A&E - Living With... [Part 5 - June 2021]

Well its June and this year is bowling along at a pace and I feel like I am not keeping up the pace. It feels like this year is just a holding pattern for me. I will give you my views and updates for June, but rather than daily the updates are appearing as and when so please be patient. I will begin with the Chemotherapy Cycle plan and follow it with my targets that started around April time. Thanks for joining me on the journey and I hope you enjoy!

Chemotherapy Cycle I am following -

Before I begin, I am not going to give you the names of the meds I am taking as they are long names that I know what are for and should be doing.

• Day one is the sledgehammer to get things going. An infusion of clearing fluids to ensure its clean and clear. This is followed by glucose mixed with boosting steroids which help the body cope with the actual chemotherapy medication. All the while I am being monitored and tracking of the bodies vitals to ensure nothing to worry about.

• After day one with have a further fortnight of tablets of chemotherapy medication which are a handful. Four large tablets in the morning and again in the evening. For the first few days of these I will be taking further steroids, glucose, and nausea medication to ensure the body is able to keep going with the main meds. From there I have a week’s medication holiday before this cycle begins again.

All the time this is going on I will be keeping an eye on the side effects as these could lead to major issues. There are instructions for any of these kick-off but to list them below.

• Diarrhoea

• Nausea

• Vomiting

• Mouth Ulcers

• Hand-Foot Syndrome

• Fever or Infections

• Chest Pains

• Sensitive to temperature

• Hair thinning

• High risk of infection

Somethings are obvious to deal with like chest pain may mean a heart attack so get your butt to A&E the others have different things, but I won't list them here to bore you anymore. I promised to clarify, and I hope that has done the job.

TARGETS

LATEST UPDATE

Thursday 1st July 2021

This will be the last update for this page on the blog. Today will/should be the last of the infusion chemotherapy. This is due in less than 2 hours-time and will be followed by the final period of tablet medication where I will be home and looking to get through it as best as possible. The second cycle was the only one where I didn’t end up in A&E. Lets hope the final one will be a good one (well the best one possible), as it is never going to be fun but you just hope for the best and staying healthy being the main thing. Well, the countdown is on and soon my attention will change to the future rather than the here and now. This will be a short update obviously and aim to start a new page number 5 should be started soon as we move into July. Many thanks again for all your support not just for this page but the other pages as well. I appreciate your love from all parts and that has continued throughout this year whilst everyone is having their own issues so thank you again.

Tuesday 29th June 2021

Sorry it’s been a few days before this updates and I have had some items to updates as well. Sunday was daddy-boy day so that went off ok we had some fun and took the dog for a long walk. I went out! Monday was a busy day; we had booked the dump to clear out of the garden junk which had piled up and needed to be shifted. I was here and sorted out all morning ready for the timed visit to the recycling centre. I was so busy that I completely forgot that I had a telephone appointment with the GP. Following the low potassium levels from the previous blood tests. Well, I completely forgot it was happening. I got back from the dump many hours later and see a missed call on my phone and a message from the GP. Whoops! Sheepishly I pick up the message and the Doctor says the first partially low potassium levels had returned to normal which suggested that the previous readings were potentially incorrect. This could be a lab error, but things seem normal, so we do not need to do any more. Effectively we will draw a line under it and simply move on and ignore the one-off result. Done.

From there and before getting home from the dump. I was covered in mud and was probably very stinky with it. As I was leaving, I saw the PICC line cover, and it looked pretty close to the ‘in’ point. Which they said to worry about. The first cover was peeling back, and I thought I’d cover it with a second one. This time I put a micropore tape sticking the edges down. Which has gone directly onto my skin, but I could see the under cover peeling almost to the point of concern. Which led me to text the nurse at the PICC centre. They called me and said that I don’t need to come in as I will be there on Wednesday. I go home and then get up to speed with the GP and the blood situation. I was invited out for the day but was unable so suggested moving it too tomorrow.

Today I get up nice and early and get message that we are delaying the meeting. Meaning I take more time to chill and then take a wonder over to the bench next to a beautiful park where we sat and chewed over the worlds problems and even have a laugh. I headed to one shop, and he headed to another. I brought too much to carry and then struggled to get back home. Once there I worked on the other page of this blog and then watched the football with me boy who was suitably pleased at full time. I was pleased at full time as well as the next England game would be on the BBC as well. Off topic for this blog but I hate the ITV coverage of this Euro Tournament.

The remainder of this week we return to Chemotherapy, starting tomorrow with a PICC clean up and bloods taken. Which should be my last visit there (potentially). Followed by the chemo infusion on Thursday which will hopefully be the last time if all goes well. I will keep my fingers crossed that I remember to drink enough and not get dehydrated. I am hoping that mentally I am used to it now and can just get through the next 2 weeks of medication without any panics or other things and just get this done and dusted with a good result. Well, this all begins tomorrow with the bloods and PICC. Need to pack my bag to ensure nothing is forgotten.

It’s been a long LONG time since I have thanked everyone for their support and even those not close to home have been sending me special vibes which is fantastic. I will also single one out who is 3,536 miles away and its their Birthday today and I have been bad and forgotten to send a card or organise a present this year. My wife and kids have felt that as well this year, but I always make a point of saying something and this is my way of saying HAPPY BIRTHDAY and I am thinking of you today and hope you are having a fantastic day and not worrying about me and my health for a day. Giving the dog and cat a hug from me and having a great day… You know who you are. I will and already have “drink to your leg!” and hope to see you soon chief.

“There’s too many captains on this island. Ten thousand dollars for me, by myself. For that, you get the head, the tail, the whole damned thing.”

Saturday 26th June 2021

A day late but I feel yesterday’s update was such a good day after a few weeks of pants it felt respectful to give it a full update. Despite my belated email about shielding, I headed to visit a friends who I really haven’t seen since the lockdowns begun. Their son didn’t recognise me and was terrified of the Jaws shirt I was wearing but it was a truly stupid thing to wear! After some convincing we managed to have a chat and he refused point blank to give me his rainbow welly boots. Too small for me he claims but this was never proven in a court of law or allowed me to try them either. Being a 4-year-old with a killer smile means he probably gets away with more than me trying to steal welly boots off a child. We spent the day sat down doing little more than chatting and I didn’t shut up. I can see why I only get invited places for a limited amount of time. I realised on the drive home – boy you never shut up dribbling on about nothing all day long! They smiled and nodded convincing me they were paying attention, so I continued. I talked through the football, then a meal, then the coffees and anything else they tried to shut me up with! And I loved it. Just what I needed to see them all have a conversation with a youngster that was on my level. He did get called away to repair Mr Purple’s shop and Mr Green’s football as he wasn’t qualified to repair Mr Green’s expensive bike that was temptingly within grabbing range. I have promised to bring games with me next time. Once the rules are relaxed and we can handle meeples together. I don’t like to name names on here, but they know who they are, and I thank them and love them in equal measures. You can come and visit here, and I’ll take you for a wander to Swinley Forest where you can plan a mountain bike expedition for the following visit.

Today is Sunday and I have promised time with my son today and he has put in a schedule together and is currently upstairs getting dressed and putting the parts together for whatever lays in wait. I feel a dog walk, shop, computer games and video editing sessions await. I will now cut this short and get on with the day ahead.

Friday 25th June 2021

My apologies again as we are in for another quick update today. Main reason for that is that not too much has happened today but there was something from yesterday which made me laugh, but maybe should be serious. I think it is a little bit too late now. Should I go in reverse timeline order and go through today first. I was up crying at a documentary this morning (and I’d seen it before!) I headed out for chores with a couple of jobs for my son at either end of town. This done I headed to the shops to pick up drinks (when I say drinks, I mean just that – Orange Juice, Apple Juice, milk) and some olives. That done I posted some important things and then run into some friends and ended up boring them silly whilst talking about the movies I’ve been reviewing. They left me sat on the bench, so I headed back home.

At home I got some things sorted but generally not much doing. The poor dog needed a walk so I took her with me to walk to collect my son from the other end of town again so that was nice for me and her. Well on the way there I was just on the edge of a wooded section of the walk when ahead of me looked like a couple of young lads who seems a little too keen to be aware of my movements. I was slightly perturbed to see that they were heading into the woods ahead of me. I turn into the woods path and they have turned back towards me. I think this could be an attempted mugging here. They turn and head for rubbish bin on the side of the path and use the top to lean on. I continue past them and less than 20 yards pass them I see another gent walking towards me with a mobile in hand. He stops when he sees me. Turns around and walks away. Then turns back towards me again. I think these three are going to go for a mugging here. My brain flickers quickly then I guess they are looking to meet to exchange some items and cash and they don’t want me in the middle of it. Aha not a mugging but get the hell out as soon as possible. In the middle of the three of them my dog decides this is the best time to empty her bowels. Leaving, fumbling about trying to find bags in my pocket. They spill out everywhere. I then chase a few with the slight breeze. Fiddling like old style fruit and veg bags I single one out do the responsible dog owner thing and get out of the middle of ‘deal’ as soon as possible. I got to my son’s club just as my wife arrived so they didn’t get to meet the dog for long by we got the boy, and she was pleased to see him and vice versa. We have come home and rather than play games I have decided to update this, and potential watch a movie (Maybe even review).

Finally, yesterday. I received an email yesterday from the NHS suggestion that I should be shielding. I have been diagnosed with Cancer in December 2020. On 24th June I get an email warning me I should be shielding about Covid-19. I did laugh as I thought it may be a bit late now. I should be starting my final cycle of Chemotherapy within a week of that email. I did laugh but that could be more about my sense of humour than anything else. I will of course be continuing with the same precautions I have already. I have been going to shops and I won’t be stopping my kids from going to school to protect myself. I would go and live in the shed before stopping their freedom. Anyway, enough of this business I must away.

Thursday 24th June 2021

So, this will be a quick update as I have left it so late in the day to do an update. I have the group walk was today, but I could only go along for about half of it. As I had to dash away as I had an Oncology Appointment where I met the consultant for the first time as he had been unwell himself for the entire time, I was under the Oncology team. I spent more in the waiting room than in the office. He introduced himself and then spoke for about 5 minutes and then we were done. He said that he would normally suggest a PICC line straight away, but other registrars have their own ideas but each to their own. He said it was unusual for someone as young as me. I looked around the room to check he was talking to me at that point. He was! He said that it was unfortunate and the pain in the wrist may have been avoided if we went down the PICC route earlier, but I guess they were trying to avoid the weekly visits and stuff. Each time you do anything there is always a reason and you go with the information you have at the time. He then said there are some options once the Chemotherapy is over and said that after the infusion next week, I will have the medication as usual but that would be it. All finished. From then I am done. He then explained the option of staying ‘under the care’ of the Oncology Team or the original plan which was to move back ‘under the care’ of the surgical team. I said like all decision with this I am happy either way and he said we will go back to the original plan and hand your care back to the surgical team. He said the news was positive and he is hopeful of a full recovery and then it will be a five-year plan of testing and checking if I remain ‘Clear’ then I will be discharged and let free… I should stop the blog by then I guess.

He finished up by saying “in the nicest possible way, I hope we do not meet again!”

“and vice versa!” we exchanged a laugh and shook hands. That was it for the Oncology consultations.

One more Chemo and we are done.

Wednesday 23rd June 2021

I really cannot call these daily updates, can I? To sum up the last few days. On Monday we went to Ikea and looked at a few options for the bedroom to be done as we have never done our room since we moved in. Tuesday, I got all keyed up for a call from the job centres as I had an interview there. Where I was told that I am entitled to a short-term benefit but then matey says there are certain expectations that you must keep to. This build up with him reminding me what would happen if I did not comply with the requirements that he is about to lay out. By now I was about to wet myself with panic and then he hit me with the requirements. I must attend the appointments with the doctors, yep tick doing that already. Secondly follow the instructions of the doctors as well. OK I can do that here comes the big one… That should be enough thanks. Wow That was easier than I though.

Onto today and I was back at the local clinic today. Today was PICC Line check and clean up day. So, I go to the appointment and walk in early and there is someone else already in there. It needed doing as A&E had pulled it about and the cover had slowly pealed off over the days after with a bandage type thing that just falls off when you look at it. Apparently, the clear cover was close to then in point which would/could have been lots of issues, so we went back and cleaned up and redressed the PICC. We are all done and ready to go back again next week and get it cleaned and checked again but that week they will be taking blood ready for the chemo the following day. We are getting through it and its all about to end after the next cycle we should be all done then I assume we go back for more tests and checks to see how successful the chemo was. Then there will be a decision made on what will happen next. Until then we have the Euro’s and bad movies to watch.

The sensitive fingers and cold reactions have faded, and I was drinking cold cans of Pepsi and milk and even milkshakes. I was like a pig in Chardonnay showing off waving things around things from the fridge. Then I took a glass filled pudding out of the fridge and it bit me, I was not ready for this, and it got me more than usual. Which means I still must be a little careful the chemo tablets have not finished just yet, but we will get there.

OK that’s enough for today, the chemo is nearly done, and I should be enjoying a break from the meds ahead of the fourth cycle. That should be it then.

Sunday 20th June 2021

Finally had a good day yesterday. I got to visit my mum and chat about nothing, but I guessed she’d be worried about me so seeing is better than being told. She got to see me looking ok and being myself. It was nice day. Not much completed by me but we got there. Then we I had an evening in front of the TV with the dog which was nice. Onto today and a strange day all round. I have never guilty for being a father on father’s day before but today I do. Nothing mentioned when I got up in the first place. Daughter was out buying presents for other people whilst my son was buys playing on the PlayStation. Giving up I decide to take the dog out, but I am stopped to open the presents for fathers-day. Which was not a happy time, so I take the dog out and we route marched today. I have to say it felt good to be out again and we got through 7.3km together which made me feel so much more positive than I have for a while. Just to be able to get through it, with the rain and the mud and the puddles we still got through it and the dog has been out which was important as well. Dinner was left over from yesterday and when trying to lighten the mood at the time which equally fell flat among the kids so the feeling of being the reason why everyone is grumpy continued so decide to stay out of the way. Until my son decides that I should work on his videos while he continues to play his game. Being sent to work today just sums up how I am feeling now. I don’t wish to moan but there you go a good day followed by a strange one. We are done here let’s move onto the medical stuff. That is why you are here after.

The doctor said something in passing when leaving A&E the other day. Which suddenly turned on a lightbulb in my head. She said make sure I drink enough as I sound like I am dehydrated and drinking loads has made a difference. Thinking about it not liking the taste of anything meant I reduced myself to drinking tea and coffee and low and behold I was up all night due to the caffeine and worst still I was having heart palpitations which was scary, but these stopped as soon as I eased off the caffeine. Reducing the caffeine, I stopped drinking hardly anything. Meant it has made me feel down and non-plus-ed. I think that is the main thing that has affected how I feel. The lack or horrid taste of everything has stopped me eating certain things just the nice (and high sugar items) stuff which is not good for me anyway. The end results are not good but drinking lots has helped. I have completed a walk and feel fine afterwards. That was today, tomorrow is the beginning of varying projects kicking off and the start of many appointments that I will be going through this week. Let’s see what the week brings.

Friday 18th June 2021

To quote the lyrics of Elvis Presley – Have you ever had one of those days. Boy, Every had one of those days when nothing goes right from morning to night… etc etc. I woke and fell back to sleep. Emma was due to be out today, and I had a friend over to quote for some jobs, Well, that all went to pot when Em got up unwell and didn’t feel safe to drive. By the time I was up I am thinking of a ham and cheese toastie. No Ham! No problem I have a plan for this. A tin of Danish ham at the back of the cupboard for emergencies. Well, the metal key got stuck and I tried to open it myself. Well, I say open the tin it was more of a case of trying to remove the top of my finger. Turning the kitchen into something reminiscent of a crime scene from one of those TV shows. Blood covered the Ham, plates the sink and the floor, oh and the counter! I thought it was another A&E trip. We contact the 111 service who suggested that we could deal with this one at home. We decide that seeing as it is so deep, and we didn’t have plasters her that we head for the pharmacy to seek advice. Mentioning the chemo and all the other business, the fact I had a blood thinner just two days ago may have been a bigger issue. We got home late for the meeting.

Why were late? We go to the pharmacy and told to buy plasters and get antiseptic cleaning stuff. Off we go where we told to go (not shown) not finding any gauze we ask and get told they may not have any. Give up and head to another pharmacy they tell us straight away that they don’t think they have any, but they kindly check for me. Which wasn’t quick enough for the impatient woman who followed me in. Empty handed we headed home.

We get there late (for the meeting) but he waited (nice man!). So, we sort that business out and I think that I will now finally eat something now. Promptly drop a full glass jar of bacon and tomato cooking sauce. Smashing the glass into bits there was glass and orange sauce everywhere. If the blood hadn’t been cleaned up it would have mixed up into a bigger mess. It was at this point that I think I gave up. It was emotionally physically and painfully too much, I just had it. Done. I was done. Luckily, the misses were there to pick me up and get me going again. Covering the finger in sauce meant I had to get the tape off the finger and redress it. Tape comes off the blood flows still. This would be three hours after the tin attacked me. Or I attacked myself. I still haven’t got all the blood off my hands. The rest of the day was spent in front of the tv doing extraordinarily little. I missed a call from my mum, but this was the time I was mobile between matches in the European Championships, but I will speak to you soon. It’s just been one of those weeks, hasn’t it?

Thursday 17th June 2021

OK nice and early today just in case anyone was worried that a blood clot would have got me in the night. Well, I am OK and fine and looking at a day as follows:

✅ The plan today is that I survive the night

✅ Get dressed and ready

✅ Play on old Computer games until 11.30am (ish) [Working on it!]

✅ Get a lift to the hospital

✅ Get an ultrasound on my shoulder to prove its just tissue damage on not a clot

✅ Get the veins and details checked about pressure and hopefully not have to take anymore injections.

✅ (Probably get told to take the injections (Just in case)) come home unhappy.

That is the first update done I am off to fight Zombies!

Well, all the ticks should tell you that the news today was all good. The Ultra-Sound man didn’t find any blood clots but did discover twins! See it wasn’t the cream buns after all! The blood was ok, and the other stuff was all good. There were no issues for the legs which is where the DVT would happen. We did have a laugh throughout and I threatened to kiss the nurse when she told me I did NOT need to take the injections to thin the blood. I was so pleased! I was led around the hospital like a dog on a lead as I was rigged up to an oxygen machine and then marched around the hospital. It dropped but bounced back quickly so less concerning. I think its just a case of the chemo has beaten me up and I am not handling it this well this time. I think the lack drink and eating all the wrong stuff has combined to be dehydrated and struggling for everything the good news is that all was passed, and I can get on with counting down to the end of chemo and hopefully normal life.

Wednesday 16th June 2021

What a day that was, a first from memory and a laugh to boot. I will go through this chronologically. I felt a bit brighter today so getting some sleep must have helped slightly. I have the appointment with PICC nurses today as well. The appointment I believed was at 1pm at the same place as the chemo, so I am getting to know this well now. I go straight to the right place and told to hang on. The two nurses in there are the kindest and funniest people you could meet. This maybe my undoing as I said too much!! Damnit!! In the conversation I mentioned lots of things and then as I said should I still be here, or can I go they say. I think you should go to A&E and get yourself checked out for DVT. I agree but laughing so I text my wife and off we go to Frimley A&E again.

I get to A&E and told that DVT is in the legs and go somewhere else. Then I explain the chemo and stuff and they say try A&E first. Third time I go into the unit at Frimley Hospital and 2.15pm seems to be the prime time to go as I am seen by the triage nurse in about the usual time but this time I am taken straight to a cubical. The lights are out in this one and the only light in there is the one for close patient work it is pushed against the wall for some atmospheric lighting. I was expecting a waiter to arrive with a menu and some candles. I had two nurses arrive at the same time one to put in a canula whilst the other took observations. This must have been around 2.30pm which was quick. I then wait. I then play games on my phone. I watch a bit of the football on my phone. I play some other game on my phone. I wake up when a doctor walks in I assume my snoring annoyed them to the point where they dragged a doctor to in to wake me up.

We go through the stories and then dismiss most of the symptoms and she checks my shoulder that isn’t hurting anymore. It HURT when she touches it!! I can tell you that much. They call in a PICC type people of their hospital to come and check along with the doctor speaking to the consultant. First things first another ECG. This appears to be normal the bloods taken appear to be normal as well. So, another chest x-ray and a check with the line people. He checks that the tube is in the right place, and it is. Good. Then he thinks about the shoulder issue and there is not much he can do from here so he will speak to the powers that be. Just as I get called for a chest x-ray. I go on the bed for an x-ray I am not sure what is worse walking down and forgotten or getting pushed through a hospital, sat up on a wheelie bed, which is where the x-ray took place as well. I got back to the room and was told they couldn’t get the ultrasound people here to check the shoulder, so they are going to give me a blood thinning injection and be sent home with some more. I HATE THOSE THINGS!!! Go back and read my post operation section if you don’t believe me. I have two more of them needles and the larger ones as well. Joy! Added to that I must go back to Frimley Hospital tomorrow to check on the risks of DVT as that is the leaflet I have been given. I must keep an eye on things tonight and then take it from there. So, what was the first today, well, I felt better walking into A&E than walking out of it. I had the right hand stabbed three times and the left one twice as the doctor failed to find a vein twice before giving up and asking me to come back tomorrow. We will have to wait and see what tomorrow may bring and as usual whatever will be will be. Just face the bowling with a straight bat and see how we get on huh?

Tuesday 15th June 2021

Well, apologies for the lack of update but the last few days have not been great. Every time I eat, I need the loo, every time I walk anywhere, I need to sit and rest for 20minutes whatever I do is just wearing me down. Yesterday after doing nothing for most of the day. I was asked to hang the washing out which I did and then I went for a lay down as I was done in. I did not sleep wonderfully well. Up and down throughout the night this could be in part due to a change of medication of my usual meds which can result in improvements in my bloods which what was needed but it will affect the bladder, so I need to counterbalance the other. I was up at 6am took my meds early for the day and promptly went back to bed. Waking a couple of hours later I was up showered, dressed, and fed before 10am which sounds a lot easier than it was. I had a blood test appointment at 2.08pm which seemed very precise but there we go. I used this time to write another movie review as I was enjoying writing the bad review the other day, but todays movie was surprisingly rather good which made it harder to find fault in it. That done I was ready to drive to the doctors and despite leaving in plenty of time I was caught in various road works and arrives just before my allocated slot. I was in there for a very brief time, and I was done. I did point out that I could have organised this elsewhere seeing as I have a PICC line in so this could have been done without getting stabbed again.

Oh, well I was stabbed again, and it was the same nurse as last week but this time it hurt. It really hurt she took the blood quickly and I was on my way. It still hurt and I could have easily fallen asleep in the waiting room. It took an effort to get back to the car home safe and I spend the afternoon laid out on the sofa. Needed more liquid which I drunk and then tried to check my blood sugar levels. This is expected to be high due to the chemo and it was at 17. This is not as high as it could be but still high. The issue was that I couldn’t get blood out of my fingers or thumbs it took about 6 attempts and 5 different digits. We got there in the end but currently not doing great at this time. It is weird but after doing a long training walk or charity walk, I always look forward to a full fat red coke, ice cold and leaving the doctor I thought to myself I could get myself one. Then realised that I am completely not coping with cold at all. From the fridge stuff to the freeze, I am not coping with anything at all. Lots of glove wearing and embarrassment when in supermarkets or shops. This chemotherapy has not been a nice one, this time. I am really counting down to the week off knowing that we will be in the final cycle of chemo, and I will hopefully be free from then on. I aim to be getting fitter again as I have failed with that completely so far.

OK I really didn’t want to make these updates just me moaning and groaning and that’s exactly what you got today so I am sorry and conceivably better things will follow. I am back in the clinic tomorrow so we will wait and see huh!

Saturday 12th 2021

I sit and type this with tears in my eyes but not for any of this bull plop reasons above or below in this post but for something completely different and not because Wales are currently losing in their opening game of the Euro’s it is still on so there is still time for them. I am not feeling sorry for myself because of cancer and chemo beating me up. I have just finished the last review of my gig list. Where I was stood in a large hall with complete strangers all there for one reason the love of the band who we were there to see. One common theme and we could raise a plastic pint and hug strangers. Put arms around shoulders and sway and dance and enjoy time together and yes maybe I am feeling sorry for myself, but it feels like a lifetime ago. We are inching closer to having that back and I plead with everyone to stay patient and when that time comes again embrace it and appreciate what was not that long ago taken away from us. For all the right reasons mind you, this is not a political topic raising post but a melancholy harping back to nutting some kid in May of 1998 whilst headbanging right at the front of Brixton Academy. Blaze Bailey was screaming at me whilst I watched my favourite gig (it was held in that position until it was beaten by the same band in the same place in 2007). Please check out the other post as it just reminds me of happier times and great times with great friends and family without being scared to hug and sway together.

Oh, my I just remember another gig that I haven’t covered which I will have to go a review. For the Blackadder fans out there, I have the word sausages screaming in my head I must get this sorted. DAMN IT!!

Anyway, today every bite of anything is making my upper jaw fizz and hurt like no one’s business anything cold hurts to drink and freaking hurts to touch. Especially when you forget its coming and wham! Pain! That’s the shitter and that what I hate. Feeling sick all the time now and nothing I can do about it. Want to go for a walk and its too hot for that. Too hot and cannot drink cold (anything). I am just not happy today, and I forgot a gig that I’ll go and dig up some information about now. I hope you are having an enjoyable day.

Oh and Wales just equalised…

Friday 11th June 2021

I promised more but shorter updates so this will be a snippet again. Firstly, I did not sleep last night not a minute. I saw every minute of the darkness I have been out and driving a little bit today. This cycle of chemo kicked off with a much less tolerance to cold. Both hands feeling it today and my feet were tingly as well today, and they were not cold. I felt like a wally walking around Morrisons with arm sleeve covering the PICC Line and a single glove to pick up frozen food. And just the chilled stuff as well. I had a warm breakfast today and then got through the rest of the day without anything or really wanting anything. I went to the shop and brought rubbish like crisps and sweeps and started munching through them. Apart from that cold drinks have been painful washing with cold water the same. I did manage a snooze on the sofa for an hour or two which made the word of difference after. I feel pretty tired now, but the evening is drawing in and I have tried to avoid caffeine this afternoon. Wrists have not been as painful as before but much more sensitive. My mouth and throat have not been happy with me and showing their annoyance whenever possible. That has been my day. I am just three gigs from completing that other post which will see me move onto another project soon (films will be involved). The Euro Championship has just started after a year’s delay this may affect my updates as well. In summary I feel tired and lethargic again, it’s not as painful but as mentioned its much more sensitive to anything cold. Taste everything is horrible, and I am not feeling anything tempting food wise and thinking and feeling sorry for those that are going through the same as me but for a much longer time. I am her bitching and moaning at 4 cycles where there is those out there with a year or two or continuing with this for years. I honestly don’t know how they do it. I am fed up with 2 and a bit cycles. Sidenote I have two more appointments next week as there are now two other issues developing which we need to keep an eye on. One with the GP which is potentially an issue but then there is a more worrying but there may be a logical reason for this but if the theory is correct this could be over with as quickly as it started. Need to ease up on the birthday presents!!

That’s it for today more soon, I hope.

Thursday 10th June 2021

PICC Line and Chemo day. There was some other stuff to mention as well but I do not want to cause alarm as there is nothing to worry about so I might just keep going with that. I wake up an hour after turning off my alarm and just get to clinic on time. I then go to the wrong place and wait to be told you are in the wrong place. What a fool to go to the PICC support rooms for a PICC line when the person inserting the PICC line was in the Chemo centre waiting for me. I eventually got to the right place and off we go. Compared to the last PICC I had what a world of difference. They connect me up via wires to a three-pointed thing that is about 8” wide that is stuck on my chest. I assume I look like Iron Man with a glowing blue chest. Just an overweight retired Stark in 50 years-time. Anyway, the ultrasound thing is there again but this time with a BARD tracker system. I am NOT repeat NOT! Watching the needle go in my arm so I watch the ultra-sound instead. The answer to the question at the tip of your tongue is yes you can see the vein like a black circle in the middle of the screen you can then see the point entering the vein. I could not feel the tube going in and she was exceedingly kind and kept checking which made me feel safer. Lots of questions throughout. There was also a sterilised blanket to sit between me and my arm along with the nurse. Then we sat watching TV (well the Ultra-sound) to follow where the tracker as it moved through my body. The slider thing on the side moves as it moved inside my vein closer to my heart eventually the tracker and the pulse on the ultrasound matched which meant we were good to go as it turned green. Then there was whole new procedure to remove the blanket and allow me to stand and get going.

From there I walked straight into the Chemo unit with my new shiny PICC line. I mentioned the issue I’ve had over the last few days, and we must go for an ECG whilst on the first part of the infusion. The news from that has been good so on we go with the infusion which was painless and quite productive as I managed to complete one of the reviews on my gig post. [Side note I have gone back to add pictures and video to that post (I’m now worried about the size of the post, so I am splitting them down)]. I was pretty much left alone for the entire time I was there so happily typed away which means I got one gig off the list.

The infusion didn’t hurt this time which was better than last time but what I can tell you is that this time I am so affected by temperature its untrue!! With the heat just kicking in I cannot handle the cold drinks I took a tube of tomato puree out of the fridge today and swore with the pain. I opened a can of Pepsi from the fridge as it was warm this afternoon. I knew I was in trouble when it hurt my fingers just holding it so taking a swig absolutely killed my tongue and throat. He was instantly given away. I cannot use the cold taps and if I do I have to dry my bloody painful fingers pdq!! It is much worse than the last time and more intense as well. I am sure it will improve over time like last time but right now I am not feeling great and probably enjoying last week’s freedom has now come back to bite me on the backside. Let’s hope tomorrow is better. Oh yes, just remembered I got to sleep with a PICC line in tonight… I showed Sean tonight and it was like putting a horror movie on as he squirmed – it was like the scene in Look Who’s Talking (or was it too?) where Mikey covers his eyes and shouts hit the clicker, hit the clicker when they change the channel. I think he understands a bit more about what is going on now.

Anyway, this update is so late its now the next day… so I will try and update more with the low mood and stuff at the moment. In search of some ray of light soon.

Tuesday 8th June 2021

Hello!!

It’s clearly been a week since my last update, which has caused some concern but its all because of selfish reasons. Which is good for me and not so for those waiting for an update. I have had a birthday in-between as well as my wife and my dog. Seeing as I did not buy my wife a present buy gave the gift of money so she can get what she wants. I on the other hand was given many gifts which were piled on top of my desk and this laptop meaning I had to organise not just this desk but the chair (now full of new things) the area around the desk had gained a personal fridge (present) which will now stock up my Pepsi Max’s and some chocolates as well. I had to find a space for it which meant re-organising the area around here before I could find the laptop and do this update.

I returned to my old laptop and decided to re-organised by saving lots of files to the external drive that I have. The best analogy I can give you is its like when you spring clean a bedroom you start with all good intentions then you find something that you forgot you had and go - oh!!! Look I haven’t seen that in years and start scanning through the photo’s taken from years ago. Finding pictures of my dad and family outings, days out and concerts which then led me into thinking about adding photos to the gig reviews. Some gigs were older than my photos so many won’t have anything but as soon as I got to my laptop, I’ve started transferring those across to the reviews. I have also been off the meds for a week, so I’ve been enjoying the fridge and cold drinks, along with ICE CREAM!!! YES, ICE-CREAM which I cannot explain how good that was. The next fortnight with nothing cold and the heat that is coming is not going to be good for me. I felt I should enjoy it while I can.

I am also preparing for the European Championship (the football tournament) we had a sweepstake draw the other night and I have Ukraine and Croatia. Which is not the greatest, but it was more for a laugh and to make the tournament a bit more interesting for those not that bothered. Life is beginning to return to normal for most away from my treatment but for me the only concern weird heart flutters that has happened quite a few times over the last few days. I will ask about that when I go back next week.

This week began with School return today (Tuesday) whilst I went off to the doctors for a blood test. I will be going to have the PICC line put in Thursday morning and then the chemo begins as soon as its in. I may not be able to make the walk this week, but I did manage to go last week which was nice. I haven’t seen Pat in such a long time so that was nice. From there I have been back out walking again with friends and again today to get back from the blood test. Tonight, I will be walking again with a support group I attend so looking forward to that if I have the strength. Tomorrow I want to do something a bit different as it feels like my last day of freedom before I must take ultra-care all over again.

Tuesday 1st June 2021

It’s Tuesday and a new month begins, which means it is time to start a new blog page! With a new month beginning it should mean refreshed hope and the end of chemotherapy cycle number two and I face cycle number three. I am trying to thing of the positives and the big one there is it will mean being over hump day and I can stop counting up and now start counting down towards the end of the therapy. The rumours of a PICC line are true and I have an appointment next week to have one fitted. It requires ultrasound and a steady hand of the person doing it. It will mean that hopefully the wrist won’t be affected too much this time and I will have something different to worry about, with cleaning and such.

The plan is that my medication for this cycle will finish tomorrow morning as I have counted the tablets left and it should all finish then. As long as I can count then we should be all good. It will give me a week and a day off of medication. The end of the medication holiday will result in the PICC line coming in followed almost instantly with the next chemo session. This should be on Thursday the 10th which leads neatly onto the next issues. Appointments as I don’t seem to have any when I should, and I cannot make appointments on the dates that I should be. The move in dates to accommodate the PICC insertion has resulted in everything being screwed up. I haven’t been given a date for an appointment with the registrar and I cannot get a blood test booked anywhere. I just logged on and have the option of this afternoon or Wednesday 9th June and onwards. Seeing as I need to book a blood test 48 hours prior to the chemo means its Tuesday or never. Phoning the nurse, I was asked do you have a PICC line? Nope!!

Oh, then go somewhere else… Not the exact words but this is how is felt. I am losing faith in the system at the moment as I am getting a little fed up with not being able to do what they are asking me to do and then made to feel like its my fault that I haven’t complied with what they have asked me to do because they won’t accommodate me.

The pain in my wrists have continued throughout this cycle which didn’t happen last time. It was all done rather rapidly last time (i.e., after a few day it was all done with). I have taken to wearing a tubigrip on my right wrist and it has really improved how things were going. Pain eased it still doesn’t like being touched and sudden impact is really not a good thing. Cold has been an issue more so this time but when the nurse is worried about it being permanent that is when it got my attention. The PICC will help with that so this will hopefully mean the next cycle will be a bit better. [I may well be living in denial or maybe hope].

But there you go the new blog page is done and the next chapter begins… 👍