I will begin May's post with the same targets that I listed on the previous post if you want more details on them go and check out Part III. Following the targets, I will explain the Chemo-cycle that I am following to help clarify to those that are confused with how I've tried to explain it to them.
Targets -
Challenge 33 (and then beyond).
Last check 31
Find a new job (made redundant on 31st March).
Nowhere near
New car & start driving again (legally must recover before I can drive).
Half done – I am driving again 12th April 2021.
Get through the Chemotherapy
(25% Done)
Get to see a game at Plough Lane (waited nearly 20 years) –
COMPLETED Tuesday 18th May 2021.
Get back to leading the Walking Group.
Still quite a ways off
Get the garden sorted.
We have quotes coming…
Tourette's Action Walk
Training not started.
Take my family back on holiday to Scotland.
NOPE
Take Mim on a tour of Scotland (hire car and schedule required).
NOPE
Raise a pint in Bristol again (even if it’s just one)
Ideas are forming.
Major walk to be completed, in aid of MacMillan (this maybe much further down the road)
HA HA HA.. not even close!
Get the house repaired and tidied up and redecorated.
Potential quotes coming for a professional to do it!
Enjoy life (it’s the only one I got!)
Failing at the moment…
Chemotherapy Cycle I am following -
Before I begin, I am not going to give you the names of the meds I am taking as they are long names that I know what are for and should be doing.
Day one is the sledgehammer to get things going. An infusion of clearing fluids to ensure its clean and clear. This is followed by glucose mixed with boosting steroids which help the body cope with the actual chemotherapy medication. All the while I am being monitored and tracking of the bodies vitals to ensure nothing to worry about.
After day one with have a further fortnight of tablets of chemotherapy medication which are a handful. Four large tablets in the morning and again in the evening. For the first few days of these I will be taking further steroids, glucose, and nausea medication to ensure the body is able to keep going with the main meds. From there I have a week's medication holiday before this cycle begins again.
All the time this is going on I will be keeping an eye on the side effects as these could lead to major issues. There are instructions for any of these kick-off but to list them below.
Diarrhoea
Nausea
Vomiting
Mouth Ulcers
Hand-Foot Syndrome
Fever or Infections
Chest Pains
Hair Thinning
Highly Sensitive to Temperatures
High Risk of Infection
Somethings are obvious to deal with like chest pain may mean a heart attack so get your butt to A&E the others have different things, but I won't list them here to bore you anymore. I promised to clarify, and I hope that has done the job.
Latest Update:
Saturday 29th May 2021
Hello again, my apologies as it’s been a few days between updates. The reason appears to be that I have not had the energy to be bothered. It has not been a great week; I have been feeling a bit crappy. The pain in the right hand/wrist area has continued and I have pain in the tummy again which is not great. I just feel bad but not like I am completely awful, but I would describe it as I am just low. I am tired all the time, if I do something then I feel shattered for the rest of the day. It is just frustrating I guess, as I want to do things and then after doing something that felt like nothing six months ago leaves me done for the day. I just feel done in; it is not a good feeling. I am eating all the wrong things at the wrong times of day, and I am putting all the weight back on, but I am unable to burn it off with walking and walking like I was in January. I did a 3km walk today and nearly fell asleep on the sofa as soon as I got home. I wanted to watch the football and managed to the 70/80 minutes into the game and struggled to keep my eyes open. It was nothing really and a few weeks ago this would have been a breeze but today it done me in, today.
Enough moaning. Thursday was games night with the group which I managed to join and finish that although not feeling great all day. Friday was chilled but we did manage to go shopping for one of the targets above, but no decision made yet, but things are moving. I will be getting there, and things are happening, but I need to be patient and rich (so 50% there I guess!) we are getting there. One thing I have noticed, and I don’t know if I mentioned here before but the whole Euro 21 championship will begin and end whilst I am on chemo so I could in theory watch all the games. I have idea’s forming. To do something about it. Not sure what but something. I have mentioned about today so there isn’t much more to say, I had a bit of a lay down and I will be watching the Champions League Final tonight and then attempting an early night (well for me). Oops my evening meds are due so I will wrap this up with the aim of doing more updates in the future.
Wednesday 26th May 2021
I shall begin todays update with a personal message. Mum I did try and call you today, but it wasn’t answered, and I was unable to leave a message… but I did try!
OK many updates recently haven’t really been much of an update but what felt like paragraph followed by the same paragraph with the same sentences but in different orders. Today and more so yesterday will be a bit more of an update as things have or will be changing. Slightly. Firstly, the anally retentive logging everything has gone for a burton about 5 days ago. I was writing everything down to remember which meds I’d taken and what was due. Along with temperature and blood sugar levels whilst logging poops and general feelings. It dawned on me that it really didn’t benefit anything or anyone, just keeping a general eye on things. Stuff it I didn’t feel like it either, so it’s gone in the bin and I’ll try and remember things. My ingenious idea to take the chemo meds is to, sleep with the morning dose next to the bed. When I am awake enough, I take the medication and then set a countdown on my phone for 12 hours. When that alarm goes off, I take the next dose and I am done for the day and it all begins again the next day. This appears to be working as I sit here with 43 minutes left on my phone. The rest of it I can check when I can be bothered, and I’ll just try to concentrate on being positive and try not to dwell on the sh!tty last few days when I just felt sorry for myself.
I will say that this weekend and beginning this week. The right hand and the wrist haven’t been right, even painful at times and swollen. The left hand feels tingly whilst the right is prickly, I am a lot more susceptible to the cold feeling with lots of things biting me this time. [There is a side affect where cold things really make you feel pain so eating ice-cream actually hurts. Drinking cold drinks makes you feel like your throat is closing. - I describe the sudden pain as being bitten as you don’t know when it’s coming it just gets you out of nowhere]. This keeps happening where the first cycle saw me bitten two or three times (from memory) this time much more and randomly. It is not great and the other side affects are kicking in as well. I think the cycle of not being able to drink cold drinks so drinking coffee which then keeps me awake all night to the point where I am over tired the next day. This has had me feeling more tired and just doing anything is leaving me shattered within minutes. Taken the dog for a walk then means laying on the sofa for a few hours. Yesterday I mowed half the lawn literally half the grass and I was shattered. I was done and couldn’t function for the rest of the evening.
I know I will be jumping around a bit now but today I was up around 9 to take my wife to the hospital for an appointment. We had a meal out and I returned to finish the other half of the garden I went to Tesco’s twice and driven around as well. I carried shopping and I was completely done in. My hands were shaking just trying to do simple things. I had a pint glass with an orange squash in it and honestly, I couldn’t lift it! My hands couldn’t get it off the table without it shaking wildly. The wife gave up and got me straw. After finishing the drink, I dropped the glass and smashed it to bits in the living room, so it didn’t really matter either way did it. This kicks in the feeling sorry for myself again and I don’t want to go down the depression route as I have been there and seen enough of other people to see how bad that can be. I never used to be like that, so I want to snap out of it, but it is just a bit trickier than usual. To ensure I have covered everything here is me listing everything.
Brain not working as it used it. Forgetful and confused.
Hot and cold – One minute one then the next the other (can’t seem to win)
Dizzy – keep losing balance randomly.
Tired – Sleep wakes up tired and repeat.
Hand and Wrists hurt – tingly, prickly, pain and swelling.
Lethargic – just cannot be arsed to do anything.
Flat – bit like lethargic but walking 10 yards and I need to stop and lean on something!
Grumpy – I am snappy and horrid to live with at the moment (well that could be always, but I am noticing it now)
Motivation – That has just gone...
That I think covers it.
I had a call with the nurse who covered the last infusion who was asking about the pain in my wrists and the prickly feely in the fingers. I tried to be honest on the phone and said it felt worse than last time, but I am sure it is easing compared to the initial first few days and the decision has been taken to put in a PICC line. This is something I have had before when I had 18 months of recovery for my torn Achilles and trying to combat MRSA. I will use a fresh paragraph (Below) to explain what a PICC line is. Read below and come back if you want to. I don’t really have a problem with one and I always remember the nurse I was chatting to in Wexham Park years ago who said she would love for everyone on the ward should have a PICC as soon they come onto the ward as it makes their lives so much easier. You need an infusion? Clean the plugs, attach the tube. Bosh. Done. No worries of kinks stopping the machines, no worries of the tube hurting the area around the vein and causing the pain that I think is going on now. I honestly don’t mind about the PICC as I know that when it goes in, I will stop counting up the days of chemo and start counting down the days to the end of the therapy. It will be on ‘Hump Day’ that the PICC goes in, it will be the beginning of Cycle 3 which means 2 down and 2 cycles to go. This feels good to me. One thing that I see what the hospital is worried about and one thing I didn’t realise is that the prickly, cold equals pain thing is that there is a risk that this could be permanent and that is what they are worried about. I did not fully appreciate that when I am going it’ll go and if not, it will be two more sessions and then it will be all done. Now it is a case of that may be a bit wrong Mr Slade you could be bitten every day for the rest of your days… That puts a different spin on things doesn’t it. I hope I can live with the PICC line as this will be for a month and a half and then more importantly it should be all done. We could more on from there, I hope.
A PICC line stands for a Peripherally Inserted Central Catheter, which is basically a long tube that for me last time got inserted into the upper part of my right arm. Under the arm essentially so standing normally sat between my right chest and arm. It was pretty my covered by my t-shirt. The tube itself is inserted into a vein via an ultra-sound system to ensure the needle is in the right place. The tube then enters the vein and goes up your arm over your shoulder and sits above your heart. This way any infusion that is put in pretty much goes straight to your heart and your heart does the work of pumping it around your body – clever right. Well, that is what a PICC line is, the risks relate to infections at the site of the insertion and blood clots in the tube. I am aware of someone having one and going water skiing try avoiding infection when in a lake next door to Heathrow Airport. The fact is that infections can appear randomly and its very tricky to spot the risks. Being careful is the main thing.
Onto the One question I am always asked… How am I doing?
I would say OK. I am not happy but to be honest I could, and it could be a lot worse. I am tired and fed up with it, but I am not losing fluids are staying where they should and leaving as and when they should also. This is all positive and I guess I should appreciate those more than I really am. I have a sore throat, and this makes me worried about the ulcers that are coming. The short answer to that question is I am hanging in there and finding some ways to be productive.
Monday 24th May 2021
I was going to say that the week begins but to me now there are no weeks. Mondays are the same as Wednesdays and Saturdays or any other days of the week. I think it is starting to get to me and I need to find something else to do and more so its starting to get to me. I want to do things and they are not possible. The weather doesn’t know what it wants to do and now I am in a similar position as I don’t know what to do for the best. I went into this part of the process full of fear, worry but a clear mind and a clear path through but now I don’t know which way is up and what to do for the best. Organising the tax side of things was clear, sorting the money side of life equally was a just do this and that and everything will fall into line. What I hadn’t planned for was that at this point I couldn’t be arsed to do anything. I feel tired and confused by everything. Logic seems to go out of the way, and I am hiding behind games as I don’t feel well enough to try things as simple as going online and updating my tax situation. I am out of work and nothing coming in… That I am not panicking about as we knew that would be the case and that situation has not changed, however I will be needing to find a job as soon as the chemo finishes which then means I need to do the jobs around the house that I wanted to do. The issue is that I don’t feel up for doing the tasks that I’ve set myself. Even updating this has become tricky as I am so busy doing sod all and achieving nothing all day. I think I am venting today, and I guess its better to get it out in the world. I feel fat as well. Which I will come back to in the next paragraph, but as I am investigating my inner thoughts today it must get a mention. I am going around in circles for a week of typing this gibberish.
As mentioned, I am moving onto a new subject, but firstly I will point out that this keyboard is putting spaces in before I do so this whole section is having spaces and double spaces in placed before I am ready for anything meaning I am having to go back and change everything every few seconds and its annoying. This could however be down to the fact my wrists are still not right and the prickly feeling in the right wrist is slightly better than the pain that was there before. Cold hurts this time and I don’t like it. Taste is horrid all the time which brings me into feeling fat mentioned above. Firstly, I may look it, but I am not stupid I know that I am fat but even us fatties do not necessarily feel fat. I had lost weigh particularly with the operation I did about a stone. I have however put that back on post op. This I believe is a combination of lack of exercise and a totally cr*p diet. With no taste I am eating stuff I like and can taste like sweets and sugary things. I cannot take cold drinks and if I do (for example to take meds) I will take a coffee to balance out the coldness. Which means I am naturally heading to the kettle more often and drinking coffee and coffee after a few coffees. This then leads into not getting into be until 3am or later I am then getting up and feeling tired and unable to do anything and the cycle of poop continues. I need to break this cycle where do I start?
I wanted this blog to encourage people to know that I am doing ok, and todays feels like just poop and a rant. I wanted to get it off my chest and we will begin again tomorrow as I think I need to look at the list above and hit a reset button and stop feeling sorry for myself and get me finger out of whichever hole its in and buck up my ideas. I will start tomorrow!!! HA!
Saturday 22nd May 2021
I will begin with an observation isn’t it great that Covid-19 is now done and finished with a not a worry for so many people. I assume that’s the cased based on the number of parties happening today when I was out walking. (Yes, I have been out walking – but more of that later!). The neighbours had a full-on kids party today which kicked off around 9am and was loud and happy and I don’t really have a problem with that. The number of people visiting on the other hand is a worry. When I am forced into a position of being scared to go out or do anything and the rest of the country has just flicked a switch and treating the world is back to where it was 2 years ago. Well, some of us are not ready for that. Ok I’ll stop bitching now and return to why I am typing this in the first place. I have not had a great chemo this time with much more pain than last time and the end of the steroids means that the slick texture and taste to everything is being to return just like last time. This time however it has returned with added pain and the sensitivity of cold really kicking in this time. Touching anything cold now give me a jolt and today a block of cheese really bit me! It’s embarrassing when shopping and a cheese and onion pasty bites you!
Anyway, to catch up with yesterday which was pretty much the same as Thursday. Sat on my backside without the will, effort, or drive to get up too much. I have a weekly group on Thursdays, and I got through the entire evening but sleeping and me are not particularly good friends now. The last few nights I’ve hit the pillow at 3am which was the same Thursday night. Friday was spent on the sofa really achieving extraordinarily little we had a quote for some work to be done around the house which inspired me to do some stuff which never happened as getting off my arse was just too difficult to do. The wrist where the infusion goes in is prickly still and painful at time it just isn’t pleasant at the moment. It just isn’t nice and doesn’t feel normal. I could be just feeling sorry for myself I guess which is another symptom (bizarre but that is what I am told). Anyway, after the fun and games of the evening I had another 3am crawl to bed to struggle with sleep.
Friday was the same as today, but I had organised a quiz night which went through online again and everyone seemed to enjoy it which is the main thing but the build up to it was again another intense day of doing nothing and missing phone calls. It feels like life and this year is passing me by. What can we do? I don’t really know. Again, another evening finishing with heading to bed at 3am but not feeling tired when going and there was struggled to get to get to sleep.
I awake with an alarm to be prompted to take my meds at 8am to and then gave up trying to get back to sleep so headed downstairs to hear the beginning of the party. Everyone was up before 10 which was unusual for a Saturday but nothing wrong with that. I then started playing on the PS4 and the next thing I knew it was gone 4pm and again I hadn’t moved or been up to anything. Just a tick off another day closer to the end of the chemo. I decided I had to do something, so I grab my mobile phone and the dog and go for a walk. A “Usual” walk which is around 3 miles and I was puffing like ‘Billy’ on Hayling Island, but I managed to keep the pace up and the dog appreciated going outside the house as the rain has kept her in for a few days. We had a good walk and I felt better for it (although shattered), so I thought let’s press the advantage and head to supermarket for something. I wasn’t sure what, but I wanted to stay ‘out’. That was possibly the mistake I was bitten (with the cold intense shock) by cheese and then the cheese and onion pasties I mentioned before. With a mask and a hat (your head gets cold as well) I spent half the shop leaning on walls and shelves trying to get my breath back. Shaking the wrist and picking things up with sleeves of my fleece as everything was cold and my wrist was killing. I survived and returned home to type this whilst watching the football on the tv. OK I got a bit bored with that and now I am listening to Rammstein on YouTube whilst typing this with the same wrists (Yes, I know!!) but I must share this somehow, don’t I? Apologies if you have been trying to reach me on my mobile it appears to be working fine but I am not paying it much attention so sorry, but I’ll get back to you eventually. As for me right at this second, I feel shattered! I just don’t know what to do for the best but I nothing feels like a great idea now. Everything else can wait I’ll back to it eventually. That’s enough rubbish from me for today.
My brain may not be working that well I just hope this makes some sense as it feels like I have typed the same paragraph repeatedly. Sorry but I am not going to read it and modify it now. You will have to decipher it yourself… I am too tired and cannot be asked.
Thursday 20th May 2021
It’s Thursday and I haven’t updated since Saturday, which is a big gap for me, so I’ll get to the big question first - I have been ok and feeling fine. Tired and cannot be bothered with anything but I didn’t feel too bad. New development this week is the fingernails tearing on the edges and the fleshy triangular bits that creep up between your teeth have been pealing back when eating something hard. That’s been going on this week, the gums haven’t hurt but it is a weird sensation to say the least. I will break the days down below to give you a full update as today and yesterday was not too good, but I will get there, all in good time. I would say I have been down and very fed up and over tired and not really sleeping well. Just not happy with life currently and everything is catching up and overtaking which makes me worried. The mini update is here for what I remember.
Sunday 16th May –
Can’t remember that far back I had a lot of time with Sean in the afternoon after a morning of trying to organise benefits and discounts for not working with time running out to claim. It was nice to have fun time with Sean and not be a logger heads and arguing we just simply got on with playing games and having a laugh enjoying each-others company.
Monday 17th May –
A moaning at the NHS day kicked off with a Blood Test from the GP surgery. The saga there was that the last blood test from within the same clinic as the chemo resulted in a 2 hour wait in the corridor followed by being told off for being there without an appointment. I was taken there (walked there by the Oncology nurse in the Oncology appointment) by a nurse who went in before me and asked if this would be ok before leaving me to get the test done. I was told not to be there as I didn’t have an appointment, the nurse didn’t know which colour tube to use and asked me. Yes, it was my first time so no I didn’t know. I was told never do it again and sent off home with a flea in me ear. That after 3 hours of total wait whilst in that building, I was quite relieved to discover that it was all my own fault. So, after that visit I phone the GP surgery and say I wasn’t happy there, but I need to book a blood test, they send me to RBH, Frimley or best option would be Heatherwood Hospital. Despite being three weeks away I was too late to book a blood test before the Oncology Appointment. I go back to the GP surgery and they book me up for this Monday but then say it doesn’t give us much time to get the results over to the Oncology team. I go for the appointment and yes, I admit I was told on the phone sent and email and a text message. I leave in plenty of time as it wasn’t my usual branch of the medical group and I had to drive to the other side of town. In leaving and getting there I cut 10 minutes off my appointment and arrive 15 minutes before then. I walk to the door and buzz, speak into intercom, and say who I am and why I am there.
“Your appointment is at 9.40 (NOT 9.30!) and you are very early can you wait in your car until nearer the time.”
“Yep, no problem. (I am used to waiting recently!)”
I sit in the car until 9.35am and walk back into the entrance box.
“Hello, Peter Slade back for my blood test is it close enough to the appointment now?”
“Yes, Mr Slade, Come in but have you got or had any Covid-19 symptoms?” “Yes, Many but that’s more to do with Chemo rather than Covid-19!”
“Oh! OK please come in,”
I go in and the nurse is genuinely nice and friendly and then says you are here for a blood test!
“Yes [Thank F*** for that] Here’s the form!
“Form?”
“Yes!”
“Oh, that is different from what I have here on the booking screen on the computer”.
“I need the results for a chemotherapy appointment on Wednesday.”
“You should have gone to the clinic,”
“I tried the other place, and they were busy until after my appointment,”
“I can do the bloods, but I cannot promise anything beyond this. As they are different authorities so once we send them, we have no control of how they get there.”
“It is going that way and they said it will be in time as they set this appointment date and they have never had any issues before.” “Saying that I have never had one come back to me saying it didn’t get there in time. What I am saying is one it leaves us we have no tracking and its done!”
“well, I am not feeling the NHS at the moment, two nights in A&E one of which they forgot I was there, and I was left in a cubical for 2 and half hours. Let alone being sat in a corridor waiting for a blood test at that clinic. Then I get to go and get pumped full of drugs to make me feel tired and sick and generally crappy for a month. Do I care if the bloods get there in time? Well, I don’t mind either way. But thanks for your honesty!” I then apologise and she accepted it and said sometimes we all need must vent and let it all out sometimes. Well, I just did and now I can move on. We left on amical terms and set up the rest of the week.
Monday afternoon I was playing games online via a zoom call which was nice going through a particular web-based game that was played with friends and family. Followed by the same later where using the same site we played some board games later into the evening. Things felt good.
Tuesday 18th May 2021
* WARNING *
NO CHEMO OR CANCER TALK IN THIS SECTION OF THE UPDATE
(you can skip to Wednesday for that!)
This was an incredibly special day but for a completely different reason. For those non-footballing people out there reading this you may not fully appreciate the story I will try and summarise for you. But 30 years ago, a Premier League Football Team was moved out its home and went to rent another league teams ground for 10 years. Towards the end of that 10-year term the team was sold to new owners that didn’t understand that Football is a community thing that brings people together. They moved the club 90 miles away and changed the name and turned its back on the community that had supported that team through thick and thin for over 100 years. The fans didn’t accept the “free” coach service offered (mainly because it didn’t materialise but that’s another story and there are many sub stories I could tell here). The community sat in a pub and said let’s start again, we came from nothing 100 years prior let’s do it again. There were trials on Wimbledon Common (home of the Wombles for those that want to know) and a team was formed. Granted senior status the journey of rejection started with being guaranteed a place in the Ryman League Division 2 consisting of 16 teams. When rejected at the last minute there we ended up beginning in the Combined Counties League. Starting just down the road from my home playing Sandhurst Town with hay bale stands and sandwiches made and sold prior to kick off. 2250 people filled the ground and our journey had truly began. 9 years later this ‘pub team’ had reached the football league. Tier 4 of the nations structure. We played at Wembley in a Play-Off final a few years after that and we had a season in a division above the mob that left us behind and sodded off down the road. (well, lots of roads and two motorways by that’s being ultra-precise). Now the one part of that journey that I omitted was the ground was not our old one but one we rented and then purchased in Kingston some mile and a half down the road from Merton Borough. We were nearly there but we were not quite. With the support of the council the plot next door to the old ground and on the same street was maybe coming available. We bid and saw many rejections which I won’t go into now. Ultimately, we got there and then didn’t have the funds to build the ground that we wanted. We asked the fans who raised £5,000,000 in a matter of weeks. Which again is amazing and the ground although temporary in places could go ahead. We could start there for this season (just finishing now) further delays meant higher prices and it wasn’t ready for the start of the season, but on the 3rd of November 2020 Wimbledon played its first game back in Wimbledon. The ground still needed test events and health and safety regulations passed before the fans could attend but to be honest Covid put pay to any of that business. Until Tuesday 18th May 2021 when the first test even was held at the new ‘Home’ and I got to go. I was a test subject to sit in the main stand and see ‘Our’ stadium for the first time. This is something that sat in a hospital room on the 18th of December to be told I had Cancer and Covid would delay any operation I honestly thought I would never get to see. I had volunteered and worked there for free over the time and I would do so again, but at that point it was the one thing I wanted to do. Thanks to covid I was not allowed to visit there, and this would be my first chance. Smack bang in the middle of Chemo. I thought I would miss out and speaking to the Oncology Nurse doing the chemo infusion for the first time I breached the subject and asked. Her exact word of reply will stick with me for ever. I asked that seeing as it will be the week between the meds would I be ok being kind of outside with 2000 other test subjects in a stadium. Not knowing how I was going to get there, and I will try and be as safe as possible is there any chance that I could attend whatever game it would be? Her reply was...
“You have to go!” followed by a question “You can’t miss that, I bet you have waited ages?”
“For me about 20 years of fighting red tape and delays, to then get that diagnosis I thought it would never happen!”
“It will be good to go, it would be positive and uplifting, you have to go!”
And Tuesday night that is where I was, what surprised me was how quiet I was and subdued. I honestly thought I’d cry, and it never really got close. It was a surreal moment and one that took a journey home and sitting at my computer the following morning to sink in. Then the emotion caught up. Waiting to get ready to go into chemo the reality of what so many people had given up their time and efforts to make happen. So many authorities told us it wasn’t worth it, and it would never happen repeatedly. Well, this was the first of three test events and I was humbled and privileged to go. It meant the world to me and years of sacrifice and effort was there to see I will see if I can upload a photo to prove I was there. This day will live long in the memory and sees a closure to so many of the fights we have had to have. We can hopefully now concentrate on the football and just enjoy being there. We loved the fact we just had a team, now we love the fact we have our team playing in our stadium. Owned and run by the fans in it purest form. Oh, the game we lost 3-1 but just like losing every pre-season game before our first season… no one (especially me) didn’t care we had a team. Now we have a home. FANTASTIC!!
Wednesday 19th May
If you skipped the yesterday’s update this is the real reason why you are here. Wednesday we kicked off Cycle number 2 of chemo. In the morning I reflected on the wonderful day before and then took my usual meds before deciding to walk to the clinic. I got there hot and bothered but early enough to sort myself out before the meds started. After about an hour or so of the actual chemo meds the pain kicked in. My right arm from the wrist moving up towards the elbow. The right hand was prickly whilst the left hand was tingling. Cold drink effects the throat which is just horrible as I have hiccups. I also feel extremely sick and then there is the acid reflux which kept me up until 4am this morning. Everything has kicked off early this time with the nausea is really in full affect. I had pain throughout the end of the therapy and then into the evening when the nausea and more so acid reflux was in full effect, I came back out of it around 9pm where I started to begin to come back to the surface. I gave up and took Gaviscon at 3am this morning and finally got to bed at 4am.
Thursday 20th May
I was awake by 9am to take meds on time and then typed this had a visitor and felt sick for the entire day. Which hasn’t stopped yet. The medication has stayed down as I haven’t been sick, but the acid reflux is doing me in. I feel tired and drained but that could well be the lack of sleep. I have typed this up and I won’t be out walking today. Would have liked to but I am not up to much today. I will see how we go from there. No walking today at all, but I did join the games night which I didn’t think was going to happen but the added the tablet for sickness appears to be doing the job. Nothings coming out yet but the acid feeling in my chest is not going anywhere soon. Its currently coming up to 1am so I am going to call it a night tomorrow and see what tomorrow brings and hopefully a good nights sleep.
Saturday 15th May 2021
It’s Saturday and I haven’t done an update for a few days now this maybe due to being tired and generally feeling a bit dejected and grumpy. I think I’ve had enough of feeling tired and useless and whenever I try otherwise things go the opposite way than planned. I am snappy with everyone and I am tired this doesn’t mean that I sleep at night it just means I see each morning more tired than the night before.
Since my last update I have had an appointment with the Oncology registrar and this afternoon I completed the course of antibiotics. I am now medication free for under a week before going back for another infusion at the clinic and then cycle 2 begins and I go back through the process of everything tasting horrid and trying to hide from the world, so I don’t get another infection. That is three by my rough counting. The meeting back with the oncologist went very quickly and was short and to the point. Looked for the infection and couldn’t see any so assumed the antibiotics were working and suggested completing the course. I asked about the remaining tablets I have for Chemo and he said not to worry about them just finish the antibiotics and enjoy the meds break. Then it’ll be back to needles, infusions, and tablets for another month. If I am completely honest and I am fully aware that I may have gotten off lightly compared to others, but I am not looking forward to the horrible taste of everything bar spicy or high sugar stuffs and the feeling like poop, oh yeah and the poop! I am not going to miss those feelings. I am trying to think this as being a quarter of the way through and within three weeks I will be halfway done and counting down as opposed to counting up. That optimistic side of me is very well hidden now and I am not very nice to be around at the moment. Just to let you know!
The Forgotten Man - Wednesday 12th May 2021
I will be starting this from yesterday, as therefore we are updating in a correct order. So yesterday was ticking along nicely forgetting the meds and but feeling ok. I had a meeting with a support group and was half-way through the zoom chat and a routine check of the temp and it was 37.2C. Thought that was getting high and wanted to check so bang on 8pm I checked again, and it was 37.6C. For an hour it remained above 37.5C and above so I hide from the screen and mute the mike to phone the out of hours nurse. Back to A&E I go! Yeah well at least it isn’t Friday night at 11pm, so this time should be a breeze, right? RIGHT!
9:30am – I drive and arrive at 9.30pm, walking into A&E again and explain the situation and get to see almost instantly by triage and then go a bit funny when the needle goes in. So, I am dosed up with biscuits. By then I believe my temperature was returning to normal (I had taken paracetamol) which may have helped/hidden the issue. Well, this nurse was genuinely nice and was trying to be very friendly. At one point whilst I was sat waiting, she heard an old chap desperate to be seen asked about how long. She offered him a coffee and he was made up. He was so excited that when they called my name he said yes and stood up. This must have been around midnight.
Midnight (Approx.) – I am with a nice and friendly doctor who performs a full check and gives me the results of the earlier ECG things are ok with the ticker and being out of breath when walking recently. With that in mind, he heads off to call the consultant and then report back to me. Sorry but I’ve come along to A&E without my antibiotics which should be due in half an hour. Can you organise those or am I going home soon, and I’ll just take them late?
1.00am (Approx.) – He returns and has spoken to consultant who has suggested speaking with the oncology team of Surrey (I’m under Berkshire) who has then agreed with his plan of action. X-Ray to ensure nothing odd in the chest and urine sample to ensure nothing strange there either. These would then tick off the main places for infection and allow me to go home with the lower temperature. “Here take a sample pot!” and then leads me around to the ladies toilet as the men’s out of order. I provide a sample and head back to the cubical.
1.30am – Nurse arrives and asks if I have any water. I say yes and offer her my sample she says no the drinking variety and hands me my tablet antibiotic. Another nurse arrives and takes my observations with a temperature of 36.6C. I ask why there is only 2 of the usual 3 tablets and she says she was told it was only two but will check for me. I eventually take the meds with a bottle of water hidden within my backpack.
2.00am – Nurse and doctor have a conversation outside the cubical. Primarily that both are going home now, and would she do the urine dip test on my tube before she goes. She then pokes her head in the door and asks if I’ve had my x-ray yet.
2.05am – called for x-ray. A porter arrives and asks if I can walk, I say yes and then struggle to keep up with him till I get to the x-ray department. I am asked my name by a random person and I answer honestly. He says good and leads me into a room. I have my chest x-ray done and then asked if I know the way back to the ward. “Nope, but I will find it!”
2.20am – Same nurse pokes her head in “Have you had your x-ray?”
“Yes, I have!”
“Good!” goes home.
3.00am- Start to get concern that the nurse hasn’t returned. There is a computer terminal outside the cubical and someone will have to return there soon. I was walking around so not been given a call nurse button. I sit on the bed.
3.40am – Stuff this I am going to go to sleep I am shattered and the bing’s and peeps and bleeps mean I spend (approx.) 20 minutes lying awake with my eyes closed on the typical A&E bed.
4.32am – Believe the zombie apocalypse has finally happened as no-one has returned to the previously mentioned station. I see a paramedic who grabs some bedding and disappears quickly.
4.45am – I can hear patients there is life beyond this cubical.
5.20am – The original triage nurse walks past the cubical sees me stops and says why are you still here? Waiting on x-ray results and urine sample I say. Hang on and she goes back to the desk a few minutes later she arrives back with a doctor.
5.30am - The doctor walks in ‘Good News!’ he says everything is clear you can go home. She removes the canula and I walk out for the second time in a week to the sunlight of the early dawn. With a vow that if recommended to go to A&E I will not be going back again. I will sleep on it and phone the oncology team in the morning as I have lost two nights sleep since Friday and could be the reason, I’ve been Discharged and heading to the car park
The side effect diarrhoea which is quite common with this antibiotic may be kicking in as well. Stopped tracking everything as I have spent the morning and early afternoon in bed failing to catch up with sleep. Knackered and I have an oncology appointment tomorrow afternoon.
Monday 10th May 2021
I am sorry for all the excitement of Friday Night/Saturday morning and then nothing effectively over the weekend. I am scalded chastised and apologetic. I am on new antibiotics which (Guess What?) are cancelled out by the chemotherapy medication. Which basically means further to a conversation with a nurse on Saturday afternoon the chemo treatment stopped. Which instantly mean two things which was the proverbial two-sided coin. First the oil slicked taste and texture of all food and drink seem to stop pretty quickly taste was back! The flip side of the antibiotics is that I have a foul dry mouth constantly. Despite the best efforts of Tesco’s own double strength squash. Coffee taste ok but makes that constant taste in my mouth worse than ever. It has meant I have attempted a glass a milk which was less 5cm deep at the bottom of a ridiculously small glass and it tasted fantastic! OK it caused the throat reaction of spasm (which is not pleasant when fiercer) feels like your throat is closing and you can’t breathe.
--- Great! --- Not! ---
It was worth it this time. I might try an ice-cream later just to see if I can breathe afterwards. Which boy turns down the opportunity to experiment on anything? Including himself. It’ll be a laugh. Put it on YouTube? Live stream…
Moving on, I have felt very tired for the past three days and today is no exception although I have caught up with me sleep somewhat. I got three hours into Saturday and a good 8 to 10 hours into Sunday. Stupid thing is Sunday I had to sit up to get the medication done, as soon as it was done, I felt more awake than the entire weekend! Seriously body what was that about? Took me another hour to settle and it was again into the early hours of this morning before I was asleep. I was awake at 6 to take meds again before getting back to sleep again. Which was nice. Today however I have been busy doing nothing. I have sat and played games and put a request in for tax support seeing as I didn’t get the job, I applied for but assume that was cancer related and I did not nail the interview which was all down to me. Oh well. We notch it to experience and move on.
I’ve decided to add a feature answer the most popular question I get asked which is - How am I doing?
I will add this feature to all future updates until the end of today where I will resort back to what I remember I would do.
How am I doing?
I think I am doing ok, yes; I am tired yes, I have been confirmed with an infection cellulitis I think that’s what they called it which has changed the side effects I am experiencing from everything tasting horrid to having a permanent horrible taste in my mouth. It just won’t go. Tooth brushing and the medical mouthwash has no effect. Makes it feel dry as well. I wasn’t that far away from being through the chemo and free for a week and now I’m not. The pecker is up but may not be as skyward as it was a week or two ago, but I feel ok. Trying to find things to be positive and there are few things on the horizon I will be allowed to do and one thing which will be so exciting to do I may just get myself a little too excited about (more on this on another post I feel!). Sorry I digress. I have always had pain in a weird way in that it normally comes in waves. I can be fine and then pow it just hits me, and I scream. Then it’ll go back to normal it has ranged from Friday 2 to 8 out of 10. Saturday during the day it peaked at 7 and only 6 on Sunday. Today it has not passed 5 so mostly good day, but I haven’t attempted to do anything. I think a dog walk and a shopping trip maybe required. More later in the weak!
Saturday 7th May 2021
I shall begin this update with the immortal words of 'Don't Panic' and then follow it with these words - I'm writing this from A&E. Why is already crossing your lips well it’s because I've had some pain in the beast (belly to most other people). That started yesterday and continued today, I've kept an eye on my temperature and to be honest it's been all over the shop and at one point it got to 37.3C. The pain has gone from around a 2 out of 10 up to a 7 out of 10. It peaked at 8 on the drive in here (the hospital). Whilst here, it's been about a 5 or 6, the needle to take blood and leave a cannula in hurt like a Mother Hubbard! It is terribly busy in here and when I asked if I had time to go back to the car and collect my phone, I was told the wait time is 4 hours so it could be gone 4am before I get to see a doctor tonight (It is currently midnight). According to my very rough count I guess there are 4/5 before me, but they have taken bloods and they'll need to be analysed before a decision would be made. The good news is I remembered to bring a book with me, so I will stop draining phone battery and start reading (that's a 6!!) the book instead. Sorry for the interruption brackets but the pain comes in waves so I'm scoring it as it comes up and mid-sentence that scored a six! I'm downing the phone now and digging out the book! More update when I can.
It's now 2.30am and I'm still sat waiting in A&E. I assume the bloods that were taken have had the results back by now and it’s just a case of clearing through all the other patients to get me a bed to lay on. I hope that there is a doctor to see at some point soon. There’s been some drunks who have come through and been seen ahead of me, but I assume they were in worst states than me. As I think at least one of them had taken more than just alcohol but who am I to judge as I don’t know the details where the queue deciders do have that knowledge. I am not moaning but I do feel for the staff who must put up with someone arguing which is their current mobile number the one they just gave or the new one they are just giving. Let alone the chap who got bored waiting for 111 to call him back and went to A&E and was just behind me in the queue. I am feeling a bit tired now.
Oh, the chap that was behind me has just had his 111 call back in the waiting room. Having exchanged a few sentences, he seems nice enough and he has a tetanus thing. Affecting his glans.
*Its 4am* I have been called through and I have been seen by a doctor and there are currently three options depending on the consultant meeting he is just about to have. Firstly, I have an infection so now it depends on what they think it might be. The results of that decision will mean one of three options.
Option 1 - I'm staying here, to be put on a drip through the canula. These will be some serious antibiotics that will be infused into me.
Option 2 – Meds required are not quite so severe and they can hand me tablets and then get sent home. Or
Option 3 – The infection sounds like it’s a real nasty one and that particular one requires surgery to remove it. It sits deep in the layer of skin and forms like blisters and black pits (which haven’t happened yet). These will have to be cut out to allow the skin to heal itself. I will be back with an update when I know but it sounds like Option 1 is the most likely based on the conversation but that is not the preferred option for me, but we'll have to wait and see!!
Side note - the staff in A&E put up with some crap from people and keep smiling. I try to stay calm and let them do their jobs. Which I hope is appreciated.
4.25am Update – it that the options have been narrowed, as option number 1 is not an option anymore. The Doc is calling some surgeons up to come look at the infection for them to decide on the operation or not. Meaning its now down to 2 or 3...
5am – And it's option 2, *phew! * I am going home after the wait for the antibiotics to take with me. Once they are here, I can go home!!
6am – I am home with a coffee and a headache so I will forget the drink and head for bed!! If I wake before bedtime, I’ll try another update later.
Thursday 6th May 2021
Well yesterday turned out to be remarkably like the day before with lots of plans and extraordinarily little execution. I got up with a plan of finishing off the lawnmower taking the dog for a long walk and organising all the other jobs such as phoning about tax and benefits and MacMillan support. Well, I had some breakfast and took the meds and felt a bit lightheaded so thought I would lay on the sofa and watch tv for a bit. The dog woke me two hours later where I managed to turn over probably for a cuddle with the dog, but she was off and running quickly. The next thing I knew it was gone 2pm and it was time to prepare for the kids to come home. We managed to get one of the phone calls done and I picked up some bits from the shop and then spent the evening playing games but feeling simply weird. My best guess of the feeling would be tiredness, which I simply couldn’t shake off. I had fun in the evening playing games but all in all a frustratingly poor achievement day.
Onto today and little has changed, I still feel tired, and I just feel a bit flat. The taste of the meds has reached a point where I think I’ve just had enough of it and to think I have another three months’ worth to go through. This is where it may become a grind, it’s the thinking – oh that’ll be nice but then not being able to do anything about it. I am trying to think of an example, the best one is a bowl of cereal. The milk is simply too cold to enjoy it, so you end up not bothering and then you just end up eating the same stuff over and over. Mainly because you can actually taste it and the other stuff just doesn’t taste nice. That’s where I am today, feeling a bit sorry for myself. I have no good reason but was a bit emotional this morning for no good reason just listening to old songs and thinking that I make get the opportunity to go and see these bands. It made the realisation of what could have been the result of all this business compared to me moaning about the taste of things seems a little improper.
What about the rest of the day, I can’t see me joining the walking group today maybe in a weeks’ time when the meds are done and I am free for a while, I do want to take the dog out today as I’ve promised her for day after day without appeasing her and its about time to honour my debts.
Tuesday 3rd May 2021
Plan old not done anything day today. I have half repaired, half failed to repair the lawnmower which done me in, and I had to sit down and chill out. I was absolutely done in after trying to push a washer on a wheel that I had to take the cap off first of. So, the remainder of the day was spent lounging in the chair and doing extraordinarily little. I did drop my son off to go shopping but that was about all I could manage. I real nothing sorts of day.
Sunday 2nd May 2021 -
This update could literally be two words…
Strange Day!
Bosh done!
I assume that won’t be enough for certain members of the family but there you go. I have done truly little at all today sorted my food out and drunk too many cups of coffee and then played on various games. I will add that I had a good day with my son playing together so I have really enjoyed today. Days like this without argument or incident happen every so often so when they do, they are ones to saviour. Back over to the medical side of things. The reaction to cold is now getting on my nerves beyond the sudden pain (honestly its not that bad once you get used to it). The loss of taste is more of the issue as my taste is quite spicy and flavourful before and now that is fading, I am struggling to find something that I enjoy. Things I normally would, are simply horrid. For those that have taken laxatives before they have a slick oily texture, that is left in your throat and feeling of an oil slick slopping around in your stomach. I have that feeling constantly currently, although not painful or bad it is just not a nice feeling. And it is not going away! I would always drink squash (orange) but now that sweet citrus taste is now oily, and the texture is slick without flavour. Honestly (and you may not believe me) but it tastes slick like Castrol GTX and I am honestly avoiding it. Even when taking my tablets, I am going for a coffee instead. Not that I can taste that but at least its warm and not fowl on my tastebuds. Even water doesn’t feel like water, its slick and oily and doesn’t taste like water. Which is simply weird. My stomach has been weird, but nothing has crossed the line in terms of asking for help from the NHS. Everything is manageable in terms of feeling sick but not ever feeling like I am going to. I can feel like this eat and still feel the same afterwards. I want to drink but don’t want water or squash so yesterday I went and brought a Pepsi Max which was flavourless and too cold to enjoy. I guess I am feeling a bit sorry for myself today but having said that I have had a good day and enjoyed myself, I just don’t feel myself. I feel this update is the same sentence on a circle that goes around and around and doesn’t get anywhere which I think sums up todays feeling. I am ok but I don’t know how, why, who or when. Let’s hope a decent night’s sleep (I haven’t had that for three nights now) will help with that. Head spinning and I think I shall stop this twaddle and go write a gig review instead see if that is any better, if I fail that I will be back to either games or bed...
See you tomorrow!
Saturday 1st May 2021 -
The day has just started and one of the side effects I was warned about has just kicked in which I hadn’t reared its head before. Oh boy did it hurt and what may have made it worse was that I thought it was fine and kept going whilst it was getting worse. I was warned that I would feel the cold more than ever and touching cold things would hurt. Well, that was all rubbish right, except for cold drink on the inside of my throat. Well, I WAS WRONG!! I took some crabsticks out of the fridge opened them and as I was peeling off the thin plastic sleeve wrapped around individual sticks. It was a bit of oh that felt a bit cold, then it felt like when your fingers stick to a plastic bottle of water and you can’t let go. I had that with seafood sticks!! Then the pain goes up your arm and it wasn’t a shot that I was expected it was a slow creepy and it got increasing worse slowly moving up my arm. I think its time to microwave the heat pack. I will back to this soon. See that wasn’t long at all was it?
I have plans for today where it will be a daddy/son day but the way I feel right now that may have to have certain parts that take a rain check, but we will have to wait and see on that one. It was going to be another big football day as well as my team could confirm safety from relegation today, but they are up against a particularly good team at the right end of the table. Meaning I will be a little on edge today anyway. I can watch the game live so will be doing that with me boy in a bit, but feet are cold so need shoes now [jeeze its bad today!]. With regards the game I will have everything crossed again including fingers, toes and possibly eyes... I will try and update again a bit later today (hopefully). Right now I think its time for a cup of coffee, Rammstein in my ears and City Skylines on the laptop games selection!!
It’s a little update from the end of the day, I have been out again and been in a shop. Watching the boy playing football and popping off to stack up on quick food to keep me going through the next days. To avoid having large meals I am planning on smaller but more often which I hope will keep me going. Blood sugars has returned to normal levels and then just a few moments ago it was back to a raised level but that is where it’s been for me for some time, so I am ok with that (not happy but ok). I’ve kept an eye on the temperature as I felt cold today and was out when there were a few spots of rain and I’ve been out and about a few times in the last few days and the temp is well within the boundary lines, so I am happy with that. Medication is going ok not too much nausea and no worries on the diarrhoea front either. I will add that this is all – so far. As mentioned, before I will have to keep an eye on this but that will be the case for this and the next three cycles but so far so good.
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