The recovery? (Well, Maybe)
Not only is this year flying whilst I feel stuck doing nothing. The football season has come back around to us again. The Chemotherapy is done (I hope) so I am removing the details for the opening of the blog. You just have my targets. That really need some more attention now.
TARGETS
Friday 27th August
A feeling of Deja-vu as I am being chased by my insurance company as they haven’t received the two-page [4 question] form that needs to be completed by the GP office. The form was sent through to them on the 12th of July and I am still waiting for it. They came back to me on the 31st of July to say I had to pay an admin fee of £45 which was paid on the 5th of August. As mentioned, the insurance company just called me to chase it, they shouldn’t need to be doing that as its them who will be paying out. I would much prefer to be doing other things than chasing them, but each week just rolls along, and I have more money going out than coming in. I also need repeat prescription which was sent earlier this week and a new sick note. Which whilst I’ve been writing this, I have already had a reply to say they cannot issue sicknotes ahead of time so I cannot get this back to the job centre for their deadline. I have just deleted my original sentence here and won’t repeat it, but you would think that they would be aware of such rules about fit/sick notes.
Moving on I received the letter from the other department which had a reprinted letter that was apparently sent on the 10th of August that I never received. I tell you these post office people are shocking aren’t they with the number of missing letters that must be piling up really high by now. Maybe they are making planes out of all the paper or maybe it never reached the post office in the first place. Surprisingly or I should say unsurprisingly I received the letter yesterday this morning at 8.00am I was in the Health Clinic getting the blood tests taken less than 24 hours this took me. So, please do not call me and tell me what I haven’t done when uninstructed to do so. Let me know and I’ll get it done. That is how I roll. I also have a new appointment to discuss the results so congrats and thanks to Amy for actually doing what was expected and unlike the other unnamed nurse who didn’t. I shall move on as all I want to know is what was the actual result of all the Chemo. We will have to wait and see on that.
I said I was going to concentrate on some of the targets above and I have an update or a failure on one of the above. The 33 has gone completely wrong and is now 38 so this needs to be seriously addressed and part of that kicked off this morning as I went for another walk. Which will help with two other challenges. I walked for 12km which is about 7 and a half miles, it left the ankles not very happy, and the dog has been sleeping all afternoon. I guess she may not of appreciated this either it all started so well but I think she had had enough long before we started heading home. Right now, I don’t feel so bad at the moment which isn’t so bad. Again, this could be different in the morning. I am way too behind to be organising a charity walk at this stage. To give you an idea the planned walk is close to 30 miles, and I am struggling to complete a third of that. I am far from ready but it’s a slow process and I need to get back on it and stick to it as I have been too easily swayed from the plan. Concentration and other things are changes which will help with this.
Whilst sat here I have had some Iron Maiden videos on the other screen and I have realised just how much I’ve missed them and the whole live music thing. Being at a gig in the pit or simply being surrounded by thousands of like-minded at. Live music and being at a gig in the pit or just in with thousands of other likeminded people all there to enjoy the band that we all love whichever band it is. I miss that, just between us I have gone to the hole in the wall many months ago and took cash out which is hidden and sealed in an envelope just for the download festival. That cash has to cover the ticket getting there and back and anything else for the day as well. I hope there is enough in there. Seeing the price for the Reading Festival (it’s kind of down the road (well it’s not but it’s the closest festival to here!)) I haven’t got enough to cover that. I am not planning the whole weekend like before but just a day ticket, which haven’t been released yet. Oh, and there’s parking to cover as well. Jeeze, you feel like an orange as they squeeze you for more and more cash, its even worse once you are inside the grounds. Enough waffle and dreams it’s time to post this and get down to some serious game playing.
Wednesday 25th August
Well, today I am annoyed well I could use a more aggressive tone here as I have just had my call with Nurse, and I was not impressed. Ignoring most of what I said as she was busy telling me off for not following the instructions – that I was never given. The conversation when roughly like this…
“Hello, I’m Amy from the hospital.”
“Ah, great Hello!”
“you don’t appear to have had bloods taken?”
“No, should I have done?” “Yes, That’s what Penny instructed you!”
“No, I never spoke to her!”
“In the appointment.” “Didn’t happen!”
“Well, the instructions were in the letter along with the bloods form.”
“Never got a letter.”
“Well, you are to have bloods every 3 months and CT every 6 months and if you get behind its going to be difficult to catch up.”
“You tell me what to do and I will do it.”
“You need to have bloods done.”
“Great, where, when!”
“It’s on the form”
“That I don’t have!”
“OK, so you don’t have the letter or the forms?”
“No!”
“I will send them out to you!”
“Once received I will organise what is requested.”
“Bye!”
“Thanks, Bye!”
The conversation was a brief one and the contact that I have waiting for over a month was not the most positive outcome. The only thing I did gain was how they are looking to maintain review the situation, which was one thing. I shall move on from the way the NHS are dealing with me at this time and move on to other things.
I finally saw my team win a League Cup game! We joined the league 2011 and I have never seen us win a game in this competition. We had a little hour and a half drive last night we played awfully in the second half and scored a 94th minute winner to go through to the next round. Then drive home. Good night all round we stood throughout the game and the legs were fine. New trainers and a new hat passed the test so all happy today. Draw is tonight lets see who we get next time.
Health wise I need to work on the 33 and get my finger out with that and pretty soon. The kids are back at school (AND COLLEGE! - **** I’m old). Which maybe a good way to have days out walking for mile after mile. We are looking at things further a field now and work will have to be part of that and my bar is moving down as the need for cash will grow steadily.
Anyway for now I’ll be off playing games 😊
Saturday 21st August
This could be called Ambivalence day. As my mum has had her procedure at Hospital and will be coming home and I’ll be going to get her later today. This makes me very happy whilst on the flip side I am feeling pretty useless at the moment. I will tell you a story first which sound petty and silly because it is petty and silly, but it links into something.
I always loved games and board games, but I really got into it again about two or three years ago. When I first got into it, I was a newbie like the first time you find a search engine on the internet you type what you like. I did the same but with games, I stumbled on a game called The Thing which is based on the movie which is one of my major favourites. Watching it played I got very excited and went searching to find a copy. Out of print and not going to happen. Naturally you turn to the second-hand market. The prices there started around £80 but as the years went on, I’ve seen it as high as £160 to £300.
Coming to the end of the Chemo and potentially NHS support I had not signed up to PIP or other financial support as the plan was live as we have been and call upon insurance for the mortgage, but this is not to be worried about until the other side of the recovery or I won’t be here to worry about it. Chemo is done and I’ve applied for a few jobs, but I was invited for an interview on Friday for what would have been a perfect job for me all the skills I’d gained would have come together so I would have been doing something I enjoyed and got paid for it. So, I was set for an interview.
To bring the above two paragraphs together on the day I was invited to interview and unusual for me I checked Facebook and on a board game group someone is advertising the game second hand for £95. All my dreams had come true on the same day. I later got a direct message which read something like the game is back in print and will be coming soon. I didn’t care I wanted this one and planned to go back after my interview. Now interviews are something of a cockup waiting to happen I always find a way of screwing it up. Having the interview, it seemed to go well, and I was really felt it was going well.
That evening I went looking for the messenger message to read and check the details again. I couldn’t find it so planned to go onto this system (not my phone) and find the message. Nope not there. I go to Facebook to find the post and then direct message the guy with the same message again. The post is gone. Now this could be a lucky escape and he could have been a fraud, but it didn’t feel that way. Early next morning I got an email from the organisation that I had the interview with, and I knew from that as it was an email it wasn’t good. Sadly, I was correct and now I am sitting here with two dreams on the floor no money coming in and begging with a doctor’s surgery who has taken my £45 in admin fees to actually do the admin so I can claim the mortgage support money, so we don’t have to worry about that for the next few months. If I am honest, I am trying to work out what contribution I am making to this family and the world in general. As I am taking and not using it very well.
That said I have reasons to be happy but again this is all other people that I am reflecting from. It will be good to see my mum come home today but then there will be more days of hospitals to come as well. At least I can help there as well. Anyway, there is football on today that I cannot go to and other things to be excited about but again the budget I’ve put aside for it may be better spent supporting elsewhere. I just feel a bit shitty today. Can you tell?
Friday 20th August
Good morning one and all.
I am feeling a bit down and deflated today as there is lots of things going on and I am struggling to keep up. Before I start, I will say that I am honest with most things I say here I leave some details out as I don’t think you would really want to know about infections and some procedures in detail. I try hard to avoid talking of friends and family as they may not appreciate my views or sharing some details. If it’s something embarrassing, then I will not name anyone and avoid giving away a gender for example. That said I will take you on a journey of feelings as they have been on somewhat of a journey or rollercoaster this last few weeks.
Firstly, we lost a member of our family this week and for me it was a complete shock. It was unexpected and I was not expecting it. To process this has taken time and I am not sure I am completely there yet. She was a lovely, lively person that was so caring and kind. I have memories and stories that instantly spring to mind but sadly many were from my younger days. This meant I was not able to keep in touch nearly as much as I would like to have. It’s not until now that you realise and then life goes on and you fall back into the same rut you were in before. The world is lesser place without her and those my thoughts are with the family around her. I can assume how hard it is right now and the offer of help from me is there. I might be seen as a distance away, but the offer is real and there if needed.
Much closer to home my mum was taken into hospital this week and is going for what I called an operation today. It may be classed as a procedure, and we are all very worried and hope all goes well. When doctors are tinkering with the heart your concern levels rise naturally. We all wish her well and hope to see her home and verbally kicking arse again over the weekend. I know she reads this so you know how I feel and let me know if I can do anything or if you need anything brought up to you.
The follow-on point from the above is that my daughter has been working really hard bringing a production of ‘Godspell’ together to be performed at the local theatre and art centre. (go look up South Hill Park and see how amazing this place is). One of the cast was diagnosed with Covid-19 followed rapidly by another. Followed by more and then it sounded like the whole team had been tested positive. My little girl (in my eyes) is and has been so careful with the whole pandemic situation because she know what it would mean to me if it came to this house. She was devastated and took to wearing a mask in the house and staying in her room. She’s been doing the quick tests (as I call them) daily and each one has been negative. This has also prevented me from visiting mum in hospital. We all then took the main proper test that then goes off to labs for formal testing which is the main one. All four were tested and all four came back negative so we can return to some form of normal from the self-imposed situation we were in. Now I can go visit my mum I cannot as she is having operation and things today. I feel for the youngsters as not only do they have an illness to deal with but the show has been postponed so rather than performing tonight tomorrow and Sunday they are now at home recovering.
My doctors are holding onto a document they have charged me £45 to complete (two pages of questions) which is delaying my insurance payments to help support with the mortgage. I chased again yesterday but completely expecting to hear from the insurance company again today saying they are still waiting. This I believe is the final piece of information they require, so a bit frustrating. Meanwhile I am now looking for work and actually had an interview yesterday which I thought went really well and I was really hopeful. Not that I thought the interview went ok but it would have been a dream job for me, and I would of loved to have got it and was really looking forward to giving it 100% to get back to some sort of normality. Also, those that know how much I am into my board games would also be aware I’ve been searching for a game for years was for sale second hand. I found it online on the same day as the interview. It was all wonderful things at once. I had two messages today one saying he didn’t want to sell the game and you guessed it I didn’t get offered the role. To say this morning, I am gutted for so many reasons is an understatement.
The one joy has been football is back and not just back but really back. I will draft another article to try and explain that sentence in more detail for you. Then again, we played a team off the park on Tuesday only to concede a 97th Minute own goal to finish 1-1 we now face 3 of the projected best teams in the league on the bounce so this mood may change soon also.
The walking group was good this week and many people came along which is always good, but we went on a different route this week which hopefully changed things up for everyone. I think I am close to being back in charge so could tick off one of the above. Which leads into another downer as my training has been halted by a calf injury so I am so far behind my schedule it would push the charity walk back to next year which is another disappointment.
That how I am today, I am not one for being negative despite many reasons to be and I do try to shrug and keep positive, but I think the job thing was a final straw and whilst in my negative mode. How come the car in the Aviva advert was not stopped from hitting the pet shop by the barriers that surround the shop? That’s what I want to know. If the car hits the barrier there would be a massive V in the front of the vehicle and it would have stopped well before the shop. Which then leads you to believe that there was not a barrier there in the first place. Meaning they had barrier poles all the way around the corner of that street with the except on that one corner post (probably the most important) WHY NOT? Seriously!! And how many pets did they have in the window as the car has only hit the front of the store and there are hundreds of weird animals all over the streets and the car. Where the hell are the rest of the pets kept, they have thousands in the window and just food around the back just to torture them. Look at what you cannot have critters!! This is just how I am feeling right now. JUST GRUMPY I GUESS!!
Anyway, things to do and items to kick… let’s get on with it!
I may have worked out what to kick first as the dog has an issue with one part of the dry mixed food that she has. So, she delicately removes said item from her bowl and leaves it all over the living room so I can ******* step on them barefoot not just in the morning but throughout the day. JOY!
It took me so long to write this it is now the afternoon and not the morning which gives me another reason to be grumpy… but I will be a grumpy old man elsewhere for the rest of the day!
Tuesday 17th August
Well things are happening but all so very slowly, but I thought I would share some more info for you. My daughter has been working very hard over the last few weeks backstage for a play which is part of a college course. Tail end of last week one of the leading cast members tested positive for you know what. Then like domino’s they have contacted the rest of the group with confirmations. My daughter however so far (so 5 days after) still has been testing negative. This is a worry for members of the family here (namely me) but so far so good. We have also tested and come up negative *by the way*.
We had a great day at the football Saturday, but the football was the main but least important thing that day. This now changes as we are back again for the next game so now; we will start to concentrate on the results, and I guess I should write my own little bit about the day and possibly the journey on my blog and link it in. Anyway, I have no idea who will be along with me tonight, but we will see when it comes to it.
Three things apropos of nothing:
ONE - I have a new – old car but it has DAB radio in it and I have rediscovered Planet Rock and yesterday morning they were playing Skid Rows – Slave to the Grind and what an excellent song that is that I completely forgot about. It has no relevance to me right now as I am not a Slave to the Grind at this moment more a man of leisure and recovery but I am trying to change that but we will have to see about that.
TWO – A friend of mine (who will remain nameless) like myself in recent weeks has been eaten by Gnats and mossy flying things. As I think I shared on here lots of Calamine Lotion is the best post bite treatment I can think of. Well, they said it hadn’t really worked for them. Taking two teaspoons in the morning they were still itchy all day. It wasn’t till later, that the word ‘Lotion’ was explained to said person. They are now applying the ‘Lotion’ to the bite area and leaving the drinking to wine, spirits, beers and soft drinks… You hold people in such high intelligence then you hear this and the mask has not just slipped but fallen on the floor.
THREE – On Sunday I went to a shop and they were getting the Halloween decorations out ready to start selling its products. That is 77 days before the big event. Which means using Christmas as an example the shops will start stocking Christmas stuff on the 9th of October as that’s 77 days before Christmas. I understand that after lockdown shops are needing money to survive. Well, I ain’t got none so you ain’t getting mine yet. Even those the skeleton candle holders are pretty tempting and the plastic skeleton stack looked good as well. I digress…
I will stop the attempt at humour and move on. I have a bad back as I was trying to make skimmed milk and getting them cows across the lake was really tough.
More updates when I can.
Saturday 14th August
Its Saturday night and I am a little sunburnt and have lost my voice slightly as its very gravelly at best. The reason is that we went to the football today an historic occasion and I kind of lost of control somewhat. I think I overspent and ignore certain rules. I went and brought hot-dogs for all. Including my daughter who is vegetarian!! What the hell! I have no idea what was going on in my brain. Anyway, the three of us went to the football today and soaked up an amazing atmosphere and a day not to be forgotten. Today was a result of many years of work and effort and dedication often work given (or offered) for free and all that hard work paid off for around 9,000 people for whom it had pulled together perfectly. The result became more important as the game went on and taking an early lead quickly vanished as we conceded three without reply. When I returned to my seat we were 1-3 and then a penalty followed by another goal about a minute later and the last 15 minutes saw the game and the score-line level. We had a great day and good enough for Sean to change his mind and want to come back again on Tuesday for the next game. I will conclude this paragraph by simply fantastic. I am finishing the day with an alcoholic beverage to celebrate.
For the rest of the day we have been walking lots and according to my phone catcher we walked for 5 miles today backwards and forwards. I even had a bit of a wander at half time to find the pub and the other area’s around the ground as everything was finally all open and the shop was open so we had a wander around there. I am out of breathe quickly at the moment as well. Walking has broken down a bit and I am drinking and eating the wrong stuff so I need to have a good long look at myself and then refocus on the 33 and that will play into the hands of the walking as well. I need to get the focus sorted and that is all down to me. Maybe check tomorrow where the 33 actually is at the moment. Right boy down to you!! I’ll update when I can.
Friday 13th August
Ohhh its Friday the thirteenth and I have misplaced my ice hockey mask. I will attempt to update you on the week of ups and downs and hope for more positives soon. Beginning by saying as I type this, I am on hold to the hospital who was due to call me this week (I have an appointment letter with a date and time for the telephone call). This did not happen, and I called on the day, where I was given a direct dial for the nurse so called that number and left a voicemail. Here I am two days later still without a conversation with the team who oversee my care. So, by way of a health update, I have none to give at this time.
Job front I have received another ‘no thanks’ which is against their policies, but I have applied for another job at the same place if this is another ‘nope’ I will be contacting the HR team about their policies. As they publish one thing then ignore it which is false advertising if nothing else. I will see about that in due course.
I will catch you up with the rest of the week. Where should I begin?
Sport? OK the Footy team has had a good week so far. Starting the season with winning on Saturday. Followed by winning for the second time in 10 years in a competition. Which is amazing for us it means our average in the round exiting the competition has moved above 1 for the first time ever!! We (as in the family) are really looking forward to tomorrow where we will all be going to our first everyone allowed to go together game. The club is going home it’s taken 30 years and about 20 years according to the kids who don’t know better. This could be an emotional day all round, it is about the football but tomorrow could mean much more than that. It’s the first one and the important one. We really want to enjoy it.
Next up is my wonderful daughter who has had her GCSE results and she had done really well!! I will be completely honest and say that she has put my GCSE’s results not just in the shade but under a canopy, in a house, in the bedroom, under a bed, in a box, in a seal metal locked box, in a tin in matchbox in the dark corner of the tin. Blown away how well she’s done. She should be as proud as I am. She’s done so well but she won’t allow me to put the results here, but she’s done really well and that’s where I have to end it.
Further to the update on Tuesday I went to dad’s group meeting which I forgot was a ‘bring and share’ - food and drink special event. I forgot and got to eat choccy stuff and drink coffee whilst sharing nothing but my wit, which disappointed everyone. The numbers were low, so I didn’t get a lot of choccy and caffeine but for the second meeting on the trot I WAS EATEN!!! The mossy and/or gnats took me for lunch and was eat! Last time the bites got infected this time they have stuck out like ripe pink bite marks. It looks a nipple on my forearm and my calf, I am finding my body parts appealing. I am going to stop the comedy now and move on.
Last night I ditched the games for a week (sorry lads (& lasses)) and went to the cinema to watch an old film. Which was a movie as old as I am, and it showed in parts, but it was a film I thought I knew really well but it still made me jump once. The horror classic of ‘The Texas Chainsaw Massacre’ which had me wondering a couple of things that I would now like to watch again to see if I spotted an error or two. I always knew that the make-up on gram-pa was bad but seeing it on the big screen meant it was really bad. That said the rest of the movie played out like it was made in 1973 (as it was) and the grainy picture helped make the movie even more creepy. It was really good to see it on the big screen as I never had before. Is it seen as a great movie it is in my top 100 but only just (its 93 on my list) so I like it but it not my big favourite, however it was a good night.
I have two friends that are getting the exterior of their homes sorted. One of which was completed this week and the other is due any time soon, but I have not asked so both could be completed but I only know of one. If not ‘Darren’ get your finger out and get it sorted so the scaffolding can come down. Elsewhere the home in Buffalo is looking mighty fine and I might have to contact Biden and see if I'll ever be allowed to go there and see it for myself. Oops I got side-tracked, moving on...
I got through on the phone and apparently, they have marked the appointment on Wednesday as DNA which I took offence to. This came across and I have a rescheduled appoint for TWO WEEKS time. I should expect a call from a nurse this afternoon (I won’t), but I will wait by the phone in two weeks’ time just like I did earlier in the week where I was shunned and not spoken to. I am done with the update as I don’t really have one.
That’s All Folks!
Tuesday 10th August
This will be another short update as I have accomplished very little since the update on Sunday. I have not had my appointment with the surgical team so there is nothing to say there. I have organised my tour now for the end of September. I have sent another application in for another job but still haven’t heard from the other outstanding one I mentioned before. The reason this update is so short as I have meeting tonight with the dad’s group that I am a member of. It’s at a different location so I need to leave early enough to get lost and then find the right place before the meeting has ended so I shall be dashing away. Hopefully, I’ll be able to give a proper update later this week.
Sunday 8th August
I thought I would do another update as things have been going on an I have ignored (well not replied to messages) and that I need to address. I also want to focus on a few things and need to update some people who have been chasing for news. I also have a post recover plan that has come together.
The news from Thursday was very sad and my heart and thoughts are still with the immediate family of my auntie who has sent me kind wishes since the start of my journey. I am at home but allowed to drive so if I can assist and help with anything at all the offer for help is here. I have sent other messages as well.
Next up I have received many other messages and the large percentage of those are from Aunties and I haven’t said it recently how much those messages and good wished mean to me. I won’t single out Aunties as cousins and Uncles have sent positive vibes this way as well. Thank you to everyone that has sent me positive thoughts and good luck messages. They are appreciated even if I haven’t had chance to reply to many recently.
Update wise the doctors came through with the signed documents backdated to December last year so some of money came through which means one slight panic is over. I am still chasing the other one as I am reliant on the doctors (again) and my former employers but will have to step up to the plate. This will cover one of the items above. The money that has just come in has pretty much gone straight back out the door on selfish ole me. I will get to that later! For now, I have enough to keep going but will need to step up the job hunt as I am getting stronger and started going for walks which I will update in the next paragraph. I am currently working towards the Tourette’s Action walk which I realised last weekend could be much shorter by cutting the route and going direct. I will be following a river or two so I will not be going in a straight line but meandering in and out making the whole thing a much longer deal. The Thames and Wey if you were interested. I digressed, didn’t I? Health wise I am back with the Surgical Team next week where the next phase will begin this maybe a discharge process or I am guessing another whole series of test to see what the results were. That is this coming week so I will hopefully be able to give you an update by the end of this week with where the journey is heading.
Walking is that what I said was next? I have set up a walking schedule put together but now I must try and stick to it. I have stretch goals with a weekly distance walk to achieve and the silly thing is I think I have actually done this but I forgot to record it properly so I cannot confirm that I am where I should be I can tell you that on the 3rd of August I walked for 5.31 miles (8.56km). Then on the 6th after the news of the day before I walked for 8.2 miles (13.2 km) straight and my legs was very tired at the end of it, and I was very pleased when I got home (in the rain!). The 7th was spent sat recovering so we had a short walk today of 2.5 miles (4.03 km) with the dog and Sean in tow. It was ok but the legs where hurting about a kilometre into the walk. I was looking and hoping for the challenge to happen later this year, but I may be pushing my luck with that one.
What will be happening later this year (Next month) is a solo (Maybe!) footballing road time. The booking has been made what I haven’t got yet is the matchday tickets but that should not be a problem (hopefully). The plan is 3 matches in 6 days. It would be 4 in 6 but the only option there is driving all the way home just to come back again which didn’t seem to be the right thing to do. That will be happening soon enough but more importantly it is something to look forward to. I think I need something to look forward to, as the horizon is looking bleak or barren (is a better word). I might just put a countdown on my phone, the Christmas countdown is looking lonely at the moment. (140 days if you are interested).
I think that just about covers everything. Just a final thanks you for all the people who have sent me messages, they really do mean a lot.
Thursday 5th August
Sometimes things happen that bring everything back into sharp focus...
These things can be the worst things and jolt you into realising that your issues that are important but not necessarily the most important thing in this world. There are a lot more important things, if you stop and smell the roses sometime you may see them more clearly. Today, is not a day about moaning and my own petty update - today is just to tell you all, that our hearts and thoughts are elsewhere (and that's exactly where they should be.)
Wednesday 4th August
With these updates I have always tried to be honest but there are some things I have kept to myself and to a certain extent I will with the next paragraph, but I am keen to tell you the truth but maybe miss out points that you really don’t need to know, and I will follow that with the next paragraph where I will be as honest as I can be.
OK for those that made no sense I shall move on swiftly. This week has been a low, possibly a combination of things but I will start at the top and say I have been in lots of pain which I believed was a urine infection or something related. Kid you not, but I had a text conversation over the GP app thing, and they wanted to check my urine. Having to go and a collect a sample pot I went home and following morning I had planned a long walk. The genius that I can now put two and two together and thought I’d drop the sample off and then go for a walk from there. Shattered before I got to the doctors, and they confirmed the water infection soon after getting home from the walk. Had the group walk so this must have been Thursday! I then had the exhibition on Saturday where I must have done five miles. Since then, I’ve been down, it just feels like all the symptoms and side effects of Chemo has just come back in a wave. The sick feeling the sensitive to cold, poop and feeling tired. They have all come back and I am not feeling great about it. Trying to cope with drinking and drinking. I’ve reduced this down to coffee, water, smoothies, and many bottles of cranberry juice. The driest wet stuff in the world! It is possible I am feeling sorry for myself, or it could be something else, but it leads neatly into the next paragraph.
Sean is fed up with me after last night where he broke what was remaining of his laptop knowing that we have a long part of the summer holiday to go I was annoyed and moaned at him. He got fed up with me and had to go off to calm down. I also had to do the same. This was then followed by the dog annoying the {fill in the blank yourself} out of me. Wouldn’t let me sleep started by licking my feet when I finally got her away, she starts licking me ears. Every time I started to drop off, she was licking me ears and me next. This is normally translation into I need you to wake up and let me out the back coz I need a wee. This was not the case and at about 5am she finally got the hint with me swearing and pushing her. I eventually got sleep about 5am then the alarms go off and I am tired and grumpy all day. Which leads me to this evening where I’ve been a grumpy short-tempered arsehole all day. This could be the reason for being down or it could be that everything is so difficult and hard to do. Trying to claim support on the mortgage which I’ve been paying towards for years and now I need it they need the signatures on the sick notes. Next, I hear from the job centre, and they have not paid anything but haven’t contacted me they have just let me drift on and then they tell me the doctors haven’t signed the ‘Fit to Work’ notes. I am surprised but I thought they may have noticed that there was a pandemic going on and as a result the doctors have been emailing and texting things like that out. They also said there was a gap in the dates of the sick notes, which I didn’t realise that is how it worked I guess I didn’t have cancer for those ten days. I guess I should get the doctors to not give me any more from now on seeing as that will sort it out any problems. Sorry I am bitching, and I have every sick note from mid-December to date so I have them but what’s the point in covering the difference when you will reject it because there is no wet sign on it. FFS!! This is getting me down this has really done me in today. Struggling to find the reasons to bother. Thinking of jumping in a car and heading in one direction and just keep going. Today I was too tired to go for the planned walk so that just puts all the plans back as nothing is happening and I am just whining again aren’t I. OK I am tired and cannot be arsed to write any more and now I am going to do something else instead!!
Sunday 1st August 2021
It’s the 8th month of the year with each start of a new month I think back to the beginning of this journey, and we are over a year to the real beginning but still a few months from the anniversary of doing something about it. I am not going to go into too much detail again but to try and summarise the early months you may have missed if you are picking up this story in recent months.
In the summer of 2020, I had a blood test for diabetes, and they came back to me and said you are anaemic which I had not one idea what that meant. Around the same time, I started to get some pains in my stomach which I put down to living in a chair staring at this and various other screens. I changed my diet, but it didn’t influence any change on the blood results. The pain in the belly was a subject that the doctor was interested in. I was sent off for an endoscopy which turn up nothing so was sent for a colonoscopy which I realised there was a problem when the tests were taken. I didn’t know what until in mid-December just as the second lockdown was coming to an end. I was told I had Bowel Cancer. The recommended treatment would be an operation to remove a large part of my colon. Which with my size, diabetes, Covid-19, and blood pressure I was at heighten risk of complications. Following that depending on the results there may be a chance of chemotherapy. The very first thing I did was organise my Will and followed that by organising my Funeral. Now I have never admitted this but there were two reasons for this firstly if the worst was to happen then I didn’t want to leave anything for my family to sort out and secondly, I wanted this sorted out to give me peace of mind that all I had to worry about was beating this thing. OK I admit it now I assumed I would not survive the operation. Based on the information I had I thought I could beat this thing at least in the short term but seeing the results of the op would be the big thing for me. However, I didn’t think I would make the end of the operation. I had lots of procedures to complete, infusions of iron and MRIs for example. There was also a fitness test where I was to ride a bike whilst only being allowed to breathe into a tube. This was ultimately to test how I would get on in an operation. This was not the worst of the procedures, but it was the one I was worried about. I passed it with flying colours, so we were all good to go. The date was not set but based on the information given I had guessed the week of the 17th or 24th of January. Then Covid-19 got worse, and the NHS geared up for another peak of cases. The vaccine was just starting to be rolled out and the operation was put on hold. Waiting and harassing the surgeon’s secretary every week we were given the date of the 1st of March. I knew the day before would be horrible and it was with meds to empty me ahead of the operation. I had to report to the hospital at 7am and off we go. By 8am I was ready for the operation there was no time to worry. I walked through to the operating theatre and was given an epidural. I then laid down on the cold rubber bench. This was it and I was at peace or the best I could be in the few short months of preparation I could get.
I woke up with a nurse next to me and chatted shit. I remember trying to be funny and I really wanted a hug. Failed at both. The most important thing here was that they were nurses and not angels or demons they were nurses. I wanted water and to sort that effing sock thing out around my toes. The belly hurt but honestly, I couldn’t really feel much. I spent two days in the hospital learning how to fart and not pooping. That took a further day. Then the infections began, and I was having daily visits to the nurses at the GP surgeries who gave me antibiotics and cleaned the staples. Eventually the staples were out the infections was sorted. I had my first vaccine injection and then we had the call from the nurse to go through the test results for the operation and how the cancer looks. I had done research and was expecting some letters and numbers. G0 to G4 I think which would be based on my ‘T’ number which would be 0-4 I believe. Then there were the Lymph nodes which again I had researched up. Honestly, we go to the nurse who was running late and wanted us through there quick. The tumour itself was a T3 which means it had grown through the inside wall of my bowel but had not burst out of the outside of the wall. She confirmed that they removed 29 Lymph Nodes from me during the operation and of that number they would hope for a trace element within 5 or less as a positive result of catching this early. I took a deep breath and she said that none had any signs of cancer. In my head I had leapt out of the chair and the window and was running across the car park with both fists punching the air. If this was a football stadium, I’d just scored the winner in the last minute and was running to the crowd to celebrate. She had continued and then said there was some trace elements in something else. I was too busy celebrating to realise there was a VAR review still going on in the room. The result of that section was Chemotherapy they would recommend six months treatment but the decision about this would be made by the oncologist and my care would be handed over to them.
Off I go to Oncologist who recommends three months of treatment. I have my second vaccine injection just before the start of four cycles of three weeks of treatment. Infusion on day one, a fortnight of tablets, followed by a week off before we start again. During the three months, I had four trips to A&E during those cycles and they all turned up good and no further issues with anything else although I was worried. All that brings me too here and now. I am writing this ahead of the first of August so I will make some assumptions firstly I won’t be working and will be looking. I will be working on the list of 14 challenges I have given myself for the rest of my immediate life. Ticking them off will hopefully lead to some new things to tick off in the future but for now. These are what I need to do.
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