Letter from the North

Cancer, poo, they are never far away – 13/20-Oct-2018

 

This is Burli laying in the Sun, with Jane disdainfully ignoring him (so she gets her head chopped off for not looking at him 🙂 , or to be fair for spoiling the shot! 

It’s actually Sunday morning, on the 18-Nov-2018, I am over a month late with this blog and just returned from a Diarrhea trip, upstairs. 

Life is getting VERY much more difficult and I am trying some changes. 

So, the dreaded  Diarrhea and its friend “lets toss some constipation in there just for fun” is trying to run (ruin?) my life, the entries here will not reflect the difficulty because I try to keep it light hearted but it is draining, worrying about never being more than 30 seconds from a toilet and yet needing to get out and about. It needs planning. Being VERY aware of foods that can trigger it (10 grapes is better than a ton of Senna for clearing out my insides!) 

The fatigue, god I wish I could help you understand how bad it is because “you look so well”, yeah right, I’m a good actor because sitting slumped over my desk or steering wheel is NOT a good look 🙁  

I woke this morning, as I do every morning around 6am, been doing that for over 50 years and doubt I’m going to stop- now. But in the past once I sit up, I am raring to go. Now, it can take an hour to find the energy to sit up and when I succeed, all I want to do is lay back down again. EVERY step I take from then is ploughing through treacle and looking forward to my next sleep. 

I get through anywhere from 12 to 14 hours of sleep a day around 2 of which are after lunch. 

How do I manage a 37.5hrs a week full time, intense job? Plus, oh yes, I had this brilliant idea of studying part time for an MA in Autism studies. Oh, and the minor acts of living, you know breakfast, lunch, getting washed, dressed. Fetching in some wood for Teresa, doing some DIY for her. 

Fun, who gave you the idea that you would have time for any of that malarkey. 

The drugs, not the cancer, the drugs that are keeping me alive (for now) are the culprit. Yet without them, well there really is no point. Still, I do sometimes wonder if I should just accept the cancer, stop taking the drugs and let this be my last Xmas EVER!!! 

I fight that idea, but it’s getting harder and I’ve only been on these drugs for a year. 

Cancer is tough, whether it’s the short term but violent abuse your body takes during Chemo and Radiotherapy in Cancers where that works or this daily grinding you down that “holding it at bay” drugs that cancers like mine require. It’s hell, shit, whatever deeply nasty word you want to apply. 

Oh and my poor carer (sometimes more than being wife 🙁 ) Teresa gets to bear the brunt of all my self-pity and struggles and also needs to have her own life. 

So, maybe, I can at least force myself to release these weekly and on time, so this is the first, I’ll release two at the time till I catch up and then, … 

Do NOT tell me I don’t need to, I DO need to, the last of these will be when I am too ill to type or dictate any longer, till then, please don’t wish me dead by telling me these don’t need to be done! 

Teresa will not edit them, the first she’ll see them is when you do. The English will be wayward at best and often misleading, in that what I am trying to say and what I do say are not well matched and they WILL be politically incorrect for two reasons. 

  1. I often can’t tell when I am being politically incorrect 
  2. I really don’t care, if you can’t see beyond what you read to what I mean, then don’t read me, I am doing my best here 🙂  

Am yes, I am sorry if I sound aggressive, that’s not what I am, it’s just I don’t know any other way to show “intensity” of feeling 

So, here we go, I dragged myself out of bed at 6:30am, had breakfast and here I am typing away, wind back your memory for a month and … 

Sat 13- Oct -2018   

Should have had flu jab last Saturday but went this Saturday, the waiting room was full, but it (the jab) was quick and painless. Why you may ask did I go, well I have had free Flu jabs ever since I had raised blood pressure. But now the Cancer drugs can screw up my immune system (see Monday) and so I am particular at risk from flu with appallingly slow recovery (including fatal)! 

We do however need to be careful as it’s not unusual for me to get flu like symptoms after vaccination (in previous years), so I must expect at least that and likely worse reaction this time around, oh joy! 

We had toad in the hole today to give my body a second day to recover after the lasagne before having it again (it’s too lovely not have!). Given constipation is in full (lack of) flow today, maybe that was a bad call. However, gorgeous toad in the hole – Teresa’s new recipe is wonderful. 

Sun 14- Oct -2018   

Constipation all day, so looking forward to the Lasagne test 

Lasagne – took a while, ate at 6:30pm and around 9pm we are on the move :-). Bit of diarrhea, then solid normal and then a bit of diarrhea (all in the one visit 🙂 ) 

So, it is the Lasagne that does it, given that the Consultant said that Fibre can trigger it (hence peel apples, …) we suspect the Lentils in the lasagne is the problem. Teresa wants to delete them, but I like them in there so will just “remember” to take the Loperamide an hour or so before – that’s worked other times and is most definitely what I will be doing on Xmas day – all that veg!!! 

Mon 15-Oct-2018   

Confirmed, no longer blocked also no diarrhea either, almost normal poo (for me) 

Always been allergic to Elastoplast – itching afterwards for a day or two. However, when giving or having blood taken their little plaster is only on for a few hours so it’s not been a problem. 

Thanks to Paz it now is most definitely a problem! The photo shows a ring of “spots” just where the circular plaster was after I gave blood nearly 2 weeks ago. Itches like crazy and anti-histamine cream only dulls it for a few hours. 

If you wanted simple evidence of just how nasty these cancer drugs are – then here you are, even the most basic of the body’s immune type reactions are compromised 

And yes, I did check with the cancer nurses and it was no surprise at all to her! 

Tue 16-Oct-2018   

Office as usual. 

I’ve commented before on Bill Turnbull and cancer, there was a new article on the BBC News Web Site today, “Bill Turnbull: Cancer chemo treatment was ‘unbearable’.

It triggered some thoughts, so whilst the “quotes” are from the article, my comments are NOT about the person who made them, I hear these sorts of comments in many places. 

… has described dealing with cancer every day as “relentlessly boring” and admitted he asked doctors to stop his “unbearable” chemotherapy. 

This bothers me, the treatment is awful and you do need to consider quality of life. However, you also need to consider those around you as well and how it affects them. Accepting that “chemo” is the new “normal” and finding ways of coping is an important message for a lot of people, “giving up” is not a great one. 

“It’s the fact that having cancer is so relentlessly boring. You go to bed at night thinking about it, and it’s still there when you wake up. It’s there all day, every day – a fact of life you have to get used to. And it’s a massive pain in the backside.” 

Yup, it is and it is for a lot of people, many of whom just get on with it, giving up means signing an early death warrant and cancer is rarely cooperative if you “hope” at it!  

… cancer has spread to the bone – across his pelvis, hips, legs and spine – said of chemo: “Each round felt worse.” 

Yup, its metastatic, life limiting, terminal, welcome to the club, it’s a bugger and no mistake! 

… lost his sense of taste, and some days could only cope by lying down to wait “for the feeling of crushing fatigue and nausea to pass”. 

Yup, but you learn to adapt your diet, pace yourself, nap when needed, in the main it can be managed, there is a lot of help out there if you need it. 

By round six, “it felt as if the chemo was now taking on a life of its own, like some malevolent gremlin”. 

It does, to this day I have NO impact on my life from the cancer it’s the treatment and it’s many and varied side effects that have become my new life, but I try to have as good a life as I can, more for Teresa than myself if truth be told, she deserves that from me and so do my children. So, when I feel like giving up (and I often do), I think of them and I battle on. There will be a time, and we will all know when that time comes, but it ‘aint here yet! 

… said the disease has stopped spreading but “hasn’t been beaten back entirely”, adding: “We’re at a stalemate.” 

Cancer doesn’t do stalemate, we are not an equal and opposing force, it’s just having a breather and gathering itself for another onslaught. If you’re lucky old age gets there first, if you’re not then you had better be ready for when it bites back, it is stronger than all of us. Certainly, once the disease has gone metastatic as there are so many places the cancer can sit and hide and bide its time. 

I WILL die from this disease, so my life is buggered, my focus is on the lives of those I care about and giving them as good a quality of life while I am still here as I can. To me that makes coping with the crap easier. I guess for others it’s different, but for me they will be the survivors, I want them to have their best memories of me (cue tears form Teresa as she edits this) 

Wed 17-Oct-2018   

Constipation is back but also Lasagne for tea so hopefully it will ease 

Indeed, it does and things (aka poo, what else?) almost seem normal 

Thu 18-Oct-2018   

Poo IS almost normal but now worrying we are heading back on the constipation end of the pendulum 

Fri 19-Oct-2018   

Hmm, almost normal poo, but still worrying as on Ondansetron today (for nausea but its side effects include constipation!), however Lasagne for tea this evening so fingers crossed the two will counteract. Tomorow hope to go to Falmouth and that is the day after Lasagne and also not Ondansetron so not sure what the poo status will be as we travel out and about. Something that can cause you to stay housebound is the fear of unexpected poo. I get that but I know I can just about control it with drugs and making sure I know where loos are and how far away I am. 

Teresa is still decorating her office and as she is using a steamer to remove wallpaper near a mains socket, we wanted to turn off the power. 

Now, that should be simple, turn off the upstairs breaker and accept power upstairs is off for the duration. For her to have power just run an extension from downstairs. 

Hmmm, never that simple in this house. 

  1. There are TWO circuit breakers for upstairs power (not lights), one of which doesn’t seem to control ANY upstairs sockets and one does. 
  2. OK then turn off the one that does, great but that one ALSO switches off the sockets in my office (which is downstairs) and also the macerator loo (downstairs and next to my office so no surprise. Also, it takes out the sockets next to our TV (but nowhere else) which is also the best place to plug in the cable from upstairs. 

So, we need three extension leads, but OK sorted. NO, not quite, the internet to my office goes via a hub that is not accessible at the moment and also powered from a socket that is on this “up” circuit breaker. 

So, also had to run a new Internet cable from new office to old one (where the main Internet comes in) 

Still, all now sorted and Teresa busy steaming away, but the electrics in this house – a nightmare! 

Oh, and got an appointment with an Insurance Certified Orthopaedic Consultant for him to confirm that I didn’t just heal up in 3 months from that accident a year ago. Until he reports there is no compensation unless I am willing to accept peanuts and I am not. 

Not only can I not lay on my back and right-hand side because of the damage, laying on my left is a problem because it causes me to feel a need for a wee during the night (not the day). Is that because that’s the side with tumour on the kidney itself? Is that because I have an enlarged prostate (that they don’t care about because it won’t kill me before the cancer does), I don’t know, but it makes sleeping difficult and painful! 

Whilst the cancer/prostate are NOT the fault of the muppet driver that smashed into me. The damage to my shoulder and Coccyx ARE and he took out 2/3 of my options for a good night’s sleep and that’s not on! 

Postscript 

It’s interesting, what do you do when you are given a few years to live 

  • Option A, do all those things you wanted to do but never got around to? For me, that’s a problem because I won’t be around to remember that I did them, so why bother? 
  • Option B, just have fun, yup and I agree with that, but that may obstruct C 
  • Option C, lay down good memories for those left behind 

I vote for Option C with as much of B as is compatible with C and A with anything that’s left. 

Others will disagree, but it’s how I make staying alive when it gets tough (ok, it’s already tough, even tougher) make sense. After all, if like me, you don’t believe in life after death, once you are dead all that is left are the memories that people have of me and of the deeds I have done, I’d quite like those memories to be good ones, how about you in your “healthy” life? 

Week 2 

Sat 20- Oct -2018   

We went to Falmouth, I sat on my buggy looking out over the harbour, as I always do 

It was a nice trip out 

We managed to get some Christmas bits 

My shoulder was bad – coughing, sneezing, nose blowing, all hurt, sometimes even just deep breathing! 

A nap, obviously, once we got home. 

Sun 21- Oct -2018   

Did a small walk and was exhausted. Later on we moved some draws in preparation for considering a wood burning stove in our Annex (a project that we WILL finish before I die (we hope 🙂 ). 

That was my DIY contribution to the weekend 

Skipped afternoon nap as it’s starting to feel that with the cooler temperatures I can cope better, we shall see!!! 

Was actually well awake around 9pm and felt raring to do great things, I recognised this may well be the manic phase I’ve noted earlier, discussed with Teresa and went to bed instead, fell asleep pretty quickly. Funny how the parent becomes the child even if I am being the parent in recognising tired == manic (note: == in maths means “the same”, I won’t tell you again 🙂 ) and sending the “child” to bed! 

Mon 22-Oct-2018   

Decent night’s sleep and at work at home with no apparent consequences to yesterday. Teresa and I agree that the heat of the summer took a lot out of me and made the nap time MORE necessary, will try not having it for a while and see how I go. Brain work (for my job) may well still exhaust me, time will tell, … 

Tried another “no afternoon nap”, didn’t work so well today, ran out of steam around 5pm 

Tue 23-Oct-2018   

Went to the GP, got a poo softener instead of a full flush laxative (like Senna) as it more correctly deals with my needs when I have constipation. 

Yup the rash on my arm following the allergic reaction to Elastoplast a month ago will not respond to anti-histamine, needs a steroid, got cream for that and it’s already making an impact 

On the subject of that scan report on my lungs (my main reason for going), I showed the GP the scan report, he was not impressed the Oncologist is doing nothing about “suspect” bacteriological or fungal infection in the lung (as opposed to boring old cancer!). If it is an infection, waiting 3 months to treat is unacceptable (I agree, that’s one of the reasons why I went to see the GP). 

So, he’s written to him asking for action, also he found a letter from the Haematology consultant to my Oncologist wanting a test to find out why I have elevated Haemoglobin (drugs/cancer or some other nasty!). The GP is not prepared to wait for the Oncologist to request that so he’s going to do it (and tell the Oncologist)  

The blood test for that is next Tuesday morning, if it’s not “nasty” they will just keep taking blood out of me (i.e. diluting what’s there) until it goes down to their preferred level! Apparently, there’s a regular Friday morning clinic for this purpose at Treliske! 

So, will wait till we get back from Plymouth on Friday and contact the Cancer nurse to see if we can’t get the two ends of the conversation to talk to me directly and find out what the plan is, both for the Haemoglobin and the Lungs. 

Oh, and the usual way of finding out if and what a lung infection is by Bronchoscopy, however that is somewhat trickier when trying to access the top of the lungs where my problem seems to be as it requires a U turn, down the throat and back up to the shoulder area! 

Tried an afternoon nap but couldn’t sleep 

Wed 24-Oct-2018   

Rubbish night, got to sleep by 10:20pm (ish), woke around 2am and that was that I am hoping I manage to nap later on this morning.  

Why poor sleep, I do know, I am extremely worried about my lungs, far more than anyone else (apart from my Doctor) seems to be (Teresa is, of course, worried because I am, but I suspect she has a more positive outlook on the possibilities) and when I lie down my breathing is “crackly”, but NOT when I sit or stand which causes me to worry that the tumours in that area press on something they shouldn’t when I lie down – hopefully not as the CT scan is taken lying down so should show it, but, … 

Oh, and this whole trip to Plymouth to do with the “compensation” worries me, it’s dragged on for over a year now (at the time of editing, still another 3 days at the time of writing) and I just want it out of my life, it shouldn’t be such a worry when I have far more important things to worry about but 

  1. The B**** should pay for what he did, the pain I had, the pain I still have and the poorer quality of life I have in what is a rather limited life expectancy (unless some miracle hits me) 
  2. That money will help Teresa and I do stuff that otherwise we would have put off to a later date and we may not now ever get that “date”, so “do it now”

Blah, … 

Didn’t get a nap this morning, so mega tired 

Pain free journey to Plymouth, checked into our hotel in Deriford, had a quick snack and drink, the most bizarre Croque Monsieur that you have ever seen, Teresa should be along in editing to explain how bizarre it was, … 

Went to see the Orthopaedic consultant at 5:30pm (hospital 5 mins up the road from the Hotel), we were there 5:30pm to nearly 7pm. He seemed thorough and a lot more switched on than the Court Appointed GP we last saw.  

I told him how much the solicitors had offered originally and he considered that to be derisory (whiplash sort of money) so I’m glad we stood our ground and didn’t just accept what they offered (which is what I felt like doing so we could move on) 

However, time will tell and we need to see his report and then what the solicitors come up with for a settlement. 

We got back to the hotel and went straight into eat, it was considerable better than the “Croque”, being XXX tales (some sort of fish’s tails, maybe crayfish?, but that’s my memory and English for you) and chips and mange tout. It was a classic impersonal but very smart business man’s (persons) hotel. Corporate and functional. We went to our room and went to bed at 8pm! 

Thu 25-Oct-2018   

Up and out of the hotel by 7:45am, found the car park after a bit of effort. Unloaded the buggy and arrived at the place Teresa show for breakfast at Montys Café and though there 10 mins early, the person serving opened up and let us organise ourselves. 

Classic English breakfast and so “pogged” we barely ate for the rest of the day. In my case that was an issue because my body seems to prefer little and often. 

We would definitely eat there again. 

Still we had breakfast, went into town, found a place for coffee to meet up with Daughter and Wife #2 (other Teresa), saw a “Yours” across the road, my favourite, Large Ladies clothes shop. Did some retail therapy, how could I not? :-), Incidentally, that was a newish shop in Plymouth and I discovered they are opening one in Truro, YEAH!!!

We then into TK Max for Teresa and then Café Nero to wait for Kat and Her mum (who were staying in a different hotel in Plymouth). 

Kat arrived and needed help pinning her dress to her bra to ensure the latter didn’t show. So, it’s me, not either of the two Teres’s that gets asked to do the job because she trusts my spatial/mechanical judgement more. What the folks in Café Nero thought of me and Kat standing there with me fiddling away with the side of bra I don’t know, but I suspect having the two Teresa’s there and me in a frock probably confused them enough not to worry about any form of “assault” taking place 🙂  

Teresa (the current, aka wife #3 one) and Daughter went to Plymouth Guildhall to collect tickets and for her to get “robed” 

I stayed in coffee ship with Teresa #1 (wife #2) and nattered. We may be divorced and at the time it was tough as divorces often are, but we are friends nowadays so “reminiscing and discussing our daughter was no problem. My Teresa returned and we had a drink then went back to the guildhall, met with Daughter 

and then I left the Teresa’s to go and sit down and I headed back into town while the ceremony was on. 

Why wasn’t I there, well, 

  1. My daughter finds me a distraction, how I dress, being in the buggy and it was just less stressful for her. I REALLY understand stress!
  2. I would find being trapped in a hall full of people very stressful (I find a small group stressful never mind 100’s of them 
  3. Teresa (ex) is her Mum and should be there, Teresa (wife) was step mum to her from her early teenage years onwards (as she lived with us) so was just as important to her (albeit in a different way), I was just her Dad 🙂  

So, I went over to M&S, had a good mooch around, a struggle with access to their disabled Loos, how do they expect me to pull open a door whilst sitting in the buggy! I need others to help! 

Then Tea and cake in the café and a read and then headed back to join them all at the “wine” reception after the awards. 

Bit of a tricky process getting the buggy in through their disabled access (door on the side then a lift) but worked it out with help and it was a heaving throng up there but current wife Teresa found me, then she found other Teresa and later on Daughter came and said hello.

The laughter in the pic (nice to see) was because the Gin (her favourite drink) was Clotted Cream flavoured (another hit), what better?

After she had returned the robe, we went for a coffee and cake to Costa in Plymouth for a “wrap up”. 

Teresa and I headed back to Angelique, by the time we got there I was down to one light on the battery display, so running very low, but those batteries handled some hills and a full day out, so well done to them 

We came back over the Torpoint ferry (about 6pm,) because it’s more fun, but they only had two ferries running so a 30-40 minute wait. 

Stopped at Cornwall services for something to eat and a strong coffee (for me to help cope with the last bit of the journey, being pretty tired by now). 

Journey no problem, home by 9:45pm. 

Crashed into bed, we watched Wednesday episode of Strictly Take #2 and both went to sleep – me on Sofa, Teresa in our bed, as usual.

Fri 16-Oct-2018   

Up around 8am, reasonably refreshed, however it won’t last long! 

It didn’t the day was wash out! 

Postscript 

So, there you have it the first double edition, released on a Sunday morning trying to catch up. I find it interesting in this edit how much of what I talk about in the introduction was being written about in the content. I am really in two minds Lots of pictures this time, there won’t always be, I just had them this time so popped them in.

  1. I cannot recommend the drugs that are keeping me alive highly enough, they are giving Teresa and I “time” that we wouldn’t have had and I (we) value that so highly. 
  2. I hate at the most vicious of levels, what these drugs are doing to me and hence to us. 

Go figure, … 

The Bean, Pendeen, 18-Nov-2018

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