Month: December 2017

Sausage rolls, bottom problems and Christmas Phase I

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.

It’s Xmas day and blogs are in a Holding pattern

I have a weeks worth of posts from Sat 16th Dec, but they need Teresa to check they are in a readable approximation of English. She is a tad busy at the moment. Autistic me needs her to do it NOW (well actually Sat 23rd when they were finished), but loving husband understands she has far too much on her plate and I need to be patient. The following week (starting 23rd) is well in hand.

So, I am here, I am OK, not good, not bad, OK and I’m happy with that. Teresa is struggling and I am doing all I can to keep pressure of any sort away from her and encourage her to down tools and pause whenever she needs to. Right now she is asleep in an arm chair and the Turkey is waiting to go into the oven and it can sit there waiting for the next week if she needs it to 🙂 

So, the next installment is on it’s way but may be a few more days

Happy Xmas one and all

The Bean, 9:20am, Pendeen, Christmas Day

Christmas is coming, Tree Cats, Feed a Cold…Feed a Fever, 9-15-Dec-2017

Writing this has been difficult, my brain is like jelly. Don’t get me wrong, I can still think, but my hands are too slow to capture the thoughts and then they evaporate and I lose them (I think it’s the thoughts that evaporate although hands are just as likely in my scrambled universe). So, this week, the blog itself is one large example of how well (or not) I am coping.

Deck the Halls, Sat 9th Dec

In recent years, we have taken to decorating our Christmas tree on 1st December (early, by Teresa’s standards!), but we are somewhat distracted this year. Teresa fetched the tree from Polgoon this morning, but it’s much smaller than usual:

  • Because we don’t have Blossom to transport a large tree
  • Its usual spot in the sitting room is occupied by a desk that I can’t move!

We used the same stand as for the larger tree, but because it was designed for a bigger tree, tightening the 3 screws onto the base of the tree required some spatial awareness and visibility. Holding up the tree while doing it, and ensuring it was straight, was hard work. We both got rather stressed and a bit tetchy, but we managed it. There then followed some discussion as to when to do the lights (it was 11:30), we both felt it wise to ‘strike while the iron is hot’ and while I am still able to cope.

When we were out shopping the other day, I picked up a lovely long string of lights, but it turned out it was far too long (720 bulbs) and we had a lot of faffing to do to get it on the smaller tree. In the end, the excess was streamed across the dining room ceiling, but the important thing is, we got it done. Mind you, by then it was 1:30pm and I was exhausted, in pain and I just crashed. During the afternoon Teresa decorated the tree and it looks lovely.

Tree Cats, Sun 10th

Strictly speaking, this should read ‘cat’ singular, as it is only Barney who thinks the tree is there for his entertainment.

He started just batting a few decorations, escalated to standing on his hind legs and popping his head out from the lower branches, clearly working up to his pièce de résistance namely climbing up inside the tree, all the way to the top.

Teresa loves it, she coos and smiles and praises him and tells me it’s his tree as much as ours. I get mega stressed, Christmas trees are not for cats, I worry about damage, it’s all to do with my autistic brain fighting to defend its idea of ‘normal’. Of course, he has caused no damage. Of course, he gets himself out safer than he would if we tried to drag him out, of course he is cute, and yet, I want him dragged out of the tree and severely punished for not doing things MY right way. While I am not as besotted as Teresa, I do love our cats so I control my nature and he has been ok, but the stress has sometimes been the straw on Bean’s weakened back.

Cats, you gotta love ‘em 🙂

Back to work, Mon 11th

Today I started my “phased” return to work and had a pretty good day (about 6 hours, starting at 7am and finishing 5pm – although I wasn’t working flat out!). I’d had a headache all day, so we checked my blood pressure at the end of the day and it was 157/117, pulse 117. I panicked as that is high, even for me; of course, that meant Teresa was panicking as well. Since the doctors’ surgery in St. Just was still open (just!) Teresa rang and got to speak to a doctor. The doctor was not worried but arranged an appointment with my usual GP on Wednesday morning for a thorough review.  Teresa had a meeting at 10am in Pz but was OK to start late so we could sort out the BP worries.

Feed a Cold…Feed a Fever, Tue 12th

That variation on the old adage has always been my policy but lately, eating has been getting difficult because:

  • I’d really rather not bother, I feel nauseous all the time now
  • What I liked yesterday makes me feel sick today
  • I’m just not hungry

Yet, I know I need to eat and Teresa worries when I don’t, especially because I am usually a ‘feed a cold, feed a fever’ person i.e. the more unwell I feel, the more hungry I get. Neither of us has ever seen me uninterested in food before ☹.

A Bit of Furniture Shuffling

On Tuesday morning, the folks from work delivered a PC, a desk and a chair; they also removed building materials from the room I’ll be using as my work office; this was brilliant, but just standing and “supervising” left me exhausted. Not that they needed my supervision, you understand, but I felt so frustrated standing there while other people did stuff for me. It’s hard enough when Teresa does it, but when others have to… well, mix that with an autistic’s need for control over their environment, and it’s quite a struggle!

More pain meds, Wed 13th

Today I saw the GP. He was fine about my blood pressure but he upped the pain meds; I am now on 150mg Tramadol, twice a day. It helps with the pain but the cancer pills already leave me exhausted and with joint and muscle pain, as well as slowing down the healing of all the bits that were damaged in the accident, add to that the painkillers which also leave me exhausted, and the pain of the broken ribs which, even with the pain killers, hurt a lot. It is mega hard to understand how much of the awful I feel is down to the cancer itself, and how much is due to the broken bones, the painkillers and the cancer meds.

I hope that eventually the broken parts of me will calm down and I can just focus on fighting the cancer!

After seeing the doctor, I pretty much crashed for the rest of the day

A full day of work, Thu 14th

Thursday was a good day. I managed 7.5hrs work for the first time this week, although I crashed as usual around 8pm. I then woke at 10pm and it was well after midnight before I got back to sleep.

I really need help from Teresa to sort out the equipment in my office, but my son is here on Saturday so I will be patient, she already has too much on her plate. It is very frustrating doing the right thing, but it also feels nice to be caring for her and I focus on that.

The new bed is assembled, Fri 15th

The new bed for the annexe was delivered yesterday and it’s now time to assemble it before Tom and Tatch get here. It’s hard work. I have no strength or movement in my righthand side and Teresa doesn’t have a lot of spatial awareness – she even loses track of where I am sitting, as we work, and keeps bumping in to me. As to which way to turn the Allen key to tighten the bolts for the bed – it’s obvious to me, because you can only reach one side of the bolt it’s down if on the RHS and up if it’s on the LHS, but that’s me, I have to keep reminding poor Teresa which direction. It’s not her job to understand, but I’m so useless she has to take on tasks that I usually do because they are easy for me to do and make her life easier.

Postscript

Well I seem to have completed this and already 4 days into the next week, but as well as an early Christmas celebration with my son and daughter, next week includes a visit to the Oncology consultant so is likely to be a lot busier!

Nausea, Beer, Beds, Chocolate and Customer Service

It has been mentioned that it was nice when these came out daily. I am gathering them into weeks so that I only need Teresa’s support in editing once and not seven times.

Bed hunting and nausea

Sat 2nd Dec: for the past few months Teresa has been decorating our annexe and we’ve reached the point where we need a bed. It got its new carpet a month or so back and, since my son and his girlfriend will be staying in the annexe during their Xmas visit, we needed to sort a bed.

To be honest, I’d rather not stir outside of the house but if we are to attempt our break on Dartmoor on Thursday (see later), then we need to prove to each other that I can function in the world. Teresa could sort the bed on her own, but why should we waste time that we could be spending together?! She identified three possible sources in Truro, all next to each other, plus the new Waitrose she wanted to try out was across the road too.

So, come Saturday morning, I was feeling rather nauseous and decided for safety to grab my “sick bowl”. Nausea is one of the two side effects they give you drugs for at the same time as the Pazopanib, but this was the first day I had encountered it.

Bed hunting was a success so off we went to Waitrose, still queasy but ok. While Teresa parked I wandered around the Cornish foods unit. The smell was just too much and I left it. I found Teresa who was worried because, having parked the car, she couldn’t find me, and we started to walk around the main store. That was it; a minute in, I felt sick so asked Teresa for my anti-nausea pills, which I had also brought along with the sick bowl, and I went back to the car. I told her not to worry and to take as long as she wanted. I believe she struggled with that!

Took pill, then 1 minute later the pill and a lot of phlegm christened the sick bowl. Despite it being cold I felt very hot so opened car door and started to feel a lot better.

Teresa arrived somewhat worried and did her best to clean up aforesaid bowl and drove us home. Felt better by the time we reached Sainsburys in Pz so we did our shopping. I also felt like some chocolate and it worked wonders for my tummy.

That was it, I have felt nauseous every morning since and have found chocolate to be definitely medicinal, I will need to get a prescription for it ????.

Sunday?

It’s a blur. I think after yesterday I just hunkered down and played with FPGA’s.

Vampires on Monday

I was due a blood test this morning, however they had some difficulty getting the blood out of my arm! Apparently the blood was rather thick and slow – quite possibly a side effect of all the meds as it was fine until I started Pazopanib. A week later that arm is still bruised, so I also suspect too many blood tests and cannulas for contrast injection in too short a time. I’ll suggest a change of arm when I go for my next scan in a week or two and also suggest that they put the canula in early, so they can use it for the bloods as well!

After the blood test it was straight off to visit work, stopping at Tesco on the way to pick up something to eat. I have found that I know if I can face eating something just by looking at it, smelling it or even thinking about it. In Tesco I felt the pasta salad was OK, but wasn’t entirely sure so also grabbed a plain cheese roll as a backup (good idea as it turns out). We arrived in Penryn at noon. I told Teresa I would be 1 maybe 2 hours but was 3 in the end. I spent time talking to the team, to personnel and to the MD. By the end we had agreed how I would restart i.e. working from home, trying to go in once a week just to keep the people links working, generally playing it by ear.

I was, of course, in maximum performance mode and having a whale of a time, high on adrenalin. But after we left I started to crash and by the time I got home I just crumpled on the sofa and that was me done for the day.

Teresa was worried as I shut down on the outside when I crash, even if my brain is ticking away happily on the inside, (see Snorkling later), which means that to her I can feel very ‘absent’.

Physio and the long walk, Tuesday 5th Dec

Today I had my first appointment with the physio. I have been given some exercises to get movement back into the shoulder. At this stage the focus is on movement not strength. The physiotherapist did identify a lot of clicking in my right shoulder and suspects arthritis, oh joy! We then had 1.5 hours wait for our appointment with the solicitor to sign our wills, so we had a long walk around town which went very well and convinced me that Dartmoor should be fine.

Today the thought of the smell of coffee makes me nauseous so poor Teresa couldn’t get a coffee. Tomorrow it may not be a problem!

Oops looks like I’ve run out of Tramadol pain killer, need to get some more ordered before Dartmoor. Teresa rang for an appointment (since it’s a barbiturate) but they could do a 2-week supply without that and we can collect Thursday morning – perfect!

Wed 6th, Dartmoor and packing

Some time ago (way before the accident) Teresa and I booked a long weekend at a hotel on Dartmoor. After the accident Teresa wanted to cancel as I was so poorly, however whilst I really can’t be bothered with such trips, she loves them. After all she has had to go through and will have to go through with me, the least I could do was give her the trip. So I insisted I would manage – hence me seeing if I could walk for a while, manage the nausea, …

Tomorrow we are off, so time to pack.

Thu 7th Dartmoor

We got away 2:20pm arrived just after 4pm. Despite our concerns I managed the car journey, albeit with fairly bad back pain.

The hotel itself was a disappointment, it had clearly bigged itself up and was no longer the same place its website and reviews portrayed, but I was determined to try to make it work.

Teresa had to load and unload the car. I hate her having to do this on her own and the sooner these bones mend, the better.

Once in the room and unpacked, I went down to the bar and had my first beer (half pint) since the accident.

However, by now I had mega back pain and sitting hurt, on top of which I was exhausted. The evening meal was ok but not of Teresa standard. I had a mega un-comfy night and just wanted to go home.

Customer Service? Fri 8th

That morning Teresa told the hotel about the state I was in but they stood their ground and since we weren’t giving them two days notice, they were within their rights to charge for the 2 nights left (out of 3) and this they were determined to do. From what I can gather, from Teresa’s conversation, this was owner’s attitude, not that of the staff. They could see how poorly I was but the owner was hard, initially resisting any concession. In the end Teresa did persuade her to a compromise but it was niggardly and caused Teresa a great deal of distress. I think rules allow establishments like this to refuse a concession to those who may be trying it on, or those cancelling for frivolous reasons, but surely there should be some flexibility in a situation like this, especially as the hotel was owner-managed, not part of a chain. Well, we won’t be going there again and recommend anyone else to avoid it. If we had cancelled on Monday, when Teresa wanted to, they would have lost even the first night’s income (we were the only residents last night!).

As an illustration of what I consider to be the antithesis of this experience: some years ago, Teresa and I stayed in a small pub/hotel in Cambridgeshire. Its rooms were much smaller than those in the Dartmoor hotel and a single night cost £180.

During the night the timer on the hotel’s water softener had reset and the machine ran all night long, seriously disturbing our sleep. We mentioned it at breakfast, didn’t ask them to do anything, but when it came to check out, they didn’t charge a penny for the room. A year later, this is where we had our wedding reception – good customer service attracts good customers; hard and fast rules protect against bad ones.

As I didn’t want to leave Teresa without any happy memories of Dartmoor, I encouraged her to drive over the moor to Tavistock – a lovely town. We had a good time wandering around before heading home.

Teresa didn’t want to go out again on Saturday, apart from collecting the Xmas tree, so on the way we stopped at The Range and Sainsburys in Pz for some Xmas shopping. I was still in a lot of back pain but I wanted to support Teresa so we did the shopping together with me retiring to the car only when she was paying. I paced myself and crashed when we got home. Poor Teresa, beast of burden, doing all the fetching and carrying.

Despite these tribulations, we actually had a good day. We supported each other throughout and it reminded me of the team I always felt we would be, and to some extent have been, although  life has often got in the way.

This cancer is crap but I love the way it has allowed us to push everything that is irrelevant and unimportant out of our lives and focus on each other. Almost worth it!

Snorkling as a sign of life

Sat 9th Dec, pause, …, sorry about that, I don’t wear my sling much at the moment, but although I can now “two-handed” type, I just tried to use my right hand without a sling supporting it at the elbow. Without it, all the weight of my arm is on my shoulder (collarbone and ribs) and they do NOT like it. Putting the sling back on makes things much less painful!

So, last night I was wrecked. I settled for sleep around 8:15pm and went off very quickly. However, I woke around 11pm needing the loo (clearly the re-hydration is working) and Teresa was trying her best to be quiet sorting out the kitchen. When she heard me moving, which is a noisy affair as I am now sleeping fully horizontal and getting upright without the use of my right hand side and not being able to transfer any weight or force through the right hand side is difficult, lots of throwing the weight of my legs forward and grabbing the back of the sofa to “ratchet” myself up. Anyway, I said to Teresa that I thought I had gone off quickly. She said yes, I did, she knew because I was snorkling a lot. Snorkling is a Teresa word but I hope it is clear what it means ????. I have lived with three women all of whom always snored. Being a light sleeper, it drove me nuts. So I feel VERY bad when I’m told I have been snoring, but no, this cancer lark has great benefits. Teresa said to me, “I didn’t mind the snoring, it meant I knew you were alive”, how sad, touching and liberating all in one go ????. I think Cancer is an extreme solution, i.e. that your partner is grateful that you snore, but there do have to be some upsides to this!

This morning I woke around 4am but felt awful, couldn’t sleep but was mega tired and felt like throwing up. So, I re-arranged my pillows and sat up and half-watched the telly, lying there feeling lousy and girding my loins. Eventually around 7:30am I thought “enough is enough”, got up, made a cup of tea and ate my morning muesli. By the time the cup of tea was ready it was time for my morning pills. I spent another hour sitting there with sick bowl to hand; it didn’t get any better but neither did it get any worse. So, here I am in my office, my upstairs sick bowl next to me and fingers crossed. But enough two-handed typing, even with a sling.

Postscript

That half pint on Dartmoor was nursed for over an hour. Pre-cancer, my first pint rarely lasted more than 20 mins, sometimes only 2!. The GP now limits me to 2 pints a night to protect my liver which is having to metabolise all the nasty drugs I am taking. So, my drinking patterns must adapt.

As an autistic, change is difficult but wanting to preserve my life for as long as I can, trumps that and NEW rules to follow are developed quickly ????. Anyway, life preservation feels to me like a good thing to not want to change. So, now I’m here, …

Shaking, Showering and a Noddy Car, days 6-12

Shaking, day 6 (Monday 27-Nov-2017)

After a bit of a struggle, today I managed to get my blood pressure low enough to be able to start Pazopanib, the method chosen to deal with late stage kidney cancer. I checked with the Oncology nurses and, at 10:45, I opened the bottle and took the first two pills. I was shaking so much that I struggled to get them out of the bottle – this was really a physical realisation of the journey I am now on: that I will be taking this drug, or something else, till the day I die.

Once I’d taken the pills, I was fine, back to logical thought processes and getting on with things, but that 5 minutes was not a nice time.

I should say that, despite the physical reaction, I wasn’t consciously frightened; my logical brain was happy to get started, albeit worried about managing side effects such as high blood pressure.

My body, on the other hand, was clearly displaying a strong emotion that I wasn’t aware of. That is a classic aspect of autism i.e. I am almost never aware of an emotional reaction at the time of an event and if my logical brain isn’t aware that I am in an emotional situation, then I assume the emotion is for some other reason. Most often the emotion turns up hours or days later. Today, I did recognise my physical reaction at the time, but that is rare!

To try to help you understand, my hands and body were shaking, so there was a physical reaction, but I had no associated emotion at all, not excitement, not worry, nothing. If it wasn’t for the fact that I intellectually understand what is happening, that shaking would have had no meaning for me. Now this could be interpreted as “denial”. However, as this blog attests, I’m not at all in denial I am very realistic, it’s just that physiological/emotional consequences don’t run in lock-step with each other but each run in their own little world. This is not at all unlike PTSD.

Anyway, with the shakes over for now, it’s back to writing VHDL for FPGA’s. This keeps my brain ticking over and lets me asses how up for returning to work I am, at a physical level, after the accident – the answer is almost, but not quite.

The Noddy Car

Driving is certainly out of the question at the moment, I couldn’t turn the steering wheel, and I don’t have a car to drive anyway! More to the point, the painkillers contra-indicate driving and I do get sudden, unexpected bouts of tiredness. 

My employers are being very good and I will return to work with Teresa taking me in for a few hours once a week and the rest of the time working from home. That lets me work when I feel alert (often 5am or 6am till midday) and then to rest when I don’t – in the afternoons.

I have now accepted the insurance company’s offer for Blossom. It’s a bit low for this part of the world but it’s acceptable and we have other things to worry about.

I struggle with the idea of not replacing Blossom with a Landrover but that, I think, is not practical. Teresa hates the Landrover and has never driven it, so

  • She’d be left with a vehicle that’s useless to her
  • If there were any problems with her car, mine wouldn’t be a spare she wants to drive, and ultimately, she’s going to do more driving than me.
  • We need to conserve our finances

So, an economical small car (not dissimilar to Teresa’s Citroen Ladybug) and nothing at all like Blossom. For me, this is almost the greatest loss (well, it would be were it not for my limited life expectancy). Nevertheless, once I am able to drive again, it will be a Noddy car for me.

NOT Noddy means something that weighs more than 2 tons, can tow a caravan without noticing, and laughs in the face of a muddy field. Noddy means something that is economical, quiet and comfortable.

To a Landrover addict, Noddy is not nice language, to most people it’s just plain common sense.

Day 7 (Tue 28-Nov-2017)

A day of leisure and monitoring side effects (and FPGA work) but tomorrow Teresa and I are off to see the solicitor. We have been meaning to get around to making our wills for years (we did them before we married but our marriage invalidated them). The cancer has focused our attention and so we are getting simple mirror wills drawn up.

Sorting all the practical stuff is not easy, especially on Teresa, but this is the opportunity we get catching the cancer when we did. Even if I manage to do better than 2-3 years, it will still be good to have all this stuff sorted.

I can say that either removing the Naproxen from my pain meds (to help lower blood pressure) and/or my increased use of my right hand (e.g. typing this), means I am still very uncomfortable in the shoulder area, even with 100mg Tramadol and 1000mg Paracetamol twice a day.

This morning Teresa is off out for a couple of hours and she worries about leaving me. I will be fine and constantly re-assure her that she can see I am fine and I will tell her if I’m not.

Indeed, that has to be part of the deal to help her manage: I will always tell her how I am doing, whether I’m scared or happy, in pain or not, …, especially since David (her previous husband) died of a heart attack in front of her, without any warning. She worries about missing some sign she should have spotted in me (e.g. for the cancer) and about how I am now.

So, I am being very good at being very clear about how I’m doing and at times will even explain what a grunt or moan of pain means if she notices.

It is important for me to ensure that Teresa is “comfortable” constantly checking how I am, sometimes looking over at me every few minutes.

This is a partnership and we will get through it together.

Today is also Day two of the Pazopanib and, so far, there are no side effects, although I am sure they will build as I take more.

The Pazopanib has to be taken 2hrs after food and 1hr before, i.e. on an empty stomach.

I usually have breakfast around 6am, my pain meds are 8 (am and pm) and lunch 12:30pm. This means that the Pazopanib is set for 10am – nicely in the middle of the no-food window.

The Great Shower Challenge

It’s now 4:45pm and I’ve just had a shower. This is a two-person job. It helps to have a partner, and to also have shower big enough (just) for two. I can reach with my left hand but not with my right. I can therefore wash my hair and right arm and all the chest. I need Teresa for left arm, back and legs.

Same problem with getting dry.

The trouble for Teresa is that it’s cold at the moment and she gets splashed by the shower but is not exposed to the warm water, so she gets cold, whereas I’m not too bad.

It’s a long time since we last showered together, shame it took a major accident before we got to do it regularly – thank you Teresa, no greater love, …

Blood pressure scare, Day 7 (Wed 29-Nov-2017)

I had a bit of a scare last night when my BP hit 150/100 and a pulse of 125. I was worried as that’s not a good place for me, so I self-medicated with 8mg Candesartan, and that calmed things down.

This morning it’s off to the solicitor’s to do the wills, then to the GP to discuss BP and crazy high pulse, then back to Sainsburys PZ to do some shopping.

This heart stuff is worrying, especially the pulse as the BP medication doesn’t touch it and it was like that before the cancer drug started.

The solicitor was very helpful and raised the issue of Power of Attorney, a good question!

Then Sainsbury’s and found a lovely soft and colourful cardigan just right for me ????

Then onto the GP. He was brilliant, told me not to get so worried about BP as that was making it worse, but is adding a new BP medication XXX, xmg to be taken in the evening and has lined up some blood tests to keep an eye on things.

We are lucky to have a GP who takes an interest and is helpful and accessible.

A day of enforced leisure, Day 8, (Thursday 30-Nov-2017)

Teresa was off for a counselling related training day in Truro (Motivational Interviewing) and left me at home to fend for myself. So, not wanting to worry her, I spent most of the time wrapped up in my duvet on the sofa watching the TV. It is as indolent as it sounds, but is the exception, in general I’m trying to my keep brain active. But it meant I wasn’t tempted to do something “silly”, which Teresa worries about.

On her way home she stopped in Penzance to picked up some fish and chips (normally a fortnightly treat) but I see no reason to deny us now! Next she headed over to St. Just to pick up the new drugs (because they are not common and our dispensary didn’t have them on the shelf).

Fixing the graphics, Day 9, (Friday 1-Dec-2017)

Back to working on my FPGA after my indolent day yesterday, but first job of the day was to change the graphics card on Teresa’s computer. A week or two ago, after an update, Windows 10 reduced its resolution on her old graphics card and she hated how the screen looked with the lower resolutions. Apparently, her Graphics card is no longer supported by the manufacturer and Windows 10 decided recently to downgrade the possible resolutions.

The simplest fix was to fit a supported card, so on Monday we put in a £30 Amazon order. It was delivered Thursday and today we fitted it.

Not a simple task because I am very limited in what I can do physically and getting access to the computer and cables was a mess. But between us we got it sorted, the cables are now a lot better organised, the new graphics card is in and the resolution is sorted. One very happy Teresa and hence one very happy Bean.

Right now, Teresa does a lot of the work around here and is constantly doing stuff for me. It was so nice to be able to do something for her.

Yesterday, the GP updated my sick note to “phased return to work” so I can get my brain back into gear (which is why I have been doing all the FPGA work to stop from turning into a vegetable, lounging on the sofa). This was my choice, the GP asked if I actually wanted to return to work at all and it seemed to me that I could get “signed off” for ever, but of course that’s not the same as getting paid for ever and anyway, I love my job and since my company will let me work from home, why not?

So, this coming Monday we’ll go in for that blood test, then off to Penryn to make arrangements to get back to work. Tuesday it’s the physiotherapist, to see if we can sort out all the shoulder joints that are really angry with me for not using them for 6 weeks!

As Teresa says, the accident and broken bones is the visible illness and the one everyone notices, including us. The cancer is invisible apart from the drugs and at times it’s hard to remember that how crap I feel at the moment is down to the accident and pain killers NOT the cancer or cancer drugs.

It really does f*ck with your head!

Postscript

If you don’t understand the words “FPGA” and “VHDL” then you don’t want to, they belong to the deeply techy part of my life that I try to protect the world around me from. Think of it as writing software for electronics instead of computer chips and now you are probably even more confused!

This blog has been much more of a diary than a “story” because, having got past the spike of the accident and the spike of the diagnosis, life does become more mundane. The outcome remains the same, the fear is the same, and yet what is happening starts to disappear from other people’s horizon. Until I start looking “cancer” ill, it’s impossible to believe it is a serious as it is.

Quick update, when the next instalment comes out, I’ll be reporting that the side effects of the cancer drugs are now well in evidence, oh joy, sick bowl in Waitrose car park anyone? ????

The Bean, At Home, Sun 3-Dec-2017