc! Tell me another one
Well, Seems like a daft thing to get worked up about but it’s the small things that all add up. However, the meeting on the whole was okay-ish.
I have accepted going on to any clinical trials that Ruth may think worth while. We talked about efficiency, time scales and really what I would be looking at in the long run.
These sort of trials are phase 1 and 2, they are not yet phase 3 where there would be a placebo in the mix. All trialists are on the medication and to me. That does sound worth while.
So before I move off the subject because a lot have asked. This is not the end of my treatment. I am not giving up and although on paper. While Yes, it does look I have stopped responding to chemotherapy. It does not mean I won’t be on chemo again. I had been offered a palliative form of chemotherapy from Dr Pedley. I won’t be going on that one. Whilst every. little. helps. I do know of that chemo and to give me another 4-5 weeks of life expectancy I have other avenues I wish to pursue first.
Kerry has been researching and we have been looking at some immunotherapies. Now, firstly. These are *NOT* available on my medical insurance. A course to complement a 3-6 month course of chemotherapy could be £2,500 to £5,000. This is something we are considering.
Although brought up in the previous blog, I am beyond considering the cannabis resin. I’ve moved that into a definite now. There are another couple of things too.
We would also like to have another chat with Dr Pedley, depending on the outcome of this chat, I think we can all agree I would be remiss if I weren’t to get a second opinion. One of the benefits of my health insurance is the open door-ness of that.
In other news. This morning, I accepted an offer for my flat in Gateshead. Though I cannot go into detail. I am selling it to a neighbour who’s always been lovely to me. Their offer is more than generous, it really is a sellers market at the moment. I discussed once making a huge loss on the property. However, this sale would clear all of my secure debt on the property and pay the fees too.
This has me walking on cloud 9 right now. The idea that I will be soon free from these shackles. Actually have some money coming in that does not immediately go onto a mortgage and bills for a home I do not live in. Yeah, I’d say that’d put a smile on any of your faces.
Halloween. This year marks the first year in my and Kerry’s relationship where we were in a position to allow trick or treaters to come to the door.
The old flat was a flight and a bit of stairs each time the door rang. Half the time it was Gateshead charvas (Southerners read: Chav but worse) not in halloween dress and chanting the ever popular “They sky’s blue, the grass is green, have you a penny for halloween….?”
However, these kids don’t want chocolate and sweets, they want your money. The thing is… How much money? 50p each? a quid? The other thing is, you say the wrong thing, or close the door on them. You’re running the risk of smash goes a window or the car outside your flat get’s keyed. You really think we’d be exaggerating but that’s why most of my mates that live on the avenues. Close and lock the door and then turn the lights off during halloween. Oh that and the fact they come round on bonfire night with a guy asking for a penny for the guy too. Turns two weeks of the beginning of winter into a chav dodging experience.
Anyhoo, good news. As we are tucked away in corner of our lil’ cul de sac. We put up cobwebs and halloween bunting, a skellington on the door knocker, turned the living room light green, put our halloween cat and pumpkins at the front door and waited.
I’d not long served Sunday dinner, (I knew I should have served it as lunch) when the first knock came…and the next….and the next.
Firstly, I would like to say, not having a flight and a bit of stairs is a winner. Corralling Rupert into the living room each time was about the hardest part. Then answering the door, pretending to be scared, making sure the kids took two… go on, have another one.
Seeing all the parents wrapped up warm by the car port smiling at us. (Us actually smiling back knowing their not going to have a decent night’s peace in a week or so with the amount of sugar in their kids)
So there we go. Next other than my sister and my birthday’s is Christmas. I have agreed to putting the decorations up as soon as we can get our tree. I’m excited for Christmas this year. We STILL won’t have our dining room furniture for this Christmas so fingers crossed we get a decent invite from the famalam this year (tee hee)
I’m doing alright, you know? It’s tough, I’ve had a fair few sleepless nights. It’s been my every thought for the last month or so. However, I am keeping chipper. I’m trying to at least. I am not going to go down the route of asking for time scales or life expectancy with my Doctors. I am not ready to hear that shit. I just want to keep fighting this until I can’t anymore. When the time comes to that… I’ll let you know.
Just know, I’m in an alright place right now.
I’ll leave it at that for now.