Sat 6-Dec – the young ones have landed
My son, Tom, and girlfriend have arrived. Teresa picked them up from the station – one more of my jobs palmed off on her – then went to our butcher in St Just to collect the meat for the “family” (mine not hers) Christmas on 21st. One consequence of their being adults (i.e.. twenty-one and twenty-three) is that they are rarely in the same place, so Christmas with terminal Dad (said with huge ????) is the order of the day before they go their separate ways again (that said I think there are plans for them to meet up at their mum’s on the 25th – so they get two Christmas dinners this year – not bad!)
Anyway, Teresa had decided on rib of beef for the carnivores (chicken breast stuffed with feta cheese and wrapped in parma ham for the white-meat eaters – me and my daughter). What arrived on the beef front was something akin to the introduction to the Flintstones TV series when a steak tips over Fred Flintstone’s car. Those two ribs easily could do that – I’ll leave Teresa to put a suitable mouth-watering depiction in here, it made me feel sick so I am biased 🙂
Once Teresa was back home, my daughter turned up to take son and girlfriend off to do some shopping and Teresa and I finished putting together the bed. Fortunately, I was able to finish tightening the bolts so no more of those spatial awareness difficulties from earlier in the week!
Sun 6-Dec – Sausage rolls
Every year, going all the way back to my childhood, I’ve had sausage rolls for breakfast on Christmas morning. I’ve been making them myself for 30-odd years and over that time have refined my recipe and “secret” ingredients. Teresa had to make them this year, for the first time in 30 years I couldn’t and it was difficult to have to watch someone else getting on with the job – in fact in the end I couldn’t watch I had to help at a distance.
So, today Teresa made up “the mix”. It takes a while to do so she so once it was done she popped the bowl in the fridge and left making the rolls to the next day.
Mon 6-Dec – 1st batch rolls
I showed Teresa (with gestures) how I make the rolls, proportions, etc, then left her to get one with it because I couldn’t handle watching her “do it wrong” (as in, do it perfectly fine but not EXACTLY how I would!)
As it turns out she made them about 100% larger (in meat content, and I am generous already) than I do, but hopefully next year she’ll have her own way of doing them or I’ll be able to do it myself, either way, the sausage roll tradition and Bean’s recipe lives on!
We use “fresh”, ready rolled puff pastry so we can freeze the sausage rolls uncooked, then cook them when needed – best way to get them crisp every time. I used to cook then freeze and heat up in the microwave, but Teresa doesn’t like them microwave-warmed and wanted it this way and I now agree it’s a much better way.
Still working at ‘job work’, albeit gently
Tue 6-Dec – 2nd batch rolls
1st batch bagged, second batch loaded onto trays in freezer to be bagged tomorrow
Wed 6-Dec – Cancer clinic
We didn’t really know what to expect of this visit. In the event there were no scans, no blood tests, just a long chat and a lot of questions answered.
We need to organise blood tests before the January visit, which will be done at GP. There will then be a CT scan before February visit and this will be scheduled at West Cornwall Hospital, in Pz – 15 mins drive from home for those from foreign climes (East of Hale 🙂 ) – apparently, they have a new scanner, we didn’t know they had old one!
So, the only trip to Truro is to see the expert when he has all the results. Very civilised, other parts of the country seem to go through a lot more faff and travel if you’re not local to the consultant’s hospital
Teresa was more stressed by this visit than I realised (Mea culpa). By the time all the shopping was done on our way home and we (Teresa) had picked up fish and chips from Frasers down on the Penzance prom, Teresa had passed the point of no return and driving up Morrab Road reached a point where I thought she might start ramming cars out of the way. All my fault for not understanding how stressed she was and not supporting her as much as I should have. After that I did my best to care for her and to support her. But being Autistic, I cannot do this stuff on instinct, I have to do it logically and I often forget. She is so stressed, I am worried for her and feel responsible for the load I am putting on her (I try to minimise it) and for the stress she is under (which I have no control over other than to make sure my actions don’t add to it as much as I can) however see “Tears at Breakfast”
I am trying to encourage Teresa to return to normal activity after New Year so she can feel supported by people for whom this emotional stuff is instinctive.
If anyone gets a chance in a one-to-one situation with her (not Facebook), please help encourage her to re-join humanity and leave the old crip at home 🙂
Thu 6-Dec – Xmas Dinner, shocks and scares
Do bottoms make you squeamish? Not me, but they do Teresa, yet it is an important part of our life at the moment. If you feel uncomfortable, feel free to skip forward 🙂
Pazopanib tends to cause diarrhoea, pain killers cause constipation. Even though Tramadol is mild in that respect, at the dose I am on it is clearly winning over the Pazopanib. I had a problem when I had a broken leg 5 years ago when I did get bad constipation and clearly a blood vessel was damaged by “straining”, since then there have been two occasions of “bleeding” and they were both scary. So, when it happened this morning, the alarms when off, of course I told Teresa. Squeamish as she is, she wants all the details of what is affecting me. We got in touch with the oncology unit in case there were consequences of the bleeding due to how the cancer or Pazopanib that affected the problem. They agreed that how I normally managed it (you don’t want to know) and taking laxatives overnight was the best idea, then review tomorrow lunchtime. Of course, this happens at Christmas when all the medical services are trying to calm down and I don’t want to be a problem, fingers (and buttocks) crossed 🙂
I was able to peel then Brussels Sprouts (properly 🙂 ) just sitting on the sofa. It needs two hands, but I could just about use the wrist on my right hand for the fine work and it was no different to how I usually do the sprouts. Phew, I managed to contribute a (very small) bit to Christmas dinner.
Fri 6-Dec – Tears for breakfast
Of late we have added to the traditional sausage rolls for Christmas breakfast a glass of “Sloe Gin + Bubbly” to get us started on Christmas morning. Since the “children’s” (at 23 and 21 they aren’t children really) Christmas with us was yesterday, we should have had it then, but we forgot. So, this morning we were doing it. I have to eat before 8am so I can take my cancer pills on an empty stomach at 10am. So, I told everyone it was breakfast at 7:15am.
Teresa came down around ten past to get the sausage rolls on and needed details of time and temperature. Tom and girlfriend were in bang on time (what do you expect from an Autistic son of an autistic????) and I had had a bad night.
All I could do was lie there in pain, crying because I felt the world around me pressuring me to respond and I totally fell apart. Poor Teresa had also had a bad night, had to pause the “urgent” job she had (the sausage rolls take 1/2hr or so from frozen and she knew she had to get them cooked in time for me to eat.
But there I was, a complete emotional mess, and she had to deal with her snivelling husband, feeling very overwhelmed. She sat with me, helped me sit up (I couldn’t move myself), Tom brought my cookery instructions and I gave Teresa the info she needed and slowly pulled myself together. I feel sorry for all 3 of them having to deal with me in such a state. The constant pain plus fear of death (accepting it doesn’t mean it’s not frightening) can leave me a mess and although I have always cried easily (I am very girly in that aspect, as in so many aspects), I make my previous incarnation look like the toughest macho ever. Nowadays I burst into tears over nothing!
After all that, I must now away to the loo and see if we have a bloody problem – no fun to read about, even less fun to have happening to you, especially at the moment! Phew it was Ok, I know I have to stay very careful on visiting the loo – doing what one has to do with absolutely no “straining” is very difficult and slow, but again you probably don’t want to know that either 🙂
Anyway, the day did get better. I was so relieved on Friday to see Teresa just “stopping”, gathering herself ready for our actual Christmas day
I told her, as I have all the way along, that I don’t care what we do for Christmas dinner (even though she has a significant bird in the fridge; bread and dripping would do me (well it wouldn’t, the thought of it makes me feel sick), but I daresay some of you are too young or even too posh to know what I’m talking about? It was a common thing in our house in the late 50’s (early 60’s) when I was a child.
Anyway, I stand by that, I don’t need Christmas dinner, it’s only us two on Christmas day itself, I can’t help (apart from doing the sprouts) so Teresa only needs to make Christmas dinner because it gives her pleasure and if it does, but not till Dec 2018, I don’t care, what makes her happy makes me happy.
That said, I do love Christmas dinner, but right now Teresa’s needs dwarf mine easily.
Teresa has spent almost all-day vegging and sleeping and I have encouraged her, I am hoping it’s going to help recharge her batteries, she has been running on empty of late and needs a massive recharge. I do what I can, but I am the cause of her problems so it’s hard for me to be the cure, try as hard as I do.
Sat 23-Dec – living with stage 4 Cancer
Have a look at this, I found it after writing this section, but you might find it helpful to read before you read my clumsy words “Thousands living with advanced cancer“.
Metastatic Clear Cell Renal Cancer IS fatal, it is only a matter of when. There are, today, drugs that can slow it down, sometimes pause its progress, even sometimes shrink tumors, but it cannot stop it and it cannot cure it. Today’s first line is Pazopanib, if that doesn’t work or stops working then there is a new first line drug about ready (nivolumab), after that there are a few other treatments, usually with worse side effects and no more likely to work, but which “may” be better for you because your body and cancer respond well to it for some reason.
To be clear, ALL the current drugs fail, it is only a matter of how long before they do, and for that you need “luck”.
I have to maintain an awareness of the realities of this. I could be fine for months or years, then Pazopanib stops working, other drugs don’t work and a month later I’m dead and yes, it can be that fast.
Feeling good is not a measure of being good unfortunately. Worst of all “progress” (or not) is based on the results of CT scans and they can only show difference after three months. So, every three months is “reset” time, and at any of those three-month windows the conclusion may be go home and get ready to die and you may not have had much clue of this beforehand.
So, every three months a sword of Damocles hangs over you.
The stress and tears in facing that, for both of us, is hard to imagine from the inside never mind the outside. There is no escape, there is no respite and yet …
My policy is to take each day and try and finish it saying “that was a good day” and anything that tries to get in the way of that during the day is not important, there is nothing more important than BOTH of us saying “that was a good day”.
So, the stresses I have seen Teresa go through this week have been especially tough. I’m hoping that there being just the two of us over Christmas can help her recharge her batteries. I have been, over the last few days, somewhat better than of late in terms of pain so I hope we can build up some of those “that was a good day” memories.