Having to start with an announcement about having to start all over again.
All the (almost) daily updates to the previous post with the same name has been wiped. I cannot retrieve it and there was no back up. My previous blog had 400+ posts which I backed up each one didn’t have any problems. This one has just 10 posts on it, to the point where I would just update directly onto the site itself and as a result I stopped backing up. So, today I lost the original post and there’s no back up, it just so happens to be the most valuable one as well. To say I have been gutted all day, would be an understatement. What with the phone call from work followed by this weird glitch I am not having a good day? I had put a new update on there today as well. Following the Part 1 which had a couple of daily updates covering everything up until the 10th of February, so I’ve lost a fortnight’s worth of information. Honestly, I could have cried this afternoon. It has been desperate attempt to find something, anything, anywhere. That’s it, all gone.
Second point to sit at the top of this post. Is that anyone who is aware of my situation has been effectively asked not to share this information in general. I know this is a blog and I am sharing everything here but if people want updates it means I just have a single place to share it and anyone who wants the information can get to it. So, if you have stumbled onto this and have asked friends or relatives about me and they haven’t said anything blame me and not them for following my request. To try and explain I just don’t want to be a gossiping point. I don’t want to be the first point of a conversation - Oh have you heard about Pete. I am not one for being the centre of attention and I’d prefer not to be for this reason. I am struggling to keep everyone updated so this system means that I can type anything I want to and then everyone that is connected gets the same update. It has come from the horse’s mouth as it were and if you are following, you’ll get the latest information all at the same time. Also, for the record I will be copying and pasting from the back-up file from now on!
Wednesday 31st March – Last update for this post
Well, this is the last update for this post for further updates I will move over to part three which I hope to be much more positive as I am desperate to think more positively going forward. This has seen me go from counting down through February and then starting this month with the operation then the blog changed to me moaning about the pain, the injections, redness and the issues of getting through each day. I want to change things up a bit and try to be a bit more positive. The wound is closed as of checking a few minutes ago when the dressing has pretty much dropped off 1.15pm.
As for now my experiment has proven that I am completely wrong and one lifestyle change is definitely needed. I really did not sleep very well and as a result I gave up around 4.30am. Where I watched the clock until about 5.30am and got up. I sorted the boy out for school from around 6.20am through to his departure time of around 7.40am. From there I started typing on here, which you will see in due course. Around 9 I’d given up and gone back to bed and slept to the afternoon. From there I have not drunk any coffee as it had become a staple of the being at home and from around 2pm I have felt so tired its unreal. I feel like a zombie! Just tired. I am hoping that means that without a coffee from now till the end of the day I will actually sleep tonight. Added to that I have been out again, walking to the superstore and bringing my guide with me to carry the heavy business home. There are some advantages to having a 6ft plus 14 year old in the house. Anyway I bumped into a good friend on the way home and it cheered tired limbs to help ease the rest of the journey home. There are plenty of things I need to do tonight but would ask if people are up for a game first. Getting my priorities right. Tomorrow the new begins.
Monday 29th March - Latest Update
Good afternoon, I am here again typing at the laptop again. Today was always going to be a busy day but the first meeting (second appointment of the day) was cancelled before I was awake. The lack of injection was such a nicer start to proceedings. The pain was unrelenting today and desperately wanting to go to the shop for a couple of required items and the desire for a particular take away which I have had a hankering for since coming home was the driver today. I wanted today to be a treat day despite all the busy business to take care of. Heading into a superstore, that initial steely determination evaporated not even half-way around the shop and the pain took over. Heading off to the petrol station where the Subway was. Admittedly it was not as good as I hoped or remembered but it was just what I needed and ticked it off the list. After the first meeting was postposed until the middle of April, next up was the nurse which I will update in the next paragraph. Next meeting went very well, and we now await the updated report, but the feedback was very positive all round – which was good. The fourth and final meeting of the day was not booked correctly by us. As we had assumed it was a group presentation like other schools this more of a speak to the teachers so we hadn’t actually booked anything. Missing out on this we did manage to tick 2 out of the 4 off the list and I can start on the next list of actions tomorrow.
The update from the nurse was positive today. The infection was not looking as fierce and red as it was last week, so the antibiotics seem to be working quicker this time around. The pain however is just as bad as it has been, but I believe the biggest difference today compared to yesterday, is that the timing is completely off and I cannot remember which painkillers I have had and which ones are due. I have had morphine and paracetamol this morning and not taken any for a while but without a proper logging system I am not sure when it’s running out and when the next one is due. The wound side of thing was good enough for the nurse to not book any further appointments but trusting me well enough to come scurrying back should anything take a turn for the worse. The wound’s discharge was minimal which means I could easily remove the dressing and then slap a new one on top of it myself. Or to be honest it may not need one going forward so when I take this one off, I could just leave it that way. If you know what that means? I can shower properly again!!!! None of this hokey cokey business of put your left arm in, your left arm out, dry it and move onto the right. It’s now a case of stand there wash everything, dry everything get dressed and go.
I wrote another long paragraph but guess it’ll be easier to read my medical situation in a list of bullet points –
Sort this infection out!
Get myself back fit again (want to get back walking and driving would be handy)
Get the second vaccine injection asap.
Consultation with Oncologist
Chemo to be completed as the letter received today has simply confused me.
Sunday 28th March
Here we are on Sunday morning. I had a reasonable night, not the greatest but not bad. I am now up watching Special Unit 2 which is a sci-fi type of show about a special unit in Chicago that tackle mythical creatures like werewolves and dragons that attack modern day America. All I can say is if you have missed it, leave it that way! I for one enjoy it. That complete I have had my injections and taken paracetamol. I took my antibiotics without dropping it and then dropped my normal meds instead. Pain wise, its not as bad as it has been. The redness is going steadily, it is still there, and the hardness is reducing as well. It is less solid and not as wide as it was, but you can still feel it. I have not taken morphine today and it doesn’t hurt as much as it did and I am not one for taking painkillers because it’s on a list, if it hurts then I’ll take it, but I won’t take it for the sake of it. Today I don’t feel too bad, so I won’t take it. OK the day is moving on and I will report back later.
Part II – Evening
That’s it!! The injections are done and dusted the last one was injected at 10.36pm today. The last one was not too bad considering some of the other historical ones. I had deliberately put a box at the bottom of my meds bag with next to no injections in. Meaning when I got to open it on Saturday morning there was only two days worth left at the bottom of the box. I had set this up to cheer me up when I got to open it but the tricky thing was to forget that I had set this up in the first place. It was a case of, yeah it’s the final box followed by there’s only two days left in there, OH YEAH!!! As I type, the injections are finished and I cannot express here and now just how pleased I am about this. The really important thing for me now is the alarms have been cancelled off my phone and I know that I am not going to feel that dread as the alarm goes off anymore. Just the usual dread of an alarm reminding you that you have to go to work, or a doctors appointment or you have to collect the kids from somewhere. I hope that I do not get asked to do them ever again. I understand the purpose but would prefer any other way of dealing with it.
The infection is very much still present but the pain at the sight is not as bad as it has been. The wish now is for all the infection to be done and dusted is the nest real desire. My concerns go back to my ankle issues which rolled on for 18 months and a follow up major operation. I’ve already had one so having another just to clear up the previous one (this is what happened before) is such a worry. Maybe its just me being negative tonight as I have not had a great afternoon or maybe the worry is genuine, and this is something that will need to be addressed. I could easily just be over thinking this but there is a lot of things to contemplate about life now. Tomorrow is going to be a majorly busy day as I mentioned before with a visit to the doctor’s surgery and then 3 meetings to work through. With schools involved with each (to shed some light for you). So, if I don’t get chance to update tomorrow its because I am celebrating not having injections anymore and listening to lots in meetings!
Saturday 27th March
From Fridays update I would say mentally it got worse before it got better but I assume I should give you a full update. Where should I start? I would be going to run through each point but instead I think I will go through it as a timeline. After typing part 2 yesterday evening I went through the physical and mental torture of injecting the anti-blood clot stuff which I will not miss when they end. I took all the meds and realised that I have not taken one antibiotic without dropping it. Every single one has been collected from the floor before taking it. Last night I was tired which may be a reason for the dropsy. Having done all the requirements by 10.45pm I called it a night and headed to bed. I slept through till nearly 7am where the dog woke me by licking me ear. This is dog speak for I need a wee please open the back door. The lesser seen dressing gown deployed my desire for a wee was dealt with first. I then struggle downstairs and the dog has vanished. I get to the back door and she isn’t there, ready like normal. I check her basket and nope still no sign. Well, you have had your chance missy I am going back to bed. Aha there she is!!! In the warm spot that I had left behind! Cheeky b***h! We renegotiated the warm spot agreement and I go back to sleep until the injection alarm wakes me a 10.20am. This is completed before dropping the antibiotic again and taking the morphine.
Warning for the next paragraph – You can always skip to the next one.
Pain wise, it hurts to move standing up, sitting down, laying down, getting up, sitting in the wrong position or in the wrong type of chair. Results in pain! If I am comfortable then it doesn’t hurt. In bed I am fine until I try to roll onto one side or the other. It frigging hurts - no matter which way you look at it. Across the upper part of my belly under the skin is rock solid and hard to describe but I will do my best. It’s like a four-inch line, that is about two inches high that is just solid. It feels like something is trying to push itself out. I have seen Alien, but I am not called John Hurt so I hope this is not the case. On the (my) left of the longer wound it’s a much smaller situation I’d guess about 2 inches by 1 inch of solid hardness. I did say I’d try my best to describe it and that was poor description, but I am doing my best. In terms of the redness of the skin its not as red and glowing as it was. The only other thing to note is that every so often I get a twinge whether sitting, walking, standing, or laying down just to remind me there’s still pain across the whole belly. I did nearly forget that, but it just happened which reminded me. So even though all this has been going on since yesterday I still managed all that sleep.
Where was I on the timeline. Oh yes, I had some lunch and sat in the comfy chair watching some tv before I got behind the laptop and put the football on which really cheered me up. Nothing lifts the spirit like drama right at the end of the game and your team wins. Before the end of that I had started playing a game online which really sucked me into concentrating which helped forget all the pain and other business. Well, that game finished about 10.45pm and I lost which didn’t really matter as that normally happens with that game, but it was an epic battle. Sorry to anyone who has messaged me I was wrapped up in distracting myself. Before I finished, I had to pause to take my injection and drop my antibiotic (again) before taken all the other meds required at that time as well. Before returning to the games epic conclusion where I lost.
If I warned you before I really should do so again with this paragraph as well.
The end of the evening was basically me fed up with all of this business. The injection did go very well again. You need to pinch a bit of skin to be able to put the injection in. Which I did but I would normally release the pinch to push down the plunger. I forgot and pushed the syringe down with the pinch still on and it went down very easily and there was a burbling sound. It was like I had created an air-pocket and was pushing the liquid into an open space. I let the pinch go and then started worrying that I had caused another problem, as the pain in my thigh kicks in. Which led to the next paragraph.
The end of the evening was me grumbling and moaning about basically being fed up with all this business. Everything that happens has me panicking. Are the injections wrong? Is the Covid-19 vaccination causing problems? Is the infection because its returned? Is the infection because I am allergic to the string that’s still holding my bowels together? Is the headache a sign of something worse? Is the Chemo going to cause more problems than resolve? Everything that happens to me or my body just has me jumping to wild and stupid conclusions. I then reminded myself what the alternative would have been and what I feared in the first place.
I just think that this evening, I have simply had enough and just over thinking everything and now I am worrying about worrying. I think I need to take stock and get a fresh start. I have the busiest Monday that I have had in ages at least this year. I have a bit of a list to get through including a visit to the doctor’s surgery and then 3 meetings which are not about me, so I won’t share the detail here. I am finishing the night with Cradle of Filth blaring in my ears as I am typing this and realising that I must set a reminder on my phone to start this earlier. As I have been contacted by people that think the worse when I don’t update, and I fully appreciate that. I have been surprisingly good on here then suddenly; I stop for a few days I would be the same. I will slap my wrist and make sure I do something even if it’s a sorry forgot today I will update tomorrow. Means I am still well enough to do something.
Anyway, for now the clock is ticking towards 1am and I have finally started to feel tired. I may share the good news tomorrow or Monday depending on when I update. Tuesday I will give the update on me (away from health side of things) and I will try and keep you up to speed on the health side of things every day (I can't promise I will but I can promise to try!).
Good night!
PS - I will think I will start a new post for the start of April to log things easier and then you won't need to trawl through everything.
Friday 26th March
Morning, I wasn’t planning an update until much later today but after the night I’ve had I thought I should let you know. Yesterday was a great day, well, kind of… well, it finished alright. So, the plan was to get up send the email into work with my decision, then get the injections done. Doctors and then I was off for the Covid-19 vaccine then organise some other items to take care of and then it was games night for the evening. Well that all went out the window as I believe that the decision kept me up all night I never really got to sleep until the morning where the rest of the household were getting up. That after a late night the night before. I was up got the doctors business sorted and then had to head out for my vaccine injection. With the hope that all the side effects pass me by as I really couldn’t be doing with that business. I sent ‘that’ email and honestly felt fairly good for the afternoon and then the evenings games went off really well. I was laughing and honestly had a good evening. Then after logging off all I did was go and sit in the same chair I am in now. I suddenly and I mean suddenly felt very cold and basically dropped everything and headed for bed. By the time I was getting into bed I was shaking so violently that I threw my phone across the room just by shivering. I had a night of broken sleep and woke to a wealth of pain. The belly is really not happy its back to being red again and its solid under the skin. Which are all signs of infection and for me something to worry about. I am trying to balance this out in my head with the side effects of the vaccine, what are they and are they affecting this or is this completely different. That I don’t know but what I do know is that my stomach hurts like a Mother Hubbard again. Every move, laying on my side, getting up, laying down sitting up too straight and just sitting here without moving still makes the odd twinge here and there. I have managed to organise an appointment back at the doctors and this really makes me feel bad as it feels like a step backwards. It’s hard to see it as three steps forwards and one back and not one forward and two back. Especially if they send me back to the hospital which may well happen if this is what I think it might be. I am trying to not to get ahead of myself again. I will try and just let it go and get on with it.
Part 2
Here I am back for a further update, later in the day and I have been back to the surgery to see the nurse I haven’t seen since early last week. The belly was very red and so was elements of the wound. Infection is back and it is blooming painful with it. I am back on antibiotics and I will be back at the doctors on Monday as long as nothing deteriorates over the weekend and I must go to A&E or through the 111 service. I am not sure where this is all going my big concern is that the issue, I had with my ankle is going to be the same with my belly. If that is the case, then I had to go back for a major operation on my ankle and I’ve already had one of those with my belly and assume I could do without it again. The next point is about chemo which may actually help with the stitches?? I have no idea but if it’s a case of flushing my entire body out then that could help with that couldn’t it? This evening I’ve had some paracetamol on top of the morphine earlier on and sat here I am not in pain. I am sure that when I get back up and move around the pain will return, but right now the pain is gone, and I feel fine right at the second. So, I am going to stop now!
Wednesday 24th March
Well, well, well what can I say? Yes, I am. Is the short answer. There have been some developments which I have had to focus on which has resulted in not being able to organise and update on here. Sorry, I am ok, and things are improving which I will get to, but I thought I would do a brief daily update for each day I’ve missed, but then decided against it and thought I’d go with an update on each thing instead.
The important thing to begin with is the wound and after having to dress the wound myself on Sunday as the current dressing started to peel off. So, changing it I have to say it didn’t look so bad and I was able to change it quite well. When the nurse saw it on Monday she was really pleased with the progress and said I could skip a day and come back on Wednesday where she could redress it again and see how it is then. I subsequently did a couple of good and silly things, firstly I tried to walk home and got as far as a bench on the other side of the park I mentioned the other day. There I met a good friend and had a chat like two old men sat on a bench. From there I managed to walk home ok. Next day I took the dog with me and headed for the same bench, whilst sat there I sat and met a whole host of people walking past and chatting. It was a good day. The sun was shining, and everything seemed well in the world.
Later I decided to clear a space where I used to have my mini office which my wife in an attempt to protect me, had blocked my path and left things in the way. Meaning it took some effort to clear everything off and get into my old position. Last night I got online to play some games and enjoyed myself so much I lost track of time and sat there into the early hours meaning today has been painful. However, I managed to take the dog out again along with the boy who took me all the way to Sainsburys where I could sit outside and recoup ahead of heading home. After getting home I had to sit and chill until the pain eased. Now I am back in my mini office typing this trying not to hunch over the keyboard again. The bit I missed was the visit to the nurse today where she has effectively discharged me from the daily visits. Left me some dressings and then said if you have any problems let me know and if you need more dressings then come back to us, as it should be a case of checking it again. This is a great sign to me that things are coming back to normal, I am allowed in the shower again and this ‘posh-wash’ business will soon be part of the been there done that part of this chapter. All looking good and the wound’s discharge (sorry!) was minimal which is a day I’ve been waiting for, for approximately a month now.
Next subject is the covid-19 vaccination which was brought up before in the meeting with the hospital nurse who said to bring it under her control to organise it much quicker than usual. Well speaking to the nurse at the GP today she said they had received a letter asking them to organise it. So, this will be happening tomorrow and speaking today the chances are they will organise the date for the second injection and with the situation that I am in the chances are it could be a case of sooner rather than later. I believe that both injections will be completed before being referred to chemo. The appointment to organise the chemo can obviously happen at any point, but the chemo would probably need to wait until the jabs are all done, and my immune system has caught up with itself. Then I get to try and test it out all over again with the chemo that is required, to clear all this business up.
For those I have spoken to the decision I need to make is related to my work situation as I have been off sick for some time with all this cancer business. Whilst being off sick for all this time has meant that the situation with my job has changed. I was contacted on the Friday before my operation on the Monday to be told that my job is being cut into two different jobs with one full-time position and a part-time admin type position. I was told that at the end of my fixed term contract they would invite me to apply for the part time job and then see if I can get it. There would be reduction in the basic pay grade as well as reduction of two days a week. If I don’t apply, they would offer a redundancy package. This week I had another phone call to discuss the changes to that offer as they are now offering the part time role to me without having to re-apply and the pay would be the same but pro-rata being reduced by 2 days a week. Alternatively, I could take the redundancy option. This has meant that I have some choices to make about the future without really knowing what the future looks like. The chemo could start next month, or it could start in 2- or 3-months’ time, I simply don’t know. Added to that the vaccine could push the start back as well. So, this week I have been seeking advice and have had a few conversations with the lovely people at MacMillan who have basically pointed certain things out to me. They have explained some of the options that may be available to me rather than talking me into one thing or another they just said think about this and think about that. This allows me to weigh up all the pros and cons of all options before deciding on what the next step of my life might be. One thing this conversation did throw up (that I didn’t realise) that my younger self has put somethings in place to support this old fool for exactly this type of situation. It also means that I can concentrate on the important things whilst other stuff is being looked after. Decision wise I haven’t made one yet, but the thinking will continue tonight as they want a decision from me tomorrow. Which hopefully explains why other things have taken over this blog this week.
With all the above going on I have not really thought about giving an update, which then means I am genuinely sorry if I have caused any additional concerns about me. I guess that will be most of you reading this and a few nosey ones as well. Walking helps me think and may well be the reason that this has kicked off again. I am keen to get back to the longer walks again but this could be some time away as the one thing everyone keeps reminding me is – don’t rush this recovery. I do enjoy being outside and looking forward to the next wander keeps me happy. I hope this explains why I have had a bit of a blind spot for this blog and to be completely honest with you a late night and some walking today has got me feeling weird. I cannot say that I am really in pain, but the best description would be that my consciousness is floating about two foot above my head, all the time. If I concentrate hard enough, I can bring it back into my head where it should be, but this may take some time and results in some slow answers. I may have mentioned before I was asked if I have had a Covid-19 test in the last three days. I thought oh yes, I did when in the hospital and looked at my wife to help me with the dates. Three days that was three weeks ago and I must get out a calculator. If you need another example, I was asked my age today and the person asking had to work it out for themselves and (honestly) corrected me. I hadn’t a clue. If they were a little kinder, they could have said 21 and I would have been happy until I fired up the calculator on the mobile again. The issues this evening have been why would I want to go upstairs. Then going upstairs to start the dilemma of why the hell did you just go upstairs. You are there for a reason! Come on man think! Get this thing done, collected, dropped off or whatever the reason you are there before you go back down again to then remember why and must go back upstairs again. Some people tackle the countdown conundrum I tackle the why they hell am I here, question of life. So, when I am asked are you more confused than usual? That is an easy one, I just ask the wife to answer for me.
Ok last one was a joke as I think this update has come together quite well. Maybe I should put a reminder on my phone in future. Thursday is board game night so may have to go early tomorrow.
Saturday 20th March – Summary
Summary
As it’s the weekend I thought I would give a bit of a summary of the whole thing. So, operation was 19 days ago and was very tricky apparently with a typical 3 hour process taking an additional hour making the op 4 hours. That time doesn’t include prep and post op time as that appears to be much longer. Being in by 7am I would have been in theatre before 8am and I woke up in the afternoon. From there it was only a day or two of wandering around the hospital before getting to go home. The bowels hadn’t worked by then, but I was warned it could take three or so days for that. Things to look out for:
Bowels not working.
Infection.
Wound opening.
Cold shakes (sign of infection).
Nosebleeds.
Blood clots &
Lack of moving around.
So, to keep to the same order
Bowels are working fine thanks!
I have an infection that I have one day left of antibiotics.
The wound is leaking still but each day seems to get better.
Cold shakes I had on the first day at home which I believe was part of the infection as these seem to be under control now.
Yep, I’ve had a few of these but again I’ve not had one for a few days now so seems to be back under control.
I effing hate the injections and have grown a real mental block about this but this morning wasn’t quite so bad.
This is just annoying now I am not one for sitting around for long. I know the belly may suggest otherwise but I have news about the diabetes which will be shared in the following paragraph. For now, I have managed to walk to the park and sat on the phone for a while until I was too cold and headed home. I want to make this more and more with the distance further and further afield.
Diabetes
Before I went into hospital, I had bloods taken about the diabetes to see if the medication was working. Now without going into huge detail about the tests and results but the level you are looking for is under 42 and my last test was 65 which is why I was put onto meds. The results I had just before going into hospital was 37 so as long as I keep managing the diet, I have stopped taking the medication. So, things are moving in the right direction on that front.
Challenges for 2021 & 2022
The challenge 30 from the start of the year is now at 16 and having it checked at the hospital the other day it is still at 16. I feel this needs the walking to kick in before really tackling into that challenge. As for the walking I would love to do the Tourette’s Action walk this year, but this will take some training and I must get permission and a rescue team ready before I can step outside the front door. This is looking like a difficult challenge. Next to that I would love to do something for MacMillan as well as Sport in Mind who I already work for. Watch this space.
Cancer
Next paragraph is the news this week that I am cancer free currently. There is always a risk of returning or it not being completely out so there will be a referral to Oncology to organise Chemotherapy which is like dropping a nuclear bomb into the body as it wipes everything clear. I know it is going to take it out of me no matter which way it is done as there are multiple different option/versions of Chemo, but I guess each one will take its toll.
Work
Work has been noticeably quiet since the operation which has meant that I can recover and then decide they have offered me redundancy which I think they want me to take, and I think I will stop there. With redundancy it means I have a little time to try and find something else but having 6 months of chemo may put many an employer off. Things may change by the end of it. OK I am done on this subject.
Killing Time
Whilst sat on my backside all this time. I have been enjoying the Horror Channels Werewolf week followed by Vampire week. I series linked Special Unit 2 which is very silly, but I have enjoyed it. I am waiting patiently for the original Battlestar Galactica series which is due to start this week. Many movies have been consumed and reviewed in the other post on this blog. Along with that I have been watching some DVD’s which I have brought long before all this business begun. I have also enjoyed the T20 series between India and England. Afghanistan v Zimbabwe test match but missed nearly all their T20 series. Football has been on as well including my loved team on iPlayer for home games. I have tried to keep up with all the messages and texts and gifs and memes have cheered me up.
As For You
I will conclude this summary by saying a massive thanks for all the messages and pics and text phone calls and cards from well-wishing family and friends. You have cheered me up and brought a smile to my face and in some cases during some of my darkest times in this whole process. A massive thank you again as I can honestly say that I have felt the love.
Thank you.
Friday 19th March
Sorry not much of an update today as not much has happened. I have been to see the nurse again today. Dressing has been changed and the wound is looking much better than the last time she saw it which was last week. For me today looked like the redness was around the dressing and not anywhere else. Unfortunately, there is still a leakage but its easing or slowing. After visiting the doctor, I headed around the car park and quite frankly I was done. I had to head back to the car and have a lay down. For the rest of the day, I have sat in the same chair I am in now. Knowing that I’ve done too much I chilled and did basically nothing all day. Now the good news to take from today is that so far (approx. 6.30pm) I have not taken any pain killers today. Not even paracetamol, which I am taking as a real positive sign. All good now, no pain and its Friday night take away. Let’s see what the weekend brings.
Thursday 18th March
Hello again, here we go again, and I feel like I am trying to force the issue a bit today. I just felt like things and I have made them happen and now I wait to see what the end results are. To explain the joy of yesterday was tinged with the prospect of six months of chemo. No matter what, I am going to get through it and come out of the other side in whatever form and then play those cards that are dealt to me. So, less philosophy for now and more actual facts for this update. I had a late-night last night where I think I was too tired to go to bed which sounds stupid (I know) but turning everything off and climbing the stairs and chasing the dog around and whatever just felt too much. Meaning this was probably the latest night I’ve had since being in hospital the result was sleeping through the alarms in the morning and ending up waking around 10am leaving next to no time to wash (this task takes much longer than normal), brushing teeth and washing my hair. Then my injection alarm goes off on my phone and I am not going to lie the prospect of those injections is causing real mental issues. I now get into sweats and just bursting the skin is a tricky thing to do. I am having a real issue with this and it feels like its harder to do each time I have to do it. Enough talk of this as I don’t want to dwell on it more than needed.
I see a completely new nurse at the surgery today, who was very nice, and I was in and out of that place in seconds. I get back to the car and I say that I want to walk around the superstore that is right next door or alternatively I want to walk home. I get talked out of it and have pain at the site of the wound on the drive home. So was probably the best thing to do after all. I get home finally have something to eat and I am sat here going I want to go out. I feel like I haven’t been out for ages and I want to go out. I go for a walk, which means walking to the top of the road and going under a subway to reach a park. Reaching the park, I sit on the first bench that presents itself and there I stay. Call my mum and chat for a while until I get too cold to stay there and must cut the call off and head home. Getting home I must have another coffee to warm up and settle back into my seat. Now I have to find out if I have done too much but apart from feeling cold, I don’t feel too bad. I have my group tonight so this will be a good gauge as to where I am on my recovery as this is just a video linked chat but it can go on for a few hours so it will be good to see how I get on. We will get there; I just don’t know how long it will take.
Wednesday 17th March
Well, what a day it has been so far. It’s St Patricks day so it should be celebrated with a pint of the black stuff and to give you an extra incentive I have some news. We were back to the hospital today and the nurse who had been treating me for the wound for the last two weeks had suggested when speaking to the nurse from the hospital ask about: The wound, the oozing, and the infection. Which I did but she didn’t seem that interested and didn’t check it or even want to see the photos I have. No interest. When we got through my list, we moved onto the real reason for being there which were the results from the histology, which would give us the ‘T’ level of the tumour, how many Lymph node were cancerous and whether there were any other signs to be worried about. The bit you are looking to hear is that the surgeon cut all the tumour out successfully. To try and explain the T score a T1 is a growth inside the bowel. T2 is a growth on the inside wall of the bowels a T3 is a much larger growth that is within the wall of the bowel, where a T4 would be a growth from the inside that has grown through the wall and appearing on the outside of the bowel wall. Beyond that the cancer will be growing through the body. For mine it was a T3 which means it was a large growth within the bowel which to be completely crude it’s been cut out. When they did so they will also take samples of the healthy area as well to investigate if there is any spread and take some healthy Lymph nodes to see how many of them are cancerous. There wasn’t any sign of cancer elsewhere and they managed to take 26 of them Lymph Nodes. Suggesting to me that a low level would be seen around 5 affected or less. My result was that they did not find any trace in any of the 26 taken, which was amazing to hear, it also the probable reason why I wasn’t paying proper attention to the final part where there were some trace elements so they would suggest a course of chemo. Which would most probably be a 6-month course. Next question related to the Covid-19 vaccine which rather than going through the current process that has already begun we leave this for this team to organise. I will also be moved under the care of the Oncologist team meaning they will make the decision after a long conversation about my history and situation. There are many different types of chemo that I could go through but all in all it will be a six-month process to get through.
For the record I am currently cancer free, and the 6-month treatment is to ensure that is the case with the added plan of trying to reinforce the potential issue of it returning.
Tuesday 16th March
Hello again, I hope you are well. I am feeling very tired right now. I have gotten up given myself the ****ing jab in my leg for the anti-blood clot which I hate. Dressed and all ready to go to the nurse. Seen the nurse and then headed off to the pharmacy where I did get out and have a little walk around the car park. I was feeling good and was going to say ‘Hey, I feel surprisingly good I am going to walk home from here.’ Then I took another 10 paces and went. I’m heading back to the car. The air was nice but in a small parade of shops it may not have been that great. But I feel knackered which could have been because of board game activity last night which kept me up late or it could just be that I am feeling poop. Either way this will be a short update today. I do not have the usual nurse appointment tomorrow as I have had a call from the hospital who has asked me to go for an appointment elsewhere. I am assuming this will be the next steps, but I will be bringing up the current stage as this is not concluded. It is still very red around the wound its hard under the skin. I didn’t need to take morphine yesterday afternoon or evening. Tomorrow is the day where results will be explained to me no doubt. Wednesday will potentially be the big day in deciding where we go from here and whether this year is going to be a good or bad. For me tomorrow becomes a big one. I will try and give an update on here but will have to wait and see what time I am back and how I feel. I will let you all know as soon as possible.
Monday 15th March
Clips out day! The joy of that has quickly been replaced with the pain of having them taken from my belly. Jeeze that freaking hurt. I don’t care what anyone else tells you. It hurt. I felt them coming out and some were just a little feeling of being touched and others hurt like a Mother Hubbard. I am currently back home with a medical taste in my mouth which I’ve had since last night. No matter what I eat or drink that taste keeps coming back. The pain of being clip less is something that has done me in I hope I get over this quicker as I want to be playing games again later. Once again, I may be guilty of trying to do too much too soon, but we will see as I will take it easy today and then see how I feel later. As for the morning, up washed and cleaned by 9.30am. Which was good the belly feels bigger than it was I just hope I am not going to put any weight back on, but I have started eating what I enjoy but I am not doing any form of exercise now, so I need to be careful again. On the challenge 30 progress I was at 23 of the morning of the operation and I am now at 16 which is ok but not where I really wanted to be, so I don’t want to go backwards. I would love to be able to do my walk for Tourette’s Guildford group and then build up to a big walk for MacMillan. Right at this second, they seem like noticeably big goals to achieve but I also know that if I put my mind to something and its within my control then I can do it. Feels like this journey is going to be a tough one. To be honest being diagnosed with cancer and going into hospital was not exactly an easy journey and I mean mentally the car journey was quite easy really. Thinking that this was the end and then knowing that the battle begins with the operation and not concludes with the operation is another mental hurdle to get over. Infections and Covid-19 could or would have a major impact on my health and coming to terms with that is taking some adjustments in my thinking. Today when my belly hurts like a Mother Hubbard and all I want to do is take the dog out for a w-a-l-k. Oh yeah dogs can’t read so I didn’t need to spell that one out did I. It does feel like chemo is a matter of time away and getting back to fitness is only so I can go onto the next section of my recovery. This is not going to be easy but if I can walk a 101km route then I can do this. Must be easier than just one foot in front of the other for 62 miles. I am going to go and have a lay down now. Should be more tomorrow...
Oh and two more movies watched so a couple of reviews to come on the other post!
Sunday 14th March
Quick update today on the grounds of I forgot! We had hoped to do a bit of a self-dressing changes but those that could wasn’t brave enough and those that may not have been able was willing and ultimately, we went with the ah Boll... I mean Oh never mind we will just not bother with it and leave it to the pros. Also, the clips are due out tomorrow as well. It should mean that I can shower again!!! OH please! I cannot wait. Not being allowed in the bath and not being allowed to get the dressings wet has meant that all I’ve been allowed to do is to do posh washes. Today I have done next to nothing, I’ve been sat on the chair in the living room, and I’ve made the odd cup of coffee but from there sod all. Still pain in the wound region of my belly but I have not taken any morphine today so things must be better. I loathe the injection and they seem to take about 20 minutes just to get them done. I had another bleeder last night so had to have a plaster deployed to keep things good. That is, it! Really not much to update today but if I am honest that is what I hoped for with everything being chilled. Nearly forgot one thing from today I called 111 to try and organise for a nurse booking to change the dressing and was told that I should have a go myself if it all goes wrong then head for A&E which wasn’t going to happen today, so I’ve kept an eye on the dressing. No blood showing, which I have taken as a good sign. Checking for redness around the wound, which I didn’t see much of today suggesting the infection is hopefully coming under control as well. So, in summary –
Clips are out tomorrow.
Leaving another week for the remaining antibiotics to be taken.
After the clips, we will need to keep an eye on the infections for deterioration/improvement.
Need to get this infection beaten!
Worryingly for me is the 15 days left of those ****ING injections!!!
1-3 week wait to hear back from hospital about the next steps in the treatment.
Saturday 13th March
Frustrating, annoyed, and angry today. Which could be for multiple reasons firstly maybe down to myself. I have been determined to see my mum I had wanted to go straight there from hospital, just to wave through the window. It happened yesterday after typing the blog in the morning I was driven over to say hello in the garden. It was a competition of who could stand unaided the longest and it was probably a draw, but she got to see me and vice versa. Which makes me happy. The journey home afterwards was short, but I felt very tired and frankly I was done. I spent the rest of the day on the chair in the living room.
Friday has become take-away day and I didn’t want to change that, so I organised this online and we ate a treat. The rest of the evening was football manager as it only requires a mouse and clicking. The injection blooming hurt, and the meds made a rich cocktail that made the head spin. I was in a bit of a fog until I got myself up to bed. Being out for the count, I remember my wife getting up and little else until my alarm went off. The alarm is a reminder for injection so is now a reminder of the psychological torment of stabbing myself with a needle. If I could stop that, then I’d be happy. I know this infection needs to be beaten first and the pain in the belly gone would be great but that feels like a wish to work towards. As I sit here typing my belly hurts like a m- f- but I can understand why. I am currently not sitting in a great position, but I want this update sorted as soon as, because after that I will decide what to do to chill out for the remainder of today.
Today after sleeping until the take your punishment alarm it was injection followed by all the other meds. Before frustration got the better of me and I was a bit fed up. This could be pain related but being left with my two kids at home. One being asked to walk the dog the other nothing. Yet they don’t mind me getting up to empty a dish washer which nearly finished me off. Tired and beaten I return to the living room chair. Where I feel like I am out of place because others want the tv but unable to move or do much else I sat here and watched another movie which I think I’m going to list on the other post. The dog has been walked after approx. 4 hours of her staring at me, it makes me feel bad as this is something, I am desperate to do but probably couldn’t make it to the top of the street let alone the park beyond. Next up I am building up to emptying the dishwasher but anything like this takes time to build up to. Oh, saved the better half is home to take over but I think we both need the younger members of the house to help more. There is another thing that has upset me today, but I am not going to dwell on that as I will put it down to a misunderstanding and I need to sort some things out to clear it all up. That done and further to a conversation I had earlier today this update started at around 1pm. Its currently 5.30pm and I am just about to check the spellings and reread ready to update the post. All done and not exactly happy but I will update now.
Friday 12th March
Just a morning quickie, words that I won’t be saying out loud for a long time. However, here it is. Got to complete my group night, on zoom and switching the camera off to inject my leg and pop enough pills to make the Titanic edge slightly to the port side. Well, the evening went along its usual course with the games being concluded and then a good hour to chill afterwards before heading to bed. So, things are returning to normal in some ways, the belly this morning the redness was wider across the belly than it was yesterday. Very sensitive as well but pain is reduced but I am popping morphine at the moment which has been a relief it has to be said. Today we have a chill out this morning and catch up with the nurse we then have a few options to drop gifts off. First option being the wife but if like yesterday I need the support then we have a couple of offers of “courier” services to get everything where it should be. I continue to take things easy and fell like creating a spin off post about things going on in my head. Prepare yourself for Part III the spin off.
Thursday 11th March
Update is later in the day than usual, but I was up earlier and off to the nurse earlier than usual. As the appointment was earlier in the day. Before I get there, I feel I should bring you up to date for the evening of the 10th as things have taken a slight change. So, to pick up where I left off, no football manager occurred. I did manage to go through the remainder of the week of what is on the Horror channel and select everything I want to record and watch later. Two movies from last night. I spent the remainder of the morning, the afternoon and the evening sat in the living room’s chair. Shooting pain every so often occurring when expected (when moving or stretching) but also unexpected (when not moving and sat here watching movies). In discussion with my wife, we decided that we needed more than just paracetamol to get through the night and a plan was hatched. Let’s start with getting some advice. I called the hospital, many times. Diverted to all parts of the hospital, the number the ward gave me took me through to Children’s A&E who tried to pass me back, but I ended up of random departments all over the hospital. I gave up as it was tiring just phoning. My wife took over and had similar problems before finally getting through to the assessing nurse who I spoke to but wasn’t completely with it. With regards to the pain, she suggested Oramorph with is basically liquid morphine and part 2 of the evening had begun. Phoning 111 to ask for a prescription well the phone dance began but there was progress with each, and a nice adviser got a GP to call me, and the prescription was sent to the local pharmacy. The wife collecting the painkiller direct from the late-night pharmacy. I took the evening meds including the new one and slept like a baby. Up fresh but still a bit groggy as I washed and got changed to head off to the nurse earlier than usual. (most appointment have been about midday but this morning it was before 10am). I saw the nurse and she called another name, I assumed she was running late when a different nurse called me. Having to go through the story all over again. I took more pics and the actual wound itself seemed to be redder than yesterday which may explain the pain. After a little begging she was very gentle to the point where I was preparing the painful final clean and seal part of the process and she said, ‘All done, see you tomorrow’. Wow that was all very quick and done. I was back home in time for medication and those blasted injections and a top up on the Oramorph. Later paracetamol made this cocktail kick in and it watched movies in between dozing off but much less painful afternoon. I chilled for most of it. I aim to be joining my weekly group again this week, I tried and failed last week, well not much beyond a quick hello and then my head decided it was time up. If I last more than 10 minutes tonight, then things must be better than they were then I guess. The meds will help, I hope.
Wednesday 10th March
I expect a short update today, as I thought the pain yesterday was bad, well that was little in comparison to today. I’ve had my wounds re-dressed around lunch time and by then I had brushed my teeth and brushed my hair. In comparison yesterday I was up dressed, washed, changed, and sorted for the day and the appointment was about an hour and a half earlier. Off I go to see the nurse pointing out that yesterday had done me in. The redness around the belly was better than it was yesterday but wiping down the wound was f***ing painful today. Walking out of the surgery today was tough and climbing into the car, equally. I got home and flopped into the chair and here is where I’ve stayed. Throbbing pain at the site of the wound for most of the time. Standing was difficult and eating wasn’t easy either, but we are through it and I’ve settled in the chair watching movies until the kids come home from school. Oh, and for the record it was Fistful of Dollars and The Warriors (should I write a review?). Not right now. The pain in the lower part of the long wound is bad today, worst it’s been if I am honest. So not much of an update today as I will be chilling and popping painkillers for the remainder of it. I feel some football manager breaking out soon as well a little later.
Tuesday 9th March
Going to show my age with a joke. Today Sesame Street is brought to you today by the letters P and the letter E. P is for Pain and E is for exhausted, which sums up the day so far. Waking up, cleaning, washing and just getting dressed today was tough. Used the bathroom, which is a bonus, no Movicol yesterday but that seems to be working. I go and take up my position in the comfy chair. Alarm goes for injection, again it started to hurt so I stopped this time readjusted and then changed position. Hurt much less and no bleeding! Normal meds taken, along with pain killers, and antibiotics. All sorted ready for wound check at the doctor’s surgery. Back to the toilet which very nearly made me late for my appointment. Lots of discharge on the large wound today. Blood it looks like to me and had to explain the weird sensations around the wound. Not painful just extremely sensitive and itchy. In with the nurse the hardness under the skin was still there and more apparently. Cleaning complete and another GP checked. The tenderness around the wound was not as red and I have photo’s today as well (I won’t share on here!). All done I can head home again but it was now that I realised just how much it had taken out of me. So yesterday may well have been the same. I was done in once I got home. Went to make a coffee and couldn’t stand next to the kettle long enough for it to boil. Standing up a little later was a struggle and had to return to the chair. Where sitting here today has been much more painful and I’m feeling much sleepier than yesterday but visually, everything looks better in terms of redness and soreness. This afternoon has been sat and sudden pain in the wound area and a feeling of having to sit because walking is quite tricky today. I am back to the nurse again tomorrow.
Monday 8th March
Here we are with another update with another completely different type of day. I feel I should begin this with the conclusion of yesterday evening, as it maybe of note. I had to sit up until 10:30pm to be able to do the injection to prevent blood clots. Well last night it decided to bleed, and boy did it bleed. Took me by surprise and couldn’t find plasters quickly enough and ended up a bit messy. This morning whilst still waking up I managed to contact the GP surgery and try to organise an appointment. Next was something I haven’t done for a few days, I washed my hair and conditioned it as well. Boom!
Injection time again but this time with trepidation and a plaster in hand. Being honest (completely) it blooming hurt but it didn’t bleed which was a step up. I was all ready to head to the doctor’s surgery. Car journey and the checks all complete just to get into the building. Waiting areas are just great aren’t they. *note previous sentence completely sarcasm. Two without a mask worn correctly but I am not being picky. Anyway, off to the nurse I go, get to try and list everything that I am worrying about. What was discovered was there is an infection there. Asked about having shivers and yes once when I was home on Wednesday evening and again the other day. The wounds were looking fairly good, well the three portals as they were called where the implements went in to do the work. Whilst the long one right down the middle was oozing, red and warm, which ticks all three boxes of what to look out for. There were very tight or hard pockets of flesh under certain areas of the belly which was concerning enough for the nurse to get a GP to come and check me. He was a man I have met before and he gets to the point and I appreciated that each time I have had an appointment with him. He walked in and looked down at the beast that is the belly, its infected get onto antibiotics, any allergies? This was suddenly confusion to me, after every time a nurse walked into my cubical in the hospital, I had to state my name, date of birth and any allergies to give me meds. Now, on the spot I had to think, Penicillin!! Aha the brain still works. Antibiotics sorted; they’ll be sent straight to the pharmacy for you to collect within a few hours. Boom! (Again)
Surprisingly, we had to go to the pharmacy for another reason straight away. That’s ok I am comfy you take as long as you need to, I’ll be fine. Nosebleed. No worries there’s always tissues in the glovebox. No. Aha in the door. No. Central storage. No. Oh, this is a runner. What is in my pocket? A mobile phone and oh thank you absent minded self-there was a tissue. Unfortunately, found too late for both hands and the clean t-shirt put on this morning. The irony being the reason for being there wasn’t available, and we could of headed straight home. Oh well. Home and I’ve spent the remainder of the day on the comfy chair (which is slowly becoming dad’s). Belly wise it has been, itchy and painful for the majority of the day. Head wise I’ve realised that going up and down stairs takes more out of me than I thought. The head spinning seems to occur at the top, but it also happened just walking into the kitchen, earlier. I am not pushing it, again. Chest wise – it feels cold when breathing in and I want to cough each time I take a deep breathe in. Which should be enough to seal the deal for the infection question. Well, for the rest of this evening, it will be the new medication is here, and I am ready to take it again this evening and then I am back to the surgery tomorrow for another wound dress and a check on the infection. That sums up the day, anything else to mention... injection is due in less than an hour!
Sunday 7th March
Well, here I am again giving you an update on how things have been today. Ignoring my own advice from Friday I went out today to visit the haven and isolation location from pre-operation. I think in preparing to go is where I made my mistake. Collecting my bits together I thought it would be good to chase the kids around to ensure they were ready but with mine that involved going up and down stairs a few times after having to do the same for myself beforehand. Then there was the drive there which when I arrived, I sat in a chair for 10/15 minutes before having to go for a lay down. Sleep was not found but I had the lay down interrupted by another nosebleed and this from nowhere. Luckily, I got to the bathroom and no mess, it was nothing too bad and I headed back to the bed to lay down. My dear wife joined me and after asking for a few days she relented and checked my dressings and there are red and warm areas around the outside of the plasters. We then decide to follow the hospitals advice and call them, and they told me to call the doctors which didn’t help very much. After taking 18 months to repair an infected ankle I would (or you could argue – should) be worried. I had one of the largest meals I’ve had since the operation of a roast dinner with plenty of healthy veg but sadly for me I was done by the time the dessert rolled around. That’s normally the best bit for me, but that wasn’t to be today. I felt a bit useless for the remainder of the day as the clearing up was done by others and the journey home done me in. I have a cold feeling on my chest and the feeling to cough each time I breathe in, is a worry. Tomorrow, the plan is to contact the GP surgery and see a nurse as soon as possible, if he or she sends me back to the hospital then so be it. I also need to book for having the clips out so maybe a good excuse to organise something at the same time. I am thinking of calling the hospital again anyway as there was a secondary question that I was going to ask but just having a nosebleed, thinking I had an infection and feeling like poop was probably not the best time to call and have a conversation. Home now, with the Horror Channel on and just sat here doing nothing beyond typing this and watching a movie and the nose starts to go again. Nothing too bad and I didn’t even need to move from the seat, but I am starting to get to a point where everything is a worry.
Saturday 6th March
I am having a good moment or two so thought I would take advantage and get an update out to you all. Pain in the belly area is easing slightly, weirdly it was harder laying down in hospital and easier getting up. At home it’s been easier getting up but harder to lay down. Sneezing and coughing hurts like a b***h. You use the core of your body to get up, twist, turn, sit up, lay down, stand straight, and walk. When you have four holes in that core every time you use that core there is a shooting pain. Admittedly that pain is shorter and dissipates quicker each day, but it is still there as a reminder. I never appreciated a fart or using the loo before this chapter in my life. When someone (who you are very thankful to) has jiggled about with your insides, you are never sure that everything has been put back in the right place. So, when you have wind it’s a sign that things are going through you. After not going "number 2’s" for three days you start to worry. Added to this you start feeling sick then it’s a sign that there is a blockage, and everything is going back the wrong way. I think naturally you start to worry over everything. I had a nosebleed the other day and had a slight one this morning, which was the conclusion of the other one, but you instantly think the worst. I have too much blood. The pain in my chest is a heart attack. I have a hernia. I have an infection. I have this, I have that. What today or more so Friday has made me realise is that this recovery is going to take time. I felt and therefor thought I was ahead on my recovery than I actually am. I was fine in hospital so I will be fine joining my weekly group online and chat and laugh just like usual. I will be able to type this blog to keep people updated. I will pass the time with continuing to type about the gig list I’ve been too. I will watch a movie or sport on the tv. I will take a walk to the shops, may not go in but maybe build up to walking the dog. Sorry Myers but you need to chill, relax, spend half a day in bed and quarter in a comfy chair. You can potter for the rest of it, but you aren’t back too normal by a long chalk and it took the headache from hell and trying to speak on the phone to realise this. Sleep isn’t coming easily currently so I am not resting the way I should be and laying down for however long with my eyes closed isn’t sleeping, despite me trying to convince myself otherwise. I am sat at the kitchen table for the third time today typing this. In my shorts and t-shirt (I am starting to live in them) but I have a dressing gown on, and a blanket wrapped around me as well. How long I can continue this is something I am judging but Friday I gave myself a break. I said my head aches, so I am staying in bed. Much later it had eased so I got up at that point and then went to sit in the chair for maybe an hour. From there I went back to bed. No thoughts of going online, playing games, reading about any news, or watching YouTube. The realisation was I didn’t need to do any of that, so don’t push it. I may start something and not finish but I am accepting that as well now. Like a conversation when I stood chatting and then went sorry, I am going back to bed now. I get told off for saying sorry here just as much as I did in hospital. Right now, I have had a reasonable chilled day, I got up to do the injection on-time. Went back to bed couldn’t sleep. Got up sat in the comfy chair went back to bed, and repeated that routine. Re-learning what your body is saying is tricky as you have previous messages which are now not the same. Stop saying sorry and just go and lay down is not a problem – I just had to learn and accept that. Not replying to a message of support or love doesn’t mean they will be offended but it will if I hurt myself in forcing that response. So, today I am chilled, and this is the longest update for a while and I feel ok, but ok is fairly good compared to how I was at the start of this week.
Friday 5th March
I was going to go back over yesterdays update and re-write it and correct it, but I figured you can work out where I was coming from and why it was the way it was. I basically dictated the whole paragraph into a word document and then cut and pasted into the blog. With one eye closed and using one hand. Yesterday was not good, headache was horrid from minute one for the rest of the day. Headache is still here today but much easier and slightly more paracetamol than yesterday and I am able to sit on the bed and type this without the dictation software trying to translate my slurring words. Somethings have changed in that I don’t burst into tears every time I see my dog anymore which is a bonus, but I did have a nosebleed today which is a worry, but it also reinforces the sinus issue I had before going into hospital. BP in hospital was the lowest it has been in ages, but I haven’t checked it again since coming home. So, to give an update of sorts I have four wounds on my belly one long line from just under my rip cage through my belly button to just underneath. I also have three portals where they inserted the implements to do the work the long one was for pulling stuff out. The tumour I had has been removed so it’s now a case of seeing how things are afterwards and whether chemo is still required. For me, the immediate thing is to recover, and I think yesterday I assumed I was much better than I actually am. In hospital its warm and cosy and no open windows. I came home and felt cold straight away, I had two blankets over me in the seat and a dog that used my belly as a launch pad when there was a knock at the door. All this probably didn’t help to contribute to improving. Worrying about whether your bowels are twisted and cannot work as you haven’t used them. Feeling sick, having a headache, feeling cold but thinking you planned on walking the dog and playing computer games all afternoon is suddenly a shock. You’ve been walking around the ward no problem but now you cannot sit up in a chair without feeling rubbish. This recovery is going to take time and I think yesterday (slurry words and all) was a bit of a reality check. I still have pain behind my right eye but its manageable today. I am able to type this as opposed to dictate with my eyes closed. Little steps are needed and sometimes I need to appreciate that. Hopefully today is the start of that.
Thursday 4th March
So, today's update will be a case of I will not be correcting spellings or punctuation or grammar or probably anything at all I have not had a good day, but I will get to that after explaining yesterday trust so. So, came home yesterday was picked up about 4:30 PM I'm driven home manage get upstairs come back down walk around have something to eat everything seemed quite well was quite good positive felt good for everything was fine about for everything is going in the right direction still hasn't pooped which was a worry for me but that resolved itself a little bit later in the evening so to me everything was good. Men today woke up with the best way I can describe it is like a pressure headache above just above my right eye I thought I may have not worn glasses enough in hospital when responding to phones and text messages and stuff like that so put my phone on but my glasses on. When the stairs had breakfast I had dinner I don't this evening but my head and just behind my eyes just killing me right now I don't know if it's cause it's the light the light seems to affect it looking at screens affects it to the point where I think it was it was around on Wednesday but he seemed to clear up as the day went on but today it's just hung around and it's not going her paracetamol sure I've drunk enough I think I've drunk no yeah I've drunk enough so I don't quite know what what's happening but it's having an effect history is dragging me down in terms of making me feel worse I don't know if it's just a cold felt bit cold when I first came home at to wrap up warm blankets and stuff and then this morning I was cold again but I don't know right now head killing me I'm dictating onto the laptop so hence the grammar or punctuation running out but I thought try and get something out for today and hopefully things will feel better tomorrow but afterwards he really.
Wednesday 3rd March
I think I had an epiphany this morning, I awoke around 5.20am before checking the time. At 5.26am there was silence, for a change. There was darkness (this could have been that my eyes were closed). There was a stillness at this point. There was no pain, there was nothing , I was at peace with the world and it felt like at just that moment it was at peace with me. I didn’t want to move and break this connection this felt like perfection and it was a nice place to be after the few days of pain, poop and worry. Here was a single central point of stillness. For 15 minutes I remained there. Breaking the bond, I moved my right leg, my stomach reminded me that you have had some major procedures in the last few days. It subsided and I returned to the silent darkness trying to remember that exact spot I was in and not wanting to move. Around 6am a nurse arrived but I didn’t want to acknowledge her existence as it meant this real world would tug me back in with its pain and stress and worry. Unfortunately, it did as blood was taken. She was surprisingly gentle I didn’t feel anything, but I have bruising now. Quickly followed by the observation tests of blood pressure, temperature, pulse, oxygen levels. Everything there was positive, oxygen was back up to 99% but this was lower before. The day had begun the usual wave of people came through cleaning, medication, painkillers, and breakfast. Now this whole business is undignified, but farting is a good thing, and this hadn’t happened until this point between nurses visits which was a relief. Next on the list is the follow through, which hasn’t happened yet. Even now this is the case. Laxative have been given and they are talking of going home. Belly is doing somersaults now but it’s not playing ball. This could all change after the laxative and I am sure it’s a mental thing about seeing my wound and those clips. Looks like a zipper and I am worried of going to pop. Anyway, that’s where I am so far today. There are rumours about going home today but I will wait and see on that one. Poop may need to happen, or I’ll be going with a set of rules to follow or shout back to the hospital with any worries. There you have it, that was the morning that was and apologies to the young ladies I texted in the middle of all that making one cry (sorry!). I just had to get somethings out and you got it!
Tuesday 2nd March
I remember seeing most hours through the night. 11pm, midnight 1,2 and 3 I may have slept through 4 but saw 5 and nurses were around by 6. Breakfast was early and I’ve had to go for a soft diet so rice crispies with plenty of milk. Orange juice and I saved my croissant for later. They get up quickly and try and get you walking. Which was successful – although very painful I sat in the chair and had the catheter removed which allowed me chance to wash up and feel a bit better than I was. Then they start chasing you for urine. I tell you the nurses have a thankless task. Morning, I need to pull tubes out of you then you can thank me by peeing into a bottle and handing it over. For me and the news is that the tumour was removed and the surgeon was positive with the results. I am guessing that once things settle down there will be tests to see if anything is left before making the decision on chemotherapy but there is a bit of hope there that I may not need it. There is also a risk of wishful thinking on my part. I think the pain and lack of sleep got the better of me after dinner which is early at 11.30am as I had to give myself an injection against blood clots and I couldn’t do that before so was really worried about it. I managed this time and I must do it again at 11pm tonight to prove that I can. Brief update I know and after promising that I would keep going as much as possible. In summary news is positive, pain is very positive and everything else is ticking along quite nicely. I will try and keep it that way.
Oh, and I have to say that the staff here are fantastic, so far I have been looked after very well and everything they said to expect had happened. I still don’t like dinging the bell for help as these people are busy. I for one appreciate the NHS and can understand why this was delayed as priorities change.
Monday 1st March
Woke earlier enough I thought I’d try and watch the sunrise but pulling back the curtains there wasn’t any sun. So, it was back to the day job of simply getting ready. All done in time to watch some TV before heading off to the hospital. We get there just before 7am which was my time to arrive. It appears that the daily batch of people arrive at the same time. They then get the operations done as the days goes on. I was first up which I believe is due to my size and the details of the operation. I was gowned up and various preps done before walking down to the operating theatre. Having to be awake for the epidural, making this the second time of seeing the inside of the operating theatre. Its always a busy place with people in and out. Which you would expect. I am not sure of the timing, but I would assume it would have been gone 8am when everything blacked out and I honestly knew nothing. The next time I saw was just after 4pm and I was the only one in the recovery room (at the time) feels like I had monopolised it. I remember being as high as a kite and basically trying to crack jokes. Everything I said was an attempt to be funny. I got one laugh when I discovered I had a Catheter and I said how surprised I was that they managed to find my penis. The many other attempts at jokes fell flat as I couldn’t be heard or couldn’t repeat. I was back on the ward at around 6.30pm. I had my mobile phone back and was slightly more sensible by then which was a good thing as I started texting everyone. I had some biscuits through the evening and was then reasonable comfortable but lacking in actual sleep through the night.
Sunday 28th February
9:00am - It’s 'P' Day!
Which could be taken two different ways and you may see a lot more updates today as the day goes on, but I am going to go with ‘Prep’ day. Awake at around 7.30am watched some pointless wrestling videos got up and made a coffee which gave me a mini face steam and to be completely honest helped a bit. Loosening everything a little bit. I then fired up the laptop and mooched for a bit. Before at 8.40am starting the preparation for the day. First meds start at 9am and is a real slow process as it takes a couple of hours to drink a litre of liquid. First taste as it has just gone 9 is that it does not taste very nice. I had just made another coffee and another lemon squash which I am breathing in one and drinking the other. This all tasted pretty good! Seeing as it was my choice, I guess it would have. First mouthful of meds and it looks like water, feels like water, acts like water, tastes like ****. Which I could be more descriptive, but it tastes like it’s going to leave a nasty after taste as soon as you taste it, and it does but not as badly as you (well me) might think it would. The after taste doesn’t linger too much after the initial swig. OK I am only a couple of swigs in and I have a full litre left to go before making up the next batch. Yeah! I have so been looking forward to today - Not!
10:30am
Less than a glass left of the first meds and honestly nothing. Some belly burbling but nothing of note. Was waiting to shower after it all started but nothing, not a thing. I am thinking I might pack ready for tomorrow but first I think I will mix up the next batch ready for the next two hours..
12:00pm (Noon)
Well for those that are interested the explosion happened at 10.58am after giving up that anything was going to happen. I wanted to shower after, and the wait had just got to the point where I just said stuff this, I am going to have a shower. Well, I was in the right place at the right time but had to change direction when heading for the shower. I haven't eaten today and right at the second, I do not feel hungry, but I will go and have some soup in a mo. as I am allowed something. I should be halfway through my second litre of meds, but I have slowed down so need to drink a bit faster to catch up. The stomach is singing to me now but nothing more than that. It sounds like there is a thunderstorm or rock concert is happening in there. I will add as my mum will be reading that no pain. Except for the head cold and Cannibal Corpse Concert happening in my stomach at the moment, everything else feels fine. Honestly! No further question's required. I am going to try and eat now and then report back more later.
2:45pm
This part of the update actually started as the 1.30pm update, which I have begun about 20 minutes beforehand. It was not concluded before I was dashing off again. I had eaten some tomato soup and a lime and lemon jelly which was more fun than tasty to eat. I had to chase it around with a spoon. I am thinking of going back for more soon. I may have a lemon squash and settle in with an afternoon and evening of water, but this afternoon has been different to the morning. As the meds kicked in about 11am and they have been working correctly since. I still have about ¼ to go which should be gone by 3pm and I will go for a jelly now and then take other meds due at 3pm all together and then see how things go for the next hour or so then decide if I should take the last sachet of this foul-tasting business. I will try and update again later.
11:30pm
I spent the afternoon watching movies and talking on the phone, at one stage I had 8 calls backed up waiting so me being me and able to speak for that length of time I managed to pick up messages of those I didn’t get chance to call back or I’ve spoken to everyone. I had WhatsApp, Messenger, Text, mobile and landline calls all at the same time. I feel proud to have kept up for the most part. As for me I feel a bit cold now. The blocked nose feels a bit better than it was, I am feeling tired but quite honestly that could be down to no food today beyond a soup and some Jelly’s. I am going to bring my laptop along tomorrow so hopefully I will have the opportunity to keep this going and I’ll get to listen to other stuff on YouTube and other stuff. My entire being is linked to Wi-Fi so I hope the one at the hospital is enough to keep me going. Speaking to a nurse on the ward today she has warned me that the doctors may send me away tomorrow if this cold is bad enough. I am confident that this isn’t Covid-19 as the swab was just on Friday and I have been careful and isolated. This is a head cold that will linger in my sinuses for a while. I just hope it’s not bad enough to cause concerns or stop it from happening. I could do without another day of emptying like today. I can tell you. OK tomorrow is just half an hour away and I want to pack all this away ahead of the morning as I will be in a panic in the morning and not thinking. Need to remember no meds tomorrow. None and if I want water I have until 5.30am to enjoy such delights. Anyway, that’s it for today hopefully I’ll be able to post at some point tomorrow. Love ya all!!
Saturday 27th February
Here we are the day before, the day before the operation day. It feels imminent but awaking today I have good and bad news. I will start with the bad as that’s the order I got them in. I woke up this morning and literally could not breathe through my nose. It was blocked and panic instantly set in. With the what if’s and I decided that today would be a keep warm and do all I can. I am quite sure the paperwork tells me not to take any meds during this time, so it’ll be soup and steam for the day. Potentially hot spicy food as this will be the last day that I actual food until Monday night but I suspect it will be Tuesday. Even on Tuesday I am not convinced I will be eating solids as I am not sure what I will be allowed and for how long. This is a major operation, and I am aware of that, what I am not aware of is what happens next and I assume the doctors will be the same as they will have to decide based on all the information to hand. Whilst getting ready for the shower to start the steam treatment and literally as I was stepping in my phone rang. Currently no matter what I am answering it. Hello! Is that Peter? Yes. Got details agreed and I was told that the Swab test completed Friday (so within 24 hours) was negative and I don’t have Covid-19. Have you had any symptoms since Mr Slade? No but I have a stinker of a cold, will that change anything? I don’t know, speak to your Anaesthetist as soon as you come into the hospital. Ok will do! I don’t have Covid-19 and I have remained isolated since so fingers crossed this cold is the thing to kick in just a day will do all I can to get the solid moving and hopefully we can get it steamed out. It all feels very imminent right now and its two days away.
The night is drawing in and the time left of being able to eat is short. I am thinking of eating for the sake of topping up ahead not being allowed tomorrow. I am sat here not hungry but just thinking about what I can eat. I flick from food to what I need to remember tomorrow. What needs to be packed ready, what medication needs to be taken when. What am I allowed to have and what I am not allowed to eat? The restrictions are somewhat confusing, but we'll get through them won't we. I am breathing now, but the right side of my face isn't working. Historically when I get a cold if bad enough it would usually finish with sinus issues. Right now, it appears to have gone that way, the issue is that with those sinus issues historically it would hang around for a while and now I am thinking about whether this maybe an issue for the op. This could just be a case of worrying for the sake of it. Almost a case of trying to find something to be a potentially screw this up, admittedly looking to find ways to fix it but you do find your mind playing tricks. Anyway, I think a bag of crisps my suffice.
Friday 26th February
Morning has broken and it’s a beautiful one. Sky is cyan blue which is making it very crisp and chilly out there. To give you a full diary update. Playing games last night, I was completely crap at Schrödinger's Cats, but we completed ‘The Crew’ which was amazing. Normally in a strange bed I will not normally sleep but it was a case of just like usual in that I struggled to get to sleep but once there I was out until the alarm told me not to. Now up, time for meds and then get showered, dressed, and ready for the Covid-19 test. However, my cold is really sticking it too me at the moment completely blocked up which is restricting my breathing I am getting worried about that as I don’t know if that is going to affect anything. Covid-19 Swab done just need to sit out the remainder of the day and then Sunday is prep day with 12 to 15 meds to take through the day and live by (or in) the toilet. My concerns remain the cold that I have, and it is affecting my breathing and hope the anti-biotics will kick it out. There is some phone call to catch up on today but back to the gig write ups to get the brain going seeing as I can’t get out for walks.
OK so after the test today we have settled into a chilled-out day but then I had a visit from my wife and daughter which was weird to stay distance from them. I didn’t stay away from the dog though she got the cuddles that probably the others two wanted. Watched the sunset and later the moon was bright and full which was nice to see all five of them. This evening my son called and to be honest he was doing his daily download which he would normally do when the week is done, and he is still hyped up from the day. This call took nearly 40 minutes and it got me all emotional. As he talked about the operation for one of the first times and hoped that it all goes well. I could of easily of gone at that stage but held it together for him and I am now in a quiet spot again. Typing this trying to hold it together. They are all my world and speaking to him tonight made me worry as it brought a lot of things back into focus. Emotions may be high as I had an email from work explaining the redundancy, they are offering me for the end of the Fixed Term Contract. Which is playing on my mind, they know when my operation is and sent the email the working day before it. I will try not to dwell on that and focus on being positive which I should, but things will have to change from March, and I can think of a few things that little redundancy could be used for. Which could in turn improved things in the future.
Anyway, I will be going back to where I was about an hour ago in the attempt to reset my brain and start over. A lay in tomorrow would be nice, well a day without alarms if nothing else would be a good start. Whether I sleep through is another subject. We have a chilled-out day tomorrow then a meds filled emptying day on Sunday before getting to the hospital just as the sun come up on Monday morning (literally it’s that early). I will try and keep this updated whenever possible as I am sure the concert post can be updated later but not knowing about the Wi-Fi in a hospital and how well I am going to be feeling after the op is another thing. Strange but one question I haven’t asked is about what I can eat afterwards as my instinct is to not eat again whilst it is healing but that is a silly idea. It might be a liquid diet but not the good kind or it could be mash everything up, I literally don’t know how things will play out from here. I will just go with the flow which I have done all my life and whatever will be, will be and all that business. For now, I am going to get back to a movie I left an hour ago, so I am not going to have a single clue what the hell is happening!! Oh well I’ll just go with it, as always.
Thursday 25th February
I am all packed with enough bags to make an aeroplane fly in circles with the weight. Today I leave home and go to stay down the road from the hospital where I will have my own space and bathroom with what is in stall for Sunday this can only be a good thing. I may give hourly updates on Sunday as I am sure you would want to hear my toilet activities. OK maybe not. It all feels awfully close now, knowing that I must pack this laptop that I am typing on into a bag as soon as I finish this update. Then it is a short drive and then the countdown begins in earnest with the Covid-19 test tomorrow. The rests should be available by Sunday where I can try and get some sleep before being up before dawn and heading to the hospital just as the sun rises. I will aim to update this again later, but I have my weekly group and potentially this is the last one for a while as I will be in hospital next week and recovering thereafter. I may have concentration elsewhere.
As it is so late this will be a quick one as today has been good, I have silence in the house here. I love my kids, but they can make noise and ask questions just as you are thinking of something well here there is silence, and you cannot hear the neighbours at all let alone worry about the comments you might get for standing in the garden let alone when they video you for being out there. Anyway, last hospital procedure before the operation day tomorrow (well today actually) and that will be the Covid-19 test which will then leave Saturday as the last time I have food as Sunday will be down to clear soups and jellies. Then only water for the afternoon and water in high amounts as well. I'll be living in the toilet one way or another! Hopefully update tomorrow.
From 11th February to 24th February
With so much other work and issues going on this will be difficult to try and remember the last fortnight and the rollercoaster of emotions that was included with the posts but I need to get this post redone so I can then start to update again. So, in the last week I have finalised my funeral plans (just in case). To be honest it was something I was worried about, so it has given me some form of peace of mind to get it sorted. I have even organised for a live stream should the worst happen. I have heard from the charity I work with to get an email out about the potential of setting up walks again in the future and apologising that I may not be able to support with that one for a while. I’ve organised a quiz and hosted it on Zoom and called Conner MacGregor, Colin for some reason and the spell checker changed it and I then copied it onto my question sheet, so I read it aloud as well. D’oh! I had done some serious walks with 15.6km walk followed by 11km and a little 8km walk as well. I know I would have moaned about the lack of opportunity to keep walking going as the isolation rules meant that I am not allowed outside the house which is so annoying. I still haven’t emailed Bracknell Forest Council as this was advised by MacMillan and I did mention what great support MacMillan Cancer Support group is and what support they offer, is fantastic. I hope you never need them, but should the circumstances present its ugly self then they are simply fantastic people to get help, support, and advice from.
On a happier note, we had our son’s birthday to celebrate which consisted of him getting what he wanted for his birthday – Money. As well a weekend of takeaway food. Which really didn’t help the diet at all. Which reminds me I had some challenges to update the was the challenge 30 which was going well (I’m guessing it isn’t now!). The miles challenge has stopped completely which I hope I’ll be able to pick up once I am out of hospital. I have not been offered the vaccine yet but would not be in the position to take it yet anyway. You never know post op I might be pushed up the queue. There was a third challenge which I assume was the whole thing of trying to beat this thing. Well, that is the main thing and that all comes about in less than a week’s time. With the operation to remove it from me and then see how everything seems thereafter. In terms of what will happen after I really don’t know. I had an OT appointment last week as my work don’t believe I should be off sick and probably don’t believe me that I have this in the first place. They called today which I mentioned before. They are basically forcing me out which is slightly unfair but as I was on a fixed term contract, I am not sure what I can do about it. I might have a chat with my friend who works for the press they might be interested in some of the conversations I’ve had with my employers. Anyway, that is low down the list now I have a month left there and I have a week left in my countdown to my operation. Isolation is in full affect and it is getting me down now. The family have had it tough not necessarily coming to terms with everything but more that they are worried but cannot do anything about it, so as a result they are becoming snappy at each other and little things which probably wouldn’t have mattered a month ago people are taking offence at. I have said many times that its them that I am worried about as I will be at the centre of this storm and although difficult (and right now a pain in the backside) I will be looked after. It’s all the running about and worry without having any control that will become the issue. With that in mind I will be staying away from home to free them from the isolation rules, it’ll mean that they can go out and have a walk and go to school (yes some are still open) without the worry of bringing something back.
For me I have had a cold (or a touch of a flu type thing). I love that people say that! A touch of the flu if you had the flu you would know about it! I haven’t had the flu, but I’ve had a cold and at times it has been a stinker. Head swim and the odd dizziness for a few seconds here and there. This was with me when the isolation period started its eased a bit when coming into the second week but now it is concentrating on my nose as it has developed into a runny one. At this second, I feel cold and frustrated that I feel that I must do all this again. I’ve spoken to a few people that know about this situation but then I haven’t really spoken about the subject rather than change the subject and dribble on about some random things that has my interest. I would like to get more done on my gig’s list post but that is really taking some time. Anyway, I will create this new post now (at 1 am) and then I will be able to get new updates in a single place much easier from now on.
Thanks for your patients and sorry for the previous post disappearing but it was not my doing and I’ve done my best to pick up the pieces.
Wednesday 10th February
This is not going to become a daily diary update alright! but I am going to update again today. This is because I did not have a good night. After the walk I may have got a chill or something but I now have a full blown cold. So because of the blocked nose I couldn't breathe when laying on my right so struggled that side. Laying on my left meant the tummy hurt so I don't think I got more than two hours sleep. It has left me tired all day and after the blood test today I headed into a supermarket to buy cold and flu meds and wandering in there I went so dizzy and light headed I thought I was going to get slapped in the face by the floor. It has happened a few times recently and the tummy has been gradually getting more painful. Should I be getting worried? That I don't know but there is nothing I can do at this time. I will dose myself up with medication and see if I can't catch up with some sleep tonight as I will be keen to get out for another walk tomorrow and get some more miles on the clock. Anyway as already mentioned this won't be a daily update but I aim to be back with another actual update as soon as possible. Current belly pain level is about a 6 out of 10.
Tuesday 9th February - Update
Ok update on the 1.20, this has been achieved so I can tick that one as done. The 30 challenge is now 24 from 30 which is positive. Walk wise today I walked for more than 7 miles and came home from the snow and crappy weather and I was already cold and wet so I dropped off some stuff including the boots and put on some trainers picked up the dog (not literally) and turned around to head back out again. Finishing the day on .3 short of 10 miles. Which appears to be the longest walking day for sometime. My legs are aching like no one's business since coming home. Hopefully means I will sleep tonight, as sleep appears to be the main thing affected by this whole situation. I seem to sit up finding excuses not to sleep. I'll watch movies write blogs and anything else. I think a lot about nothing and worry about lots of things that I cannot do very much about at the moment. Is this just a form of worry well quite possibly. Tonight I am to put that right. Whilst on that subject I will let you into a secret I tend to lay on my right now as the throb in my belly hurts slightly less there when sleeping that side. Anyway I have put something on Facebook about this walk as it was a really good day walking. I got some distance and didn't feel that tired at the end of it. Tomorrow may be another story and tonight the legs are feeling it already. Tomorrow I have a blood test about the diabetes - none of this other business, it is just to check to see if the medication has made any effect.
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