Its July and I will begin this month with a new Page to confuse you all. As mentioned on the previous page I will give you some details of the chemo first-of-all and then the targets I have set myself.
Chemotherapy Cycle I am following -
Before I begin, I am not going to give you the names of the meds I am taking as they are long names that I know what are for and should be doing.
Day one is the sledgehammer to get things going. An infusion of clearing fluids to ensure its clean and clear. This is followed by glucose mixed with boosting steroids which help the body cope with the actual chemotherapy medication. All the while I am being monitored and tracking of the bodies vitals to ensure nothing to worry about.
After day one with have a further fortnight of tablets of chemotherapy medication which are a handful. Four large tablets in the morning and again in the evening. For the first few days of these I will be taking further steroids, glucose, and nausea medication to ensure the body is able to keep going with the main meds. From there I have a week’s medication holiday before this cycle begins again.
All the time this is going on I will be keeping an eye on the side effects as these could lead to major issues. There are instructions for any of these kick-off but to list them below.
Diarrhoea
Nausea
Vomiting
Mouth Ulcers
Hand-Foot Syndrome
Fever or Infections
Chest Pains
Sensitive to temperature
Hair thinning
High risk of infection
Somethings are obvious to deal with like chest pain may mean a heart attack so get your butt to A&E the others have different things, but I won't list them here to bore you anymore. I promised to clarify, and I hope that has done the job.
TARGETS
LATEST UPDATE
Friday 30th July 2021
A two-point apology to begin with first apology this will be a short update but there will be a new part beginning soon and you will want to hear about what I am about to say. Secondly sorry for the lack of updates this week. I have heard from a few organisations one being the I won’t be getting at least one of the jobs as I’ve heard from them saying NOPE!
I will not be going into too many details, but I have another infection. A urine infection if you want to be precise and this one has been uncomfortable to say the least. The doctors have put me on antibiotics plus other things, but this is going to be a week. I will be happy to update you next week once I have more information or details of updates. I will be started a new ‘August’ page in August (that was obvious wasn’t it!). I have been to a couple of football matches now, well one this week and we lost again. The concern is I am starting to get used to it.
It is weird but I feel worse this week than when I was on chemo, the feeling of sickness and pooping has got out of control. I am out tomorrow which is why I am off to bed as I have to be up really early (well early for me), and I didn’t sleep well yesterday so I need to catch up. Hence, I am off now and sorry it’s a short update today.
Sunday 25th July 2021
Real quick update today as there has not been much happening with me. We were up and hiding from the rain before we took the dog for a walk. She was panted by the time we were nearly home. We managed about a 6km (old money 3 and three quarters miles) which was good considering the walk yesterday. If I am honest, it still feels like the chemotherapy drugs are still in my system now that could be eating and drinking the wrong stuff but it’s a been a struggle to keep the belly under control. It is better than it was, but I think I’ve got a little over excited about being free and gone to town with the wrong stuff. Oh well let’s hope I get this out of my system soon enough and get back to being positive and start improving the body as I need to.
Anyway, walked again today and there is a plan coming but before I can commit to a date I have two in mind I really need to start to build up to this one and see how we go. I get excited and do too much then the legs give out and set me back a couple of weeks (that when I was healthy!). If I want to get those dates as being realistic, I will have to start the training properly and then see how fare I can push it, this time I need to listen to my body and slow down or rest on the days I am not up for it. Diet will need to change dramatically and soon as I need to get used to the flavours again. I hope you have checked out my bad movie reviews as Ouija Shark and The VelociPastor are live on part 4 now. I will get back to the French movies soon as I cannot get hold of two suggestions and have reservations about the Ali G Indahouse as I’ve seen it too many times and really can’t be asked to watch it again, but it may happen. As for me I feel sick which is a daily occurrence, and the grand plans don’t get very far. For example, I asked my son to shower, and he said he doesn’t have enough time to do it. Too busy playing on his switch whilst watching TV, I mean it is difficult to squeeze anything into that busy schedule. OK enough of my personal trials and tribulations I will hopefully update before next weekend’s adventures that I have planned. I might be too embarrassed to share that much detail, but we will wait and see.
Saturday 24th July 2021
Today I am talking the talk but not walking the walk. Since I opened my eyes at 10am (I went to bed at 7am) I’ve been planning a walk and then it is too hot then too wet then some other reason. So I have sat here reviewing another bad movie. I have 6 movies reviewed that I haven’t posted the pages yet as there is another page in the middle, that I’ve not started but I may well release those that I’ve done and see if we can’t just build them up as I go. I could always tidy them up later once I’ve caught. OK that’s the plan I will publish this as todays then parts 2 and 4 of the other pages backdated so this still sits at the top of the feed.
OK this will be a short update as there is a dog looking for a walk and if not the dog, then there is a fat man desperate to get back out and walking again. I think today should be the day. I could test it today and then gauge where I am when designing the training schedule for the first charity walk. OK stuff it I need to get ready and go for a walk otherwise I’ll be tapping here all day. I will try an report back later.
I am back from my walk and its been the first one for a long, LONG time and the last mile or two was a bit of a struggle. The good news is that pulling a backpack on with a 1.25 litre drink and a raincoat in there I just walked and managed to complete 10.4 km which in old money that is 6.46 miles. Now I am feeling it right now so I am glad to back here sitting down and typing this up but it was warm which kicked in about 2 miles in when in the most exposed areas without shade. I got there though, I met a friend and we stopped for a chat which was nice but got my muscles got too used to not working so that last Km home was not a happy one! Very pleased to be home though, which is a nice thing, legs are chilling now. I still have to walk the dog…
Friday 23rd July 2021
Here we are a week between updates, and I’ve set myself a target of a minimum of twice a week. This week has been more financial than anything else. I am trying to claim a few things to become some sort of income but one I am told I am getting I don’t know where it’s going as I am not getting it. The other one supports with outgoing and that has needed lots of information related to the current situation. So, lots of forms completed by me but then they won’t forms completed by the GP surgery and my previous employers. I am in the laps of them as to how quickly they will complete these forms. This may well help with a lot of things. I have started to squirrel money away for some things. Just to cover certain bills some fun things, some practical. To give you an idea - I want to go to the Download Music Festival next year whilst there are two big (well costly) jobs to do in the house. A holiday somewhere warm is still very much a dream at this moment but you got to have a dream haven’t you. Sorry I got side-tracked there. As a result, I have started to create little pots of money which are available for when I need them. I just must remember not to touch it until I get the reason for storage. Money is going quick at the moment, and I need to rein that in as the biggest waste is me, at this time it is drink as I still don’t have the return of my taste buds so I keep buying different drinks. With the heat I am keeping them in the fridge they then disappear quicker so I am replacing them with more weird and wonderful flavours which cost more but may or may not fit the bill in terms of having some form of flavour. This has probably caused other issues internally but no doubt I will get to that.
For me I have felt a bit better this week, but the heat has me simply tired I had an evening learning how to make fires and that done me in. I couldn’t believe it as we didn’t do a lot of activity but the kneeling down standing up breathing in smoke and I was done the next day. I’ve also been eaten by gnats which are bloody hurting now. I also did the walk yesterday and this morning I was shattered. Tonight, I am off watching football and assessing how the new season and new season looks. Meaning I will have to get this finished soon. In summary this week I have watched so very eh films I have found some gems of awful movies that will need to be watched and reviewed soon. This has taken me away from these updates, but I’ve enjoyed it. I have applied for a few jobs as I need to start getting back to that business again. I am not feeling 100% yet and that milky oily taste and feeling is back so I often feel a bit sick before starting to eat or drink. However, over all things are going well and I am feeling ok. Not great but OK!
More soon!
Monday 19th July 2021 - Freedom Day
Well, here we are freedom day. I am not sure what they mean, I would say that it means different things to different people. To the uneducated it means the end of lock down and we no longer need to worry about anything, it is all sorted out! Yeah, the world is done with Covid-19. Please note the words uneducated in that sentence. As I watch the news with cases at the level it was when in January and those in the NHS terrified of the potential numbers heading to the hospital. With ignorant first in line for the infection. I went shopping early this morning as I was alone and needed some supplies. There were two or three people wandering around without masks, but to give you the level of intelligence of two of them they had stopped for a chat, so he rested his foot on the cheese shelf. Hygiene and safety not needed here! No, I wasn’t going to challenge him. I have Cancer and not interested in having an argument with an idiot without a mask. Others not wearing a mask kept their distance. Even those wearing a mask tried to do so. There were some who were clearly confused so I just wandered off to collect something else on my list before returning to where they were so I could collect the items I wanted without the dodgems to get there. All in all, it was quite respectful (Note - I didn’t get any cheese with footprints on).
To others today means a return to being terrified again with the masses not understanding why. When you are told by your doctor if you get Covid-19 your dead (OK maybe not those exact words but you know what they mean). You go to the front door and think twice about stepping outside. You then retreat not just away from insecurity but from life and humanity in general. If you think mental health problems are for other people, then you have a nasty wake up call coming. The thing that gets me is the people that are flying by the seat of their pants and going out here or there. Or having visitors and generally doing what the hell they want now. Must have people they know that are vulnerable. Children want to see grandparents; Grandparents are desperate to see their grandchildren and you are prepared to risk them by allowing your kids to have friends over then go see grandpa at the weekend. Great they get to see them for the last time, and you have to live with that. OK I am laying it on thick but have a thought as you go about this new open world is what I am saying. I am not wanting to turn this into a rant but please show some respect for others in this country. I also live in Bracknell so that is a really difficult thing for those people. The respect shown by 90% of those this morning was commendable. The couple without masks kids and feet in the cheese, I fear for your parents or grandparents or uncle’s or aunties or older friends as 2 vax’s doesn’t mean they are safe. They are safer yes! But please respect those that may look fine but aren’t. OK enough of this the weekend update is a messy one.
Assuming that the Chemotherapy was over, and I was instantly free. I started on the cooler drinks and enjoyed the greatest band in the world releasing a new single for the first time in six years. Which meant any time I’ve gone near a computer it has been played and currently in the background again as I type. Unfortunately, the approach to my intake could be easily seen as a short-sighted approach. Friday was spent in the toilet whilst my wife and daughter went away for the weekend. I was enjoying the chilled (not cold) drinks that I could, but they seem to turn my tummy into a machine of get it out quick!
(Be glad there was no photo's of this weekend!)
Friday being alone for pretty much most of the day I got some things organised but was still never too far away from the bathroom. This hasn’t been a problem for most of the chemo, but I have prejudged the freedom that was coming I took full advantage. Saturday I was going to enjoy even if I had to have many a ‘P’ break it was not going to stop my fun. Me and the boy headed back to New Plough Lane to watch our first pre-season game as we played another team close to my heart and a Premier League Team no doubt. Wombles v Brentford was an entertaining match which pleasantly surprised us. The heat was oppressive, arriving we brought a Max to walk to the ground. Before we got there, we had to stop for another can. In the ground we drunk water. On the way back we got another two drinks a can for the walk and a bottle for the car. Most of which was consumed, and they were ice cold from the fridge. It may have tingled but it was so needed. We had pizzas planned for the evening [Home alone with Sean you have limited choices]. Despite the heat and maybe because of the football I felt ok. Despite the consistent pressure to have an empty stomach. This continued into Sunday but having a big breakfast followed by a slight snooze on the sofa. A sleep-in bed followed by a longer snooze on the sofa meant we were into the evening before Sean can sniffing for food. I had got food in but decided on a McDonalds as I was too lazy. Ice-creams again probably didn’t help for the night. Having a couple of visits to the bathroom in the night could have been worse. That was the weekend, we were back into the beginning of another week and a freedom day to celebrate *cough* If I am honest, I can still feel the chemo meds in me when eating and the taste of things still not being right, but I am just trying to ignore them and get on which may or may not work we’ll just have to wait and see.
I have some work type things to do this week, which I need to get my head around and I had a follow up interview with the office of national statistics today. Asking if I have been looking for work, erm no.
Eventually we get to the end of the interview where she asks if I have been unable to due to sickness, mental health, etc list I say yes. She lists off potential illnesses and I just say yep you were right with the first one and she just says oh. We move on. She was genuinely nice, and we had a chat at the end which was nice. That was today sorted I have a dad’s group this week after missing it last week. There are also pre-season friendlies this week, but I am not sure if we are allowed to attend and how safe they would be to attend. I will wait and see on that one. I will try and update again before the end of the week.
(Shhh but I have been working on two new posts in my bad movie reviews with a strong French feel about them, Part one is complete, and I am working on two before loading both onto the other pages. I am also getting given suggestions of movies to review which is great keep them coming)
Thursday 15th July 2021
Evening update – Little bonus update as I have been out and about today. I went and met a good friend in the park to have a coffee and chat. This was followed by joining the walking group today which was busy and fantastic as there was so many people there today and Pat was there which was so good to catch up with. I followed that with arriving home just as my boy arrived home from school. I then cracked opened a curry and had a seafood curry which blew my taste buds and head off and I followed it with a cold milk. Now the curry was good, but the milk was just fantastic. I hope you will never find out how amazing a feeling is, when you have the heat of the curry followed by the cold milk. A cold feeling that I have been unable to feel for about a month. The first cold thing to a) be held and b) be swallowed is something special. I honestly didn’t think I would cope with it, but it is done, and it feels fantastic!!! The walking group had clubbed together and brought me a present with is just fantastic. What truly lovely people they are! And what a truly lovely day to celebrate the final day of chemo. From tomorrow morning onwards I hope to feel a bit better every day. I’ll then hear from the surgical team and see what the future will bring.
Oh and to make the day even more memorable Iron Maiden the greatest metal band on the planet released a new single just to celebrate the end of chemo - which was very kind of them. The Writing was very much on the wall...
First update-
Today feels strange as it should and does feel triumphant with the end of Chemo. I took a photo of the final four orange puke inducing bullets of flavour stealing poop machines. However, this now means that the attention moves back to the whole reason this started in the first place. It is difficult to say to someone I have cancer and its not for you but for them in terms of how they will react. In most cases they feel sorry for you but you know they are concerned with the conversation prior than this now. Are you going to buy this thing or not, are you still going to be this slow or can you get out of the way quicker? Saying becomes harder and I don’t like using it as an excuse even when it’s the reason for something. Sorry for my late reply but I was in hospital yesterday. Friends or family waiting for responses. I don’t like saying it because I am ill. Walking around the supermarket today (yes, I know how to celebrate!) I go funny which appears to be the norm. It basically my body telling me you’ve just done too much, and you need to sit or sleep or just take a chill. Then you don’t want to admin it and you want to go sod it I am just getting on with this. Then I get home and rush to pack things away just so I can sit in front of a fan until I feel human again.
As for today I have taken the last of the tablets which means from now on the feelings will return to my fingers. I will be able to touch cold things and eat/drink cold things. This is what I miss the most as after a really long walk I crave an ice cold can of full fat red coke, I think it’s the sugar in there but it is a real pick me up and I’ve had the odd craving for that every so often when feeling drained and tired. Cereal with milk HAS to be cold milk, I cannot stand cereal and warm milk so that hasn’t been eaten. Lots of little things are missed but not worth listing but things will start to return to normal. Now I can say the chemo is done I can move on (if the results are positive). This section I know nothing about. What tests do they do, how do they check its gone? Is it a case of taking a base level and then just keeping and eye on which direction its going? I know about the lymph nodes but thought you had to cut them out to test them. Which means they won’t continue doing that then will they. Will they? That I don’t know but the rebuilding of my life should start today, I have plans for many things including reviewing crappy films on the other pages which may take over its own blog in future. I am enjoying the crapness of these films I watched Ouija Shark the other day now that was one to recommend, but that will have to wait as I am diving into a very dark place first with French Extreme Cinema which I am creating reviews for. There are some truly gory movies in there, if they have a plot, they might be good, but we will see on that one. I have plans for the house, which is starting to come together, hopefully I will be well enough to get some of that done myself. I have plans for work as this needs to be addressed as the savings have almost gone. I have plans for enjoying myself again and that may include football, music festival(s), a World Cup Final and a Semi-Final, Travels, and adventures to follow but all of this will be dictated to by finances. There are some charity events in the pipeline one will be me alone (but probably with support) the important thing here is training will be needed to kick in again, but with all due care and attention required. As pushing too hard this time may have long term (delays) effects. I really want to get the first one out of the way this year which means picking the right time for it.
Anyway, I will keep those dreams under wraps for the time being as they seem and feel a long way away. But you still need direction don’t you.
Wednesday 14th July 2021
Today sums chemo up. Yesterday I was buzzing that today would be my last full day of chemo before just the meds in the morning the next day. Today I wake up later than usual, so I had a decent night and got up around 9am. I got up and showered and after drying I was sat on the bed getting dressed and I was done. Shattered and knackered I went downstairs and started typing this and I am struggling to stay awake. The sofa is just behind me, and I am sure it is very comfy, and I could nap and start the day over and see if it improves any. I wanted to do so much today with the claim ongoing, preparing for the end and beginning of the end of Chemotherapy. I am told your body takes months to get back to where it was before. Which I maybe dreading as I want a better one!! I jest but that is true in terms of things coming back. I hope getting my taste buds back sooner than that and touching cold things with the summer still here. As for the hair returning and the other issues we will have to wait and see. Officially I am disabled well registered as such for the next 5 years, which just so happens to be the testing and checking period that I will be going through. I should get me one of those blue ticket things so I can park like a doofus, wherever I like all over town. For no reason but to update a little piece of life. I just found a lump on my tongue, so I stood up go and check it out in the mirror in the kitchen and I need to sit down again as I knackered. I am so glad to be back here and sitting again. Anyway, I’ve seen an email from one of those contacted recently so I am going to check this out (that and I feel sick!).
<<side note this lot above took me about 2 hours to type!!>>
After typing the above I had a lay down and ended up sleeping for a good couple of hours. This evening I really haven't got up to much more than watching and reading stuff on the PC. Until 15 minutes ago when this happened.
Those four-orange looking 500mg tablets equals have affected my body for most of this year. This picture is the last evening tablets. Admittedly, I still have the same to go through tomorrow morning and then get through the rest of the day. Knowing they will be going through my system for about a week but that will be the last tablets I should be taking for this process. Tomorrow morning and I am done with Chemotherapy and it’s not been a greatest of last day but lets see how we go tomorrow with a brighter and better outlook. The weekend will hopefully see a new me, the real challenge begins Monday! I will try and update tomorrow but there are lots of things planned so sorry if I do not manage it!
Tuesday 13th July 2021
Well, it’s been a few days since I’ve updated and there has been lots going on away from my health concerns which I will touch on.
Weekend - Firstly, my health has come up second fiddle to my mum’s health as she has been in hospital herself confusing everyone with a mysterious illness. Over the weekend (I shouldn’t have) but I went to visit her as I thought she would appreciate a surprise. I am sure she appreciated the magazine and congratulation on moving out card!! Not. So that was the weekend. Apparently, there was an important final over the weekend so congratulations Novak Djokovic on becoming the champion in 2021. See someone can beat an Italian in a final on Sunday the 11th of July. Moving swiftly on.
Monday - the hospital tells us that mum is well enough to come home so I spent the afternoon at the hospital with mum waiting for the pharmacy department to cough up the antibiotic medication so she could go home. After the meds rocked up (they were one of the smallest boxes I’ve ever seen). I took her home and sat for many hours being attacked by two mental dogs who spent the afternoon licking and dribbling over me. Which was ok, it saved on showering for the next two days. So, getting home in the evening left me no time for an update. Not that I had a lot to update on, but today I will give you my feelings of how I am currently.
I keep cheering myself up by looking at the bag on my desk. OK I should explain my system I have to take 4000mg of meds each day as chemotherapy. So, the biggest tablet you see times four in the morning and then another four in the evening. To keep them twelve hours apart I separate the box and the bag to have half next to the bed and the other half down on my desk. It makes it feel smaller numbers straight away. I wake up check the clock and take my medication then set a 12-hour countdown which alarm reminds me to take the evening meds. The blister packs have 10 tablets so to do a countdown I took 2 from one and 2 from another. Then I took the four which means that now I have blister packs with a days’ worth of tablets and it’s so uplifting to get up take meds and not put the pack back into the box or bag but throw the pack away. Each day seeing the bag getting smaller or the box lighter just feels good. It the little things you know! Well, I currently have two blister packs in each the box and the bag. Which means little to most but to me that means – Tonight there will be one left in the bag. Which then means tomorrow morning I will have meds in the morning and then the last pack in the bag.
Finally, on Thursday morning I will get up and take the last medication out of the box and we are done. NO MORE CHEMOTHERAPY (I hope ever) but for this cycle of chemotherapy WE ARE DONE. It feels really close now that I can’t wait to be able to have a cold drink on these hot days and not have to think twice before looking in the fridge. I can walk around a shop without getting grumpy for some numpty coming to close in a shop. Having to be ultra-careful and ultra-aware of anything that maybe a sign of infection or a problem that could lead to something else. OK the care will move back to the surgical team where the test will start over. Before they can declare success, failure or somewhere in between. That I will report back to you guys when I have more information, I am just worried that I’ll have to go back and have the same tests I had before. They were not the most pleasant of things.
That is the update which could just be one sentence… 2 day left to go before the chemotherapy is done and I am in countdown mode for that!!
Friday 9th July 2021
It has been another eventful few days, but things are happening now that probably should have happened months ago. Having some pride and not wanting to accept help it makes things tougher in the long term. I had confused myself with Tax, Credits, and benefits and whatever. Knowing what you are entitled to when you are having been brought up that way is a steep learning curve. There are also other things to organise which needed attention so spending more than quarter of a day in A&E makes things difficult. Any way enough cryptic crap let’s get through the weeks update.
Tuesday at the hospital but managed to book up a Covid-19 test so we can rule it out of one of the reasons for the chesty feeling. This happened on Wednesday morning and then the football was on in the evening although I did not watch it all. That is not a point for this page. Driving back from the test location I tried to call my mum and not getting through on any numbers meant something was wrong. She sees my number and answers it that how it is when I am going through this. So, to not answer mobile or home numbers something was wrong. I couldn’t do much as I was isolating until the results, so I started pinging off messages. I later found out that she had been taken to hospital herself so now I can update two people on the same blog. She was kept in hospital and moved to a ward. Where they have told her, she will be there for a few days at least whilst they run more tests to work out what was going on. Beyond that we do not have much more of an update.
Thursday was not spent celebrating like so many others in the country it was spent organising a few tasks and planning to get myself organised. I didn’t get the all clear it time for my walk so sat in the evening still waiting. I still have a cough but that is the same as most in the household. To me it’s a cold/flu type thing that has knocked us all for six, but I still don’t have the Covid-19 clear to be able to change anything. That came later in the evening when all options were depleted. Then I get the negative message and so is Sean. The girls are as well although no on feels very well.
Today was task day so getting myself sorted I headed out from home and ticked off four tasks in one trip. Feeling please with myself I return home finished the last movie review. I watched two howlers yesterday terrible movies just so you can avoid them. Reviews will follow on the other blog pages. This completed I started updating this one and then all the excitement hit me, and I became very tired and sleepy so had to go lay down before concluding this section. I am still feeling tired and drained but that is still better than some in my home. Let’s hope for a better weekend.
Tuesday 7th July 2021
It feels like an age since I have given an update on this section but realistically it has been a day where I was free to do an update and I didn’t really have much of an update then. I left it and organised some administration tasks that had to be done. Things have progressed with certain requirements which now leads onto more jobs for me to do there are some other things looming which I will get to should anything develop from there. To give you the chronological version of everything.
Sunday, we had visitors and I wasn’t feeling great which is a bit of a shame, but we had a walk (not as far as I would have liked) and I was completely done in. I slept well that night, but it was worth it to see some friends who I haven’t seen for ages. We had a good catch up and was outside socially distanced. It was a great day and I thank them for it.
Monday was strange one as it was spent organising things and getting things ready and ordering stuff ready for delivery, we now must make more decisions linked to it. That is for a future blog post and will remain secret for the time being. (we are talking months away) Monday came and went. All through the weekend my breathing hasn’t been great. I had put this down to the head cold and chest issue. To quote office jargon “coldly, flu-y thing that’s going about!”
Well, the GP saw it differently and was concerned about my lungs firstly of infection and more so the potential of a blood clot in there causing the signs of infection. There was another issue of a urine infection, but we will breeze over the impersonal side effects of that. I sent my request across at 8am and they called me at 3.20pm. After a brief conversation he says you need to go to A&E and ask for a chest X-ray and urine check.
Before I start the next bit, I am not moaning about the stuff at the A&E unit at all. Yes, the second visit there I was forgotten, and I was left on a bed in the early hours of the morning for 2 and half hours. That is not what the following is about. Guessing that this was another “just in case” scenario I headed off to the hospital alone parked up and walked to the A&E department. Arriving there were five people (or couples) ahead of me to go in. Taking my position outside the building I lent up against the wall with a chap with spots in front of his eyes in front of me and someone with Parkinson’s behind me I waited. They waited. Everyone waited. Nothing much happened. The queue got longer. I was there for about forty-five minutes when a nurse came out and went down the queue asking about each individual case. Some of these people had appointments! She got the chap behind me a chair, I say I am fine then sat on the floor. I just felt tired. I was spotted and she got me a chair. For the Don’s fans reading the chap behind me had a blue chair and mine was yellow!
(Sorry) after about a half an hour more I got to the airlock system by the entrance, and I was let in to check in. I go report in and soon I am checked by the triage nurse who sends me to another room when a canula in put in. They then move me to a quiet corner of the waiting room, where they will try and get me cubical as soon as possible. I sit there and almost fall asleep as the rest of the waiting room slow spreads towards me. With people bringing their chairs to me in what was told to be my corner until a room is found. I see people who has lesser issues to me who followed me in getting called through before me and I start to think that they know something that I don’t. When the nurse comes and says we have your blood test results and they looked good. Aha the penny drops my issues will take time to check where the lesser issues could be sorted and sent home before they decide on whether to keep me in or not. I assumed the latter as this is becoming the boy that cried wolf scenario. (What was his name?). It was at this point I resigned myself to sitting here for much longer. To give you and idea I arrived at 4pm and was triaged at about 5.20pm. The nurse told me around 7.15pm that my bloods were ok. I was in the waiting room and here is where I am going to be for a while. I closed my eyes and pretended to sleep, honestly it made me feel better. Before 8pm I was in cubical and tried to tell the story the best I could. We agree to go through their process of a chest X-ray, ECG, and a CT to rule out issues with the chest. I kept pushing for a urine test. I go off for an x-ray come back. This looks clear we will send you for a CT scan. Now I thought I’d had one of these before (I HADN’T!). They pump dye into you and various parts of your body suddenly feel hot. The groin and face it really feels like you’ve just peed yourself. Whilst this is going on you are fed into a tube which is taking readings from your body. That done back to the cubical. Urine sample in my pocket we go for an ECG which is where they stick labels onto your body which they connect to unit which reads your hearts work. This all seems good. Blood pressure is the best I’ve seen in ages. The doctor who I saw before comes in with the good news and says you should be all good to go home. What about the sample? Then I must explain the situation there again. He takes the sample and does the dip test comes back and says there is no infection there so go home.
Oh, I nearly forgot that they then asked me to double, and triple check the Covid-19 situation by booking and ensuring that I have a formal test done as there are more than one of the symptoms showing. I have taken Sean today, so we have both had test completed with the results due soon. In the meantime, other members of the household have had clean reading today so my optimism has gone up but I do not live the optimistic life so I will remain home and see what the results bring.
RANT TIME –
After arriving at 4pm I leave the hospital at 11.07pm (I’ve just checked the parking receipt) which in my book is a seven-hour visit. The NHS needs the support to help those in this country and it does so with actual help. I still heard people saying its not acceptable to wait outside queuing to get into the hospital’s A&E unit. No one asked why? They just said this is happening to me. I am hurting now so you need to fix it. Not I voted for a political party that thought that clapping and thanking the NHS was great then offered a 1% pay rise. The equipment used is acceptable but not more than that. I could add that the previous time I was in A&E there was no working lights in the cubical I was in. (I offered to bring candles next time) in the end, I had a single light in there. Now the senior members of that team have the decision. Use this facility or say its too dangerous close this room and reduce the capacity of the whole department. The staff there are dealing with who knows what. I keep going back because I am sent there, I don’t want to be there as I know I am a pain in the arse of their working day. I don’t want to be pain and being pushed around on trollies where I can walk made me feel like a charlatan.
I knew that as soon as the potential crisis for me was ok (the bloods were ok) then I would have to sit and wait. I get it because there were people that could have waited to see a GP but didn’t want to. There were people moaning and for me anyone well enough to moan about the service probably should not have been there in the first place, but they have to be careful each time.
The issue to me is communication and I have seen that in local authorities where one person in one department doesn’t know what someone else does in another team. (For this comment I’ll use the word customer) This worker tells the customer that this team will deal with the issue. They go to the team and are told sorry that’s not us try these and the customer is now lost to a circle of ‘is it you?’ that can help. In this situation there must be an end point and in the NHS it’s A&E as GP send people there, other departments send people there, its out of hours and you don’t want to wait go there, you have a problem go there. Within every organisation there must be an end (or dump) department where everything sits.
The added problem here is that this is possibly the most important front-line site that needs to be protected and not abused. The weight of work will become too much, what happens then? I am just moaning about spending 7 hours of my life waiting to be told what I already suspected what I knew. Honestly no, I am not one to main about that. The car park bill that was close to £10 which doesn’t go back into the services that I needed is something I moan about. It goes in a profit column of a car park company. That is where I see the problems. LA’s look for profit making projects that will then be self sufficient which is great. Use that profit to a-keep that project going and then b-skim off the profits to support other services that need the funding. Workers should not be precious of there teams to not help another.
Wow, where the hell did that rant come from? I don’t know but it was good to get this off my chest. I will stop now.
Sunday 4th July 2021
Oh, before I start, I wish to hope those American followers of my blog a happy and joyful 4th of July. It is in recent years I am glad of the independence and having nothing to do with an egomaniac desperate for his own gain whilst ignoring the populous. Dictator like I am please we can shrug shoulders and say nowt to do with me guvnor. Enough politics enjoy your independence and celebrate well my American friends.
Well, I skipped a day as there was lots happening yesterday, I did a bit of shopping, and my love of the public and safety has not improved any, but I will get to that. I have nearly completed my PS4 Zombie game that I brought about 4 years ago that I have just dug up and started from the very beginning, so I have been enjoying that. I also had a bad poop and threw up, so it wasn’t all good. The last sentence happened after the England game so at lease I got to enjoy that before the lovely evening. I again did not sleep well and today I am feeling very fragile and weak. To say the least. Let me continue with some more jumping around.
I popped to a ‘smaller’ Tesco’s on Saturday, mask on and waiting for people to shuffle up and down aisles despite being in a bit of a rush. I had a moan and a swear at two other parties there. Firstly, whilst looking for parmesan cheese in the cheese aisle a woman who clearly knows the two-metre rule managed to hook onto my backpack and drag me down the aisle. “SORRY I APPEAR TO BE IN YOUR WAY!!” Showing my displeasure. Secondly at the till there was an older lady in front of us and she was neatly packing every item purchased into a sections of square packing pockets in her trolley it was like watching Tetris in real life. She was taking her time; in a rush we had chosen the till and loaded the bits we had (mainly liquids of different flavours for me) onto the conveyor belt. Meanwhile two vest wearing, long shorts foreign sounding gentlemen decided to queue behind us. When I say behind us, I mean about an inch. If I’d have bent over, he would have owed me dinner and night out. As the lady continues to pack the conveyor rolled forward to leave a gap behind our items. I refused to move. I couldn’t go forward she was still packing. They were keen to shuffle me along so they could get their items on. When they stepped outside my 2-metre zone I would have moved. They didn’t so neither did I. They move and I told them to eff off. I was not happy. I shouldn’t have been there maybe but respect from everyone goes a long way to keep everyone safe. Sorry for my language and becoming a mini-Karen but I was not happy in there. God paid me back by making me sick later that night.
We have visitors to our humble abode, so we have tried to tidy but I feel like shit warmed up so really haven’t helped much. Probably making it worse rather than better. I have 500 ton of drink under my desk and three mugs on my desk. I hate the taste of everything now and I am desperately trying to find something I like. There are things that go on a rota Tea for example at this second tastes fantastic yesterday poop in a mug. Fizzy drinks if not cold are ok but even those flavour change and a mouthful at the beginning is great, by the bottom of the glass. Food is the same. I have the feeling of having a cold. I have the shakes, feeling very weak (Note I’ve ended the steroid tablets now), breathing is laboured, sneezing, and wheezing a plenty and feeling very tired today. Blood pressure is still high but is much closer to ‘normal’ pulse not racing today so things are improving with the new meds. With the amount of liquids going in I am visiting the loo most of the night. The dog hates me. Every time I get up, she jumps in my warm spot then looks glum when I return to try and sleep again. Right now, I just don’t feel great which may make me short tempered and grumpy, and I hate feeling like that but can’t help it. Maybe a few days of rest might do me good well Monday will do it. If not, I will be calling and asking for help again and I am sure they will be fed up with me by now. The worry now is the story of the boy that cried wolf I’ve been into A&E three times now and into the fourth cycle of chemo that cannot be a good record. They will be fed up as much as I am.
Right, I’ve just drunk too much tea.
I need to get my arse in gear. I have a sofa that is calling me and a dog desperate for a walk (which may or may not happen (well, with me anyway)).
Beyond the drugged up – update soon after my operation where I refused to go back and self-edit the update this must be the most random update going so far. Today, I feel upside down so this is probably appropriate for the day. Looking forward to better times. Crossing fingers there are plans that I really want to happen. I have some more reviews to write first and I have just worked out the introduction to my next one (Thanks Rue).
Friday 2nd July 2021
That was the day that was, and I am going to admit something on here that no adult male would do but this is my blog and I promised good and sh!t and this is me being a fool so it goes in, and you can make of it what you will. I will go through yesterday in chronological order and me being an idiot was at the end of the day so you will get there eventually. You have most of yesterday morning below. I got to the chemotherapy clinic and walked in needed a p and then sat briefly in reception. Really not in there exceptionally long and it was weight and hand washing before taking a seat in B-Bay for my infusion.
The PICC was already in, so we were off and started rapidly. The nurse pointed out that from the blood test taken yesterday for some reason did not include the potassium level results so they will take blood now and send off for a rapid test straight away now and they expect to hear back around 4pm to 4.30pm. When the result wasn’t there, they contacted my consultant and when they didn’t get a reply by the time, I arrived they contacted another doctor who looked at the situation and the potassium levels have been consistent throughout the cycles so she says it should be fine get the rapid test done to be sure but go ahead. I was plugged in and had the saline and the anti-sickness steroid type thing. As we come to the end of the first infusion there is a call into the desk and its my consultant who says to wait until we get the results to be sure. I had mentioned to him about my GP calling me in for low potassium and then I remembered when I told the nurse as I missed the call from the GP which was devastating to me. I get an appointment tomorrow (Friday 2nd i.e., today!) at Royal Berkshire Hospital in the middle of Reading I could get there but I have no idea about parking there as anyone who’s driven through Reading knows it is not the nicest especially if you don’t know where you are going. I will get on with it as I am easy going and just want to get on with it. It was blooming hot in there.
At this point a nurse walked around to his office and spoke to him as he didn’t realise, I was already in the building and started so he said it was ok to complete the process. After many apologies both as it stopped and when we restarted again. It was blooming hot in there. We get the chemo meds hooked up and off we go again. About an hour in, I get tingly feeling at around my lips, so the nurse halts the infusion and then slows it down but seeing as it improved, they sped it back up again. Towards the end of the session, they took my temperature was high the part I didn’t mentioned was that my blood pressure was high as well from memory it was 138 over 110. I was worried about this I was given paracetamol to reduce the temperature. With all the complications I was the last one there by the time I left there were 3 or 4 nurses left and just me on the entire ward, I realised they were worried and wanted to be extra careful.
At home I checked my temperature and at one point it was 34.7 which later returned to what it should be around the mid 36’s. Meanwhile I start taking my blood pressure, the first reading was 146 over 120 with a normal pulse of around 86. Around an hour later about 11pm I take another reading and it was 161 over 101 and a pulse of 102. I call the out of hours team at the Hospital in Reading and I think they got the nail on the head. By asking about the temperature and then asked about pain in the chest or shortness of breath and I said no. But I do have a cold which has caused shortness of breath and runny nose and a cough. I didn’t mention this. But hitting the nail on the head she says stop taking the blood pressure readings as this are going up possibly because you are worrying about them causing them to go up which will cause more panic and rise the reading. The best thing to do is get a night’s rest and contact your GP in the morning about the potassium thing and see what they suggest. I agree but had already written a note saying I was going back to A&E as I had pre-guessed the conversation. I was wrong and sent to bed I had another couple of cups of teas when on my group call (It was a thursday night). With the extra drinks and just like last time it begun some slight heart palpitations as before. I think the high bloods and the shortness of breath and knowing that a good friend of mine was feeling a bit under weather (just like I was) right now went to bed and didn’t wake up after his heart failed in his sleep. My sub conscience plus caffeine kicked in and was wide awake at 1am. I decided that I would force the case and head to bed before 1.30am which didn’t really happen, and it was around 2am when I got up the stairs for bed. I looked at the ceiling and the wall and the dog gave me a cuddle, but sleep was not going to join me. If you haven’t realised this is the stupid part.
My mind was working overtime and I even sent some late after 2am text and messages to people affectively saying goodbye as I was convinced that if I fell asleep, I wouldn’t wake up. At 3.30am I gave up and headed downstairs to sleep on the couch. I gave up very quickly on this and just put the play station on and played games until my son was up at 6am. He wasn’t happy with going to school today, so attention turned to him until he actually left on time. Then I had an hours sleep as there was some tasks to do today which I haven’t done. Whoops. I sit here tired and sleep with blurred vision knowing the dog wants a walk and I feel drained of energy and struggling. Which I don’t sort out soon then I will be shattered for the first week of chemo which makes it a complete struggle. Meaning I have set myself up for a fall before I’d even started. OK enough of me feeling sorry myself I will move on.
This morning I contact the doctors and explain everything, and they suggest not going back to the original meds that I stopped a couple of weeks back but trying some new meds which if they are the first meds, I took years back I was allergic to and ended up coming out it hives, lets hope not as this could cause confusion with all the other meds that I am on now. I will start the meds today and then keep an eye on my BP over the next 3-4 weeks but will have much more time between checks and not panic after each one. What a sad and scared man I have become.
Thursday 1st July 2021
It is/was Chemo today was a bit troublesome for a couple of reason which I think we have got to the bottom of. Firstly, the blood test taken yesterday the results had come back but without the potassium levels, so the nurses onsite had spoken to the onside doctor who thought they had remained level throughout that should be safe to proceed. They had not heard back from my Oncology Consultant, so we had begun. I had the PICC anyway, so it was quick to get the saline and the anti-sickness steroids into the metal hanger and into my arm. It was already through when the consultant came back and said he wasn’t happy about going ahead without the result. They took blood before to run a very quick test now which will be done by about 4.30pm. It was about 1:45pm at the time. I was booked to go to King Edwards ward tomorrow at Royal Berkshire Hospital. With no parking and a walk from the multi-storey to the hospital. They would double check and the senior person there decided to have a walk around to the consultant who was onsite that day. She returns at about 1.56pm (ok I checked the clock this time) and says he didn’t realise I was here and already going through the motions so keep a close eye and get the results asap. We proceed. Starting the chemo part of the process just after 2pm. Around an hour into this my lips start tingling so I ask to check this should be expected and they were concerned so slowed the drip down by half and hour. A bit later they check back in, and the tingling is gone so they moved it back up by 15 minutes. My blood pressure was much higher than usual and its generally high anyway. My temperature was high as well over 37.6 at one point. This I have put down to how hot it was in the clinic that day. The nurses were hot, the patients were hot, the room was hot, and I was extremely hot. I took the longer route home to enjoy the cars aircon longer and give it chance to kick in. Having returned home and sat here in front of a fan I am cooling down and asking Sean to remind me to check my temp later he made me do it straight away and it was 34.7… Now I am simply confused. I feel better if a little lightheaded. That could be lack of sleep, but all the nurses wished me well as they were leaving. I was the last one in there, with 3 or 4 nurse staff (not just me alone). They suggested keeping an eye on everything tonight and if anything is high to call into the out of hours number before tomorrow. I could always call tomorrow if the same thing occurs. As for now I am feeling better I have eaten, and it nearly returned but it all stayed in. I will continue for the remainder of the evening and let you know in the morning.
From Earlier today (on previous post) –
This will be the last update for this page on the blog. Today will/should be the last of the infusion chemotherapy. This is due in less than 2 hours-time and will be followed by the final period of tablet medication where I will be home and looking to get through it as best as possible. The second cycle was the only one where I didn’t end up in A&E. Let’s hope the final one will be a good one (well the best one possible), as it is never going to be fun, but you just hope for the best and staying healthy being the main thing. Well, the countdown is on and soon my attention will change to the future rather than the here and now. This will be a short update obviously and aim to start a new page number 5 should be started soon as we move into July. Many thanks again for all your support not just for this page but the other pages as well. I appreciate your love from all parts and that has continued throughout this year whilst everyone is having their own issues so thank you again.
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