I let them know radiotherapy had given me the morning slot so I neednt leave the ward on Tuesday. Damn nice of them to zap me early in the morning ahead of the chemo. What they didn't appreciate was my only steps on Tuesday will be between the wards, but I can always get up early and pad around the block my way.
I was up at 1am this morning for Weetabix on the back of being out at 7pm. The tiredness at the weekends is legend now. If I have been golfing or at the football I've blamed it on that but the truth is, this torturously tough treatment is tiring. It's designed to wear down the cancer and if you still have a will to live it isn't working. I've been playing my role well, like Ronaldo, an "only an excuse" actor. I miss my cue, forget my lines and definitely have an opinion on where the script would be better off going. Truth is I know where it's going, I'm just performing my distractive therapy on myself. I'm never sure if it's my alter ego doing it to myself or I'm doing it to my alter ego but we are here at the beginning of October and I've been playing the game since May. I see things differently, I always have.
Jackie is plain exhausted with it and I'm sure that's contributed to her illness. From the word go, or the 'not saying a word go', I've tried not to share it too early as it's not her kind of gig. I think those magic words, "When were you going to tell me about the lump in your throat?" manifest in June so at least she missed 4 weeks of the last 23 weeks but she has been aware for 19 of them. That's a long time in anyone's game. Too long for sure and I don't envy her. Like most people a lack of control over the outcome can result in frustration, hence I felt the need not to share early on.
We used to tell 5 year old Caitlin that "caring was sharing", to which she replied "sharing was boring". I took this on board when I decided just to blog about it and then if pals picked up on it all good and well but otherwise it's just another journey and I'm not really an oversharer. Deadbeat seemed the perfect place to over share. It lets people pick up, put down and throw away without worrying about recycling.
I remember laughing with Jackie and Caitlin saying it's the first time I get to be the patient and to be fair, I'm pretty chilled by it all. With only two weeks until the end of the treatment and another 2-3 months of recovery ahead I'm still feeling pretty lucky. There are doubtless pot holes, land mines, strong headwinds, sewer pipes bursting and people randomly bombing me ahead but show me a place in the world where that doesn't happen. That, sadly, is life, living with it, is also life. So are all the joyous steps I have discovered, re-discovered and reminded myself of.
We will definitely be going over to Ireland in June for the strip and dip. Theae trips were huge for Jackie, the community of women are just phenomenal and it's a wake up call as we should've been grasping with both hands after COVID slipped past.
We can sit on our phones or watch TV for hours on end, yet to what end do we pursue this. As previously mentioned if I get the all clear in January and when the feeding tube comes out we will be on the first plane to Málaga and then along to Almenucar. I'll be swimming every day and we'll have lunch by the beach, in the town in restaurants where the food has jumped out of the sea onto our plate. Ah, yes, the pain was a bit much this morning so I had a wee 2ml of the morphine.
Enough of the nonsense but we did have a good conversation about how tough it is when you have no control in a situation. Jackie suffers from white coat syndrome a recognised condition which results in high B.P. when taken by a doctor. In this syndrome I believe the real fear is this lack of control and being judged. Some people like being measured others feel it's a grossly unnecessary invasion of privacy, an examination where the results carries too much significance. I'll revisit this topic as it was one of my favourite training tips. I introduced more double checks to make sure we got 100% right. It split the office as half didn't like being pulled up when they'd made a mistake and the other half said they were delighted someone checked their work before their mistake became costly. They got their work back and fixed the 5 out of the 100 and got 100%.
It split management as well as they couldn't understand why I thought perfection, when attainable, was easy to do as it also ensured all the way through the process we had concrete blocks we were building on not sand and they just thought it was excessive. We were the cheapest at settlement and #1 in performance. They thought I had a secret magic trick I was performing but no, it was just all the team who bought the process, proved it. Those who didn't were eventually won over and one of my favourites left. He was a great footballer but a terrible manager. He liked to empty the tank on the park and gave it his all. He loved being busy at his work and doing it all and getting 64% of them right but 100% completed. I asked him to get 55% done and all of them right. He just didn't get it. He'd rather be told he had to redo 36% manually which took 40 times longer than if he just got them right. He said he didn't really like numbers and wanted to open an art gallery. I said, "Joe, what are you waiting for" and before too long he left, he was off to Sheffield to open his gallery. I was so chuffed for everyone, him, his team, the wider office and clients. I must check it out as it's been 20 years now.
The Camino Frances to Santiago de Compostela was the first time I really appreciated how stoic my values were. I could see blue and grey sky but neither raised me to joy or despair, they just were. One path led to a dry version of me arriving in town while the other brought a soaking me. I was more indifferent the closer to my chosen destination as I'd chuckle, bring it on. Simon and I ended up in a superb hotel in Astorga for that simple reason in 2007. Necessity, or St Jacques, will always both dictate and provide. We had a great room, a bath and only two snorers. It went from being a terrible to a terrific day, such a simple solution.
I think I'd always been a control freak with a sense of stoicism and it was just when I saw the control freak receding and the stoic kicking in that I realised how important the doors in my life had become.
When I was working I always talked about control what you can and manage what you can't. Recognise early on your frailties and make sure those around you know them. No suprise I came out as a drunk on my 20's. What was a suprise is how many people didn't. I worked and drank with a lot of alcoholics and whole most of them were open some were dark dark cheaters. They cheated themselves their families but more importantly most people knew so their society just laughed at them. We joke all the time about cheating at golf. Why would you knowingly write a different number down. Worse still, why would you argue that you found your first ball when you clearly didn't. Golf has few cheaters and most players know them. They are ridiculed the world over and the funniest are clearly the ones who do it when the camera is rolling. I must mention that one day if I find myself drawn with one. I got weighed today and there was no cheating that 102.9kg. I'd just got it up from 104 to 105kg so I'm on the naughty step.
Some personal practices will make doors open, doors you have no idea even exist, never mind you might wish to open. Some are more direct, like the Oral Olympics. I've stretched my mouth every which way and it's loose. It's sore, sometimes very sore but I can still swallow and open it wide enough to squeeze the cheesecake in. These exercises are designed for a reason and while I get very tired doing them, as I do eating, sometimes even breathing, it's protected my swallow. I know a few people already who have been on shakes since week 2 and we have no idea how our bodies are going to react to the physical abuse the treatment dishes out. For some, the exercises have been too tough with the pain elsewhere, for others they've just not been able to do them. I think this about my teeth. I'll be reading this in 3 months time as my jaw shows signs of wear and tear following the treatment. I'll get asked how much I used the toothpaste and mouth guards. I'll humbly accept not as recommended. I've four more weeks to make amends but I literally have been so tired. Some people have been very sick so find it hard to keep food and fluids down. My daily ice cream has largely landed on my throat within an hour of radiotherapy. On Friday I had to go home and I felt the difference by the morning. The cooling effect and the nutrients were a big loss, moral of the story is ice cream is good.
After my session on Monday no such mistakes were made. It's so sore the throat just now freezing it is worthwhile. Anything that reminds me to swallow is worthwhile and psychological pleasures can never be ignored. When I got home I had no interest in anything. I tried to eat an avocado but somehow it's now spicy. It's been my benign go to, alas no more. Unlike the boys I didn't have the weight of the world on my shoulders.
Jackie made a stew and my tatties from the allotment went to soup. I tried to revive them mashing cream and all I had was potato and cream soup. Like all things tasteless. The meat, veg onions all tasteless and a pattern was evolving that only sleep could help, so sleep I did.
I awoke for a midnight snack of Weetabix and had more at 7am before heading to the western via the botanics.
The bus is bang on time, that was perfect. I'll get a 20 mins walk to wake me up before going to sleep with the chemo. If memory serves me it's flush chemo flush today. IV fluids for 22 of the next 24 hours. You start out clock watching then get distracted by sleep.
5 hours later and it's lunchtime in the holding bay. I've seen the nurse and done all the vitals with the canula, listened to the Deadbeat tape and now I've seen the doctor and a student doctor. We've gone through the treatment, inspected the throat, discussed the journey so far and also the pain management side. I forgot to mention the main chemo side effects which was the hiccups. I did remember to mention tired and dehydrated. The chemo is due to arrive about 1.30pm and that'll be when the beds get freed up in the albergue as the residents from yesterday will be finishing off their flushes and beds being stripped. It's very like an albergue.
I forgot about the great mexican stand off at the lift this morning. I was getting out at Ward 3 on the 3rd floor and a patient on a bed was being pushed in. There was also a nurse with a laptop on an upright trolley. I squeezed by and disappeared as instructed after standing like a lemon outside the lift in a wee gap. I find it so funny but I just freeze in these situations.
So back to sleep again and wake up when next asked.
I was really chuffed as the canula went in first time. It's especially important with the chemo to get a good slot. I was suitably warmed up and with the aid of the heat cushion it was all good. A few more questions, a lot of thanks, praise, grovelling from me and then the weight, down again to 102.9, oops.
It was quite busy in the wards so we were in the reception room with our machines for a good bit of time before treatment started about 2pm. My buddy from week one and her husband were off as they had found a room for her but the boys remained. I laughed inside thinking St Jacques always provides and I said to the nurse I'd be fine in there if need be.
I was there for my pre-chemo flush and then got moved to an outstanding room about 6pm.
St Jacques does indeed provide. An ensuite, TV it reminded me of the Art suite rooms overlooking plaza pombo, near the arch, Jackie and I stayed in Santander.
What then followed was the usual, 4 hour, 6 hour, 2 hour flushes. I waited foolishly until the 6 hour one at 2:45 before sleeping. I forgot at 6am the hospital cranks into life with fresh water, followed by meds, followed by B.P. and vital statistics , then breakfast.
Even worse I figured I didn't need sleep as I've rested all of the last 36 hours judging by my steps. Ha ha I laughed when I got off the scales at 101. That was after most of the flushes.
I'll be on the naughty step if nutrition find out. On the plus side I'll get down to cafe Gallo for a double scoop and start the process of bulking back up. After going down to the garage to get some of those clothes from an earlier era, at this rate I'll be wearing the life support nappy. For those who have just eaten I would recommend not clicking on the pages link to Life Support. For those who can stomach it, fill yer boots. It was 40 years ago the single came out, that launched my career in WoodMac, well I had to sell them somewhere.
So many great staff here. When you're in your bed and have time on your hands explaining why you think they're so good and professional. I admire them so much so registering what they do is so appreciated by you as a patient on a journey may bore them rigid but I never tire of it. I am so grateful to them all.
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