June 2021
I started feeling a little off pretty recently (March 2021), only small things, mainly pain related, in that I was in pain and it was not going away.
I have been popping more and more Ibuprofen on a daily basis on the run up to being seen by the local vet (The ever beautiful Dr. Christian), and it was getting silly even by my standards, I was taking around 16-32 a day and it was not shifting the acute pain in my neck at all, so after a lot of nagging I managed to get what seems to be a rare thing nowadays, which is a ‘face to face’ appointment with the doctor.
In early June I managed to get a face to face appointment, although mine was mask to mask, but at least I was getting seen, and she said that I needed to be seen at the hospital as soon as possible and booked me in to see the ‘Ears, Nose and Throat’ department.
This appointment was fun! the poor consultant was filling in for Mr. Hogg who was away and this guy was having enough issues himself, his poor wife had been diagnosed with breast. cancer and from the way that he was it was fairly new news.
Arrived promptly at ENT Department and was asked to get my ears checked out first.
The peaks should be kind of central to the square boxes in the paper printout, so you can see the right is slightly off, and the left is not only off but pointing the wrong way, to which I was told ‘You are medically deaf them’, which would have been good if I could have heard them…
So next we have a camera stuck up my nose, and im watching this on the screen as he is explaining what’s normal and not, and then we get to this point below (the photo below is actually from a later appointment with Mr. Lancaster in Liverpool, but the image is the same), where he say’s, ‘That’s a bloody Hugh one!’ Kind of not what you want to hear really…
So at this point I am told the ‘C’ word, i.e. Cancer. which does not really worry me at all, mind you im the sort of person that, if there is nothing that I can physically do about something there and then, then I do not worry about it, no point really, I cannot change it so why worry!
Anyway, I choose at this point not to tell anyway and keep it to myself.
The next thing to happen along the line is an MRI of the head and neck, this is nice again though, you get to lay down on a table, ear plugs inserted, wedges around your head and even asked what type of music you like to listen to, not that you will hear much of it, the MRI is basically a big magnetic doughnut that you get shoved into, all totally painless, and I would have fallen asleep if it was not for the loud noises that the machine generates, you can forget sleep, and be very thankful for the ear plugs and the music, as without it, it would have been totally deafening, but after about 30 minutes it is all over and you are shoved out the door to wonder home at your own pass.
At this point in the running I am now also totally deaf in my left ear and the right one is heading in the same direction, this is caused by the tumour pressing onto the channels that link the back of the nose to the ear and therefore I hear totally squat, unless I can crank my head over and I kind of get targeted reception from my right ear but I have to concentrate. All that I do get is the ear is the quite loud beating on my heart (so at least that is still working), and that noise that you used to hear when you put a large sea shell to your ear, but much louder, not quiet that I thought you get when you go deaf, its just that there are lots of noises replacing the kind of normal noises.
So nothing else done on this visit, basically told to go home and carry on with life until I hear from Mr Hogg’s department regarding my results…
Get a call about a week later to come in and see Mr. Hogg regarding some results, so off I go like the good little boy that I am.
I decided to take Sue with me as 1, my hearing is not brilliant and 2, she is bound to ask some questions that won’t think of, it’s good having a friend who is a good nagger.
This is where Sue hears the ‘Cancer’ word mentioned for the first time and I think she was actually shocked! I kind of secretly chuckled at this point, its not that often I get to put one over on Sue, she is normally always winding me up!
Anyway, he kind of explained everything for both of us, and explained that things will get a lot faster quite soon, I would also need to go over to Liverpool for a consultancy with a Mr. Lancaster and that this will happen fast.
For the fun of it, he wanted to take a biopsy of the neck lumps (Secondary Tumours) and set to jabbing me with local anaesthetic and after a few second I was peeled back off the ceiling with a throbbing neck, the local was not local enough, it bloody hurt, but I was kind of expecting this.
It was not too long after that I received a text message stating that I had an appointment with Mr. Lancaster in about 2 days time in Liverpool – Arrrrr….
I frantically called Paitent Transfers and I can only pressure that they are so used to last minute bookings, that I was booked on a flight to Liverpool in two days time and having to nominate someone to come with me, poor Sue got the short straw.
So the 11th August started off fairly alright, except when we finally go on the plan at Ronaldsway in the Isle of Man, we sore then start and stop the engines a few times only to be told that there was a problem and that we would need to get off whilst they fixed it, not really what you want to hear when you are boarding a plane. Anyway a little bit later we were told that they had fixed it thanks to the help of some gaffer tape and that we were now on track to get to Liverpool.
Plane Landing at Liverpool Airport
Once landed it was a fairly straight forward routine of collecting bags and walking to the exit where we met the allocated Taxi driver and we were delivered to ‘Start City Apartments’ in Liverpool and told that he would be back to c collect us later to go to Aintree for the consultation.
Sue Delduca looking through the menu
Extensive Nasopharyngeal Cancer with Bilateral Nodal Metastases.
Strange how knowing what its called was important, although I cannot pronounce it and will always call it ‘Fred’ or ‘Cancer’ from now on.
Now for the bad bits, what’s to follow. I will have to have a feeding tube fitted, mainly because I will find it very hard if not totally impossible to swallow even my own saliva let alone food, I have beed told that the treatment for this is not at all nice, all those lucky people with Liver and prostate cancers at least can eat and drink, whereas the treatment will cause blistering, ulcers and general badness to happen on all things soft inside my mouth, my tongue and throat will become too painful to basically enjoy anything at all, so I get tubes inserted and possibly the equivalent of baby food push directly into my stomach.
I do get to be pain medded up, if there is such a term, but I am hoping that this will be better than I am on at the moment which is basically not good enough, again more on this later.
7 weeks of Radiotherapy and Chemotherapy, and apparently not the nice stuff either, although I was kind of looking forward to my hair falling out so that I would not have to shave, but he informed me that this does not happen anymore due to the new chemicals they have available to them, so I don’t get a single break!
I need to have someone with me, I asked if Drew Barrymore or Davina McCall would be available, but sadly they do not offer that as a service.
I am going to be away from home for the entire time, fairly bored early own as treatment only takes 30 minutes or so, and later on I will be in too much pain to have any fun at all. My hope is that I can do a little fishing from the shore to take my mind off things as apparently I am being housed in the Wirral very close to the sea front.
And I was also told that it could take a few months to get back to eating and drinking normally again after all this, so basically told to look at around 6 months and pain and discomfiort.
So after an overload of long words, bad news, and even worse treatment to come, we decided to go back to Liverpool and find a nice restaurant for our last meal in the UK.
Turtle Bay Liverpool
Great Food at Turtle Bay in Liverpool
Iv’e been back home for a while now with nothing happening and not able to get any information at all from anyone, up until the 23rd August where I have to go to hospital to have a general anaesthetic and whilst under they can get a good biopsy of the primary Tumour at the back of my nose and also have some major work done on my teeth which I was dreading as I was told that the radiotherapy really does hammer any problematic teeth, but thankfully this was going to be done whilst I was asleep and I was going to be first in and hopefully first out…
A very ill James Sawle
Thankfully I do not remember any of it, in fact even after coming out of it, I don’t remember much of this day, except the pain in my mouth, that hurts, but me and teeth hate each other anyway so I was kind of expecting this, I cannot feel anything of the biopsy at all, but was told it went well and will be sent to Liverpool as soon as they can.
Me Wheelchair bound
I was not really being pathetic, I was suffering from a kind of Vertigo, but happy to be pushed around Tesco’s seeing just what it is like being wheelchair bound.
One week in and not heard anything yet, its the long gaps that make you kind of worry, although I am not worried about the treatment, but will I actually get treatment!
The last few days have been quite bad for me, constantly in pain and getting to the point where 2 codine in the morning and two a night with Morphine chasers are actually not cutting it. The last two days I have woken up and not even been able to go near my mouth with a toothbrush, although I have been sick every morning, maybe this is something to do with the meds, but was only told of getting clogged up being a problem, anyway the pain has now got to a point where I am not enjoying any time of day at all.
Today has been a really crap day, been falling over a lot, very dizzy, wish I could find something to keep down but not a lot happening in that vain at the moment, managed to not take any medication today, and basically feeling numb, the pain is quite high and I hurt whenever I move my neck but trying to hold off as running a bit low on the pain stuff and want to make sure that I have enough to take with me if I end up going across for treatment.
And there is good news there hopefully, I got a text message today stating that I will be getting a call from Liverpool tomorrow afternoon, fingers cross I can start to relax a little more.
Got a call from the main man in Liverpool who is dealing with my case, and although things are not going how I was expecting them to go, there are kind of going forward.
He is going to arrange for me to have 9 lots of Chemotherapy here on the Isle of Man via IV’s with a week gap afterwards for my body to recoup and then loads of tests, and if all is alright, repeat and off we go again. It is not going to be fun though, won’t be allowed visitors, not allowed to go out, as my immune levels are going to be servilely hit.
At some point over the next 9 weeks I will also get a feeding tube fitted as if the Chemo does not kill the soft tissues within my mouth off then certainly the radiotherapy will and he said that he is expecting me to be not able to eat and swallow fairly early on, which is going to be fun – Not!
After the 9 weeks of Chemo I am then being sent to Liverpool for both more Chemo and also daily Radiotherapy for up to 4 months, so Christmas in Liverpool.
Weekend of pain has flown by and no post this morning, at least it is keeping me fit, post box is at the end of the drive and about 300yds and driveway and stairs to get to it and back, must have walked it about 10 times today, just one of the rare days of no post at all, really annoying when you are waiting for things to kick off and start.
What a cock-up!
I get a phone call stating that I need to be at the hospital for 12:30 for a Pre-Assessment for the Chemotherapy that I am apparently starting on Monday – Yippee…
So I get to the Hospital, Telephone the number for Oncology as they are not allowing anyone to just walk on it, pretty logical given the Covid crap, get asked my name and then a blank, after which I get, sorry we don’t have you on our list, so I give them the details of my consultant on the Isle of Man and also the consultant at Clatterbridge, and told that they will call me back…
After about 40 minutes I call them back, well im sat in the car getting thoroughly pissed off only to be told that it seems Clatterbridge was expecting me there today at 12:30 and not in the Isle of Man, the person dealing with the paperwork had obviously ignored looking at where I live and had not bothered to contact Nobles to inform them.
Luckily, and you have to thank the good staff that we have here, phone calls were made, hopefully a few loud words spoken and I was greeted at the door to be told that the can do the Pre-assessment but it will have to be in the morning, and not to worry, they had contacted the pharmacy in Nobles who luckily had been told to expect me on Monday and therefore had already stocked up on the Chemotherapy chemicals for my treatment, so hopefully things will finally kick off on Monday, Fingers Crossed….
Nobles for Pre-Assessment
Things look to be back on track.
Had a load of tests this morning which took me through 3 hours of sitting around in quite comfortable chairs with loads of things being explained to me and pints of blood being drained from me for tests and level checks for things like white cell counts, etc.
I was then sent on my way to have a somewhat relaxed weekend ready for treatment start on Monday, which will be a quite one affair, around 5-6 hours in the chair.
For what is happening I have been given some sickness tablets to hopefully stop me from throwing up, some drops for my tongue and throat which is way too dry, and again told to not worry about over-dosing on the pain meds, they are quite happy to have me dosed up on the morphine and codeine mix so long as it is working, and have told me that they will be taking better care of the levels of pain that I am in whilst I get the Chemo drugs.
I have actually lost 1 whole stone in weight in the last 3 weeks, good for me but they are not too happy about that.
So finally sent back home after loads more tests and feeling a lot happier about what is happening, just have to see how I take it…
Did not get a lot of sleep last night, I think I finally drifted off around 3am, only to wake myself up at around 7am, at this point I dragged myself out of bed for the normal over-dose of pain medication.
I was told already what the Chemotherapy drug was called but like most medical terms you easily forget what was said especially as they are always strange words that are never spelt like they need to be.
Anyway, after returning home on Saturday, I sore that I have finally got another letter from Clatterbridge that informs me that the treatment that I will be on is called: Cisplatin and Gemcitabine and is referred to as ‘GemCis Chemotherapy and I like it that the Risks take up a page and a half compared to the one line of the actual name of the stuff.
Risks are Bruising and Bleeding, Anaemia, Feeling Sick (Already got this one), Tiredness and Feeling Week (Yep got that too), Kidney Issues, which I suppose must be expected after all its basically a poison! Liver problems, well if you are affecting the Kidney, you may as well enjoy the Liver as well. Chills, Muscle Pain, swelling in the face (I am so going to get called names), Excess Fluid, Blood in my pee, Shortness of breath (Got this just wearing these bloody face masks), Skin Rash, Hair Loss (I wish, I hate hairs in my ears and up my nostrils), Hearing loss (Yep that’s another already got), Increase risk of infections, basically got to stay away from everyone, Loss of appetite (Got that already as well), Alteration in Taste (Yep and its not because of Covid – Been tested so there!), Constipation (That’s why I have Ice Cream), Sweating (Thanks), Runny Nose (At last something I don’t have already), and the list goes on basically covering everything else that you would expect, its almost like filling in a car insurance form where you know that if you ever claim you will only get enough back to buy a replacement bulb if you are lucky.
The last page has on it a quick note about making a Living Will, so I suppose if the Chemo doesn’t get you, and the side effects don’t, then at least those close to you will know that they will still be looked after once they suffocate you with a pillow in your sleep!
So, all good there!
Is it weird to actually be looking forward to treatment today? My thoughts here are that at least something is now happening at last, it’s been a little worrying, as just in the last few days another lump has emerged and pain is still increasing daily, the meds kind of take the edge off, but I am suffering worst luck, I know that this won’t change instantly but I do wish that it will, the hearing is what annoys me the most, or at least the lack of it, what it leaves me with is a constant hiss, along with the loud beating of my heart, which seems louder than what I can hear out of the semi-good ear.
Nearly 9am, and soon time to take my sickness tablet (Emend 80mg), this is to hopefully stop me from throwing up during the treatment which I start at 10am…
10:00am started prompt, checking of weight, blood pressure and sat in chair all ready to be plumbed in to the mass of tubes and bags of liquid that were already being placed around the bed on various apparatus.
The nurses are really great, especially after I was a woos and fainted after my canular was installed, blood pressure went really low, must be down to the stress of what’s happening, along with my breakfast being vomited all over the bathroom floor earlier.
12:50 and my second trip to the toilet in just a few minute (I am going to get very bored about this very soon, I can see…).
I am being pumped full of liquid, a drug to make me visit the toilet a lot (which is so working overtime at the moment) and a Steroid, all along notes of fluids in and out are being taken to check i’m fit enough for the next bit.
So being pumped full of liquid has the great side effect of going to the toilet a lot, which is always great when you are tethered to a machine and bags of drugs.
14:00 and just started on the god stuff, at least the first of the good stuff anyway, it has to be kept hidden from the sun, which was worrying…
, and then I sore the feed rates on the machine…
‘666’ – It must be evil stuff after all.
Around 15:30 I started to get very hot and uncomfortable, and actually started sweating quite a lot all of a sudden, this enabled the swat team of nurses to drop everything and un-plug me, change bags, and yet more tests were run to check the normal as well as Liver and Kidneys, meanwhile I was placed on drips of water to flush out any issues, thankfully after about 20 minutes this seemed to return to normal and after another short time things were kicked off again with the Chemo drugs until this batch were gone.
Back on the last dose of heavy Chemo drugs
After another flushing through with saline, I was given the second Chemo Drug, this was the worst of the two, both in potency and quantity of drug, by this time I was all alone in the ward.
Watching Films in a big empty room
18:00 and still going strong, with most of the drugs in, I had to wait around for a final flush, a few more checks, another trip to the toilet which I had been doing at least every 20 minutes, I was wondering at this point if I would be able to make it home in time for a toilet run, but poor Megan wanted to go home, it had been a long day for her too.
Last one there, Been a very long day
So made it home by 19:30 and yes the first stop was the downstairs toilet with a big sigh of relief, the rest of the night was sent having a small frozen meal (about all I could handle), loads of drinks, settled for Ginger Bear as very good to stop you feeling sick, I do not feel too bad, considering what I have gone through today, i.e. the being pumped full of poison, and I have been really well looked after, especially the few times that my body let me know it was not happy about something, the nurses sorted this out fast and I was feeling much better in a really short time indeed.
10/10 for Nobles staff.
Now back for a few hours and trying to relax, I have a lot a pain in my legs and back but nothing that a coding and some morphine won’t help get rid of, I am not exactly comfortable, and certainly not looking forward to all this kicking off again next Monday, although more Blood tests on Friday, which I must remember to book tomorrow.
God I feel Crap, been up since 5am, and totally different from yesterday.
Last night I was drained but I did not feel sick, this morning I have been fighting the urges to heave chunks, which has been very hard visiting the toilet, the sight of it makes me gag and I have to fight back the actual throwing up.
I took the anti-sickness liquid stuff this morning that they gave me, no way could I stomach tablets, that I don’t think helped too much, but being too early and really tired I suppose did not help, I got dressed and even needed a wooden jumper (don’t normally feel the cold), and promptly drank loads of liquid and covered myself up on the duvet and fell asleep (thankfully).
9.22am Been woken by the demands of my bladder and very unsteadily staggered to the toilet, then managed to sit down in the office to type this out and take the first batch of tablets for the day which thankfully (and hopefully) include the second of the sickness tablets the oncology department gave me, the hopeful bit being that I am hoping that this will work, the problem though is that I don’t want to move, even if I belch my whole body moves and I feel its going to be the start of me trying to reach the toilet bowl on time, I need to eat, but I don’t really know what I can stomach making, let alone eating at the moment, even the thought of this is making me feel crap.
Normally I am the type of person that if I feel that I want to puke, I just go and get it over with, knowing that normally you feel better for doing it, but this feels so different, it feels that if and hopefully not when it starts, it will not stop for quite some time, really just trying to stay still and keep my mind blank, which thankfully I am very good at having not a lot of anything inside my head!
I spent the rest of the day trying to sleep in-between taking meds, checking blood levels and again trying to eat and drink, which was very small amounts of soup, jelly’s, and sips of anything IO can keep down. I was not sick all day but I felt like I needed to be, its not nice at all, the constant belching and trying to hold it down is not fun at all, I feel pathetic, and somewhat alone, I get visits throughout the day from Sue who is a welcome visit, although she often wakes me up, but I am grateful. There is not really a lot I can do, I kind of wish my office was finished so at least I could have turned on an old radio to listen to it and then lay on the floor on a duvet to the sounds of Ham Radio, maybe soon.
The rest of the day was uneventful, I carried on feeling crap all day, its not nice and its starting to wear me down somewhat, I even wonder if I can handle what’s to come, this is bad enough and if I feel like this after just one treatment of Chemo, what’s it going to be like after 9 weeks!
Not good again today, been feeling bad all night, kept waking to go to the toilet from around 3am and at least every two hours or so, still not been sick but cannot shift the feeling that I want to, and this is the worst bit, it really takes it out of me, I think if I could get rid of the feeling I would cope a lot more than I am.
I finally woke up for good at 6am, basically could not cope with lying down, although this was replaced with lying down in front of the TV in the long with the occasional cat trying me out for comfort, sometimes tolerable and other time evicted when it got too painful.
I feel worse.
Just very sick feeling, no energy, I even put off writing this till midday as could not face sitting upright, my breakfast consisted of a Jelly, 2 Ginger Nut Biscuits (apparently good if you feel sick) and sips of squash. Everything tastes horrible, you hear about what Covid does to you, I kind of understand what it must be like, the meds I can understand, but things I like have changed dramatically, even orange flavoured jelly’s taste burnt.
Sue kindly popped down to the chemist to change the foul tasting medicine to tablets which at least meant that I did not have to put up with that taste in my mouth for ages, she came back with some packets of sugar free sweets to help me lubricant my mouth and thankfully the liquorice drops taste right, this is about the first time anything has.
As the day went on the worst I feel, I am trying to eat, but its hard, things taste wrong and I feel like I so need to puke, its not a nice feeling at all, and nothing like being drunk after a night on the town, this is so much worse, my whole body feel sick, I cannot get into a position where I am comfortable and every time I move I retch.
I had some Flake Ice Cream tonight which gave me about 10 minutes of relief but not much after that.
I finally put a call into Clatterbridge telephone support for cancer patients which was good, they in the end though said that I am not yet in a at risk category and my best bet it to phone my doctor in the morning to see if they can give me anything more potent to get rid of this feeling.
It’s not 1am and I cannot get to sleep, cannot get comfortable at all, feeling so crap, really don’t know how much more I can take, it worries me this is just the first lot of Chemo, I already feel like giving up.
Slight Relapse Day
Basically not a good morning, felt really off, found it hard to stay upright and waned to wretch all the time, was not comfortable at all, Sue dragged me to hospital witch was really bad, the trip down our lane nearly killed me, and every pothole on the way to a main road was a real killer, when we got to the hospital they rushed me in using a wheelchair thankfully and I was so happy to be able to just lay down and relax a little, still wanting to be sick but at least I could try and relax.
They put me oil a drip and shoved loads of fluids into me as well as some different anti-nausea meds, these thankfully seemed to do the trick and by around midday I was starting to feel human again, I know its going to take a while to iron out what meds work for each individual, but I am not joking when I say I would have been a lot happier to be dead than carry on with what I was one, it was so not fun.
I have now been home for a few hours and starting to feel a lot better, checked my sugar levels tonight and they are through the roof (25), so something has set that off a little, most probably the Oasis I had on the way home, bound to be full of sugar but it was cold and tasted good.
We had to pick up some new meds from the local c chemist so I dropped of a bouquet of flowers to say thanks for all that they have done lately, they are a really good team in there and always helpful, but have had to dig deep to make sure my meds are always ready with the amount of changes that have been made of late, and its always nice to let people know they are appreciated, I seem to have very few friends left of late, the closest I have is a great old couple up in Regaby who I regard as the best friends anyone could ever want, sadly I do not get chance to do much for them nowadays especially with my illness, all my other Radio Ham friends have either gone silent key or don’t see or hear much because of there locations or work.
I got a great little e-mail sent to me today out of the blue which really gave me a boost.
I really was touched by this, these guys were such great company, and I really like to think of them as all very good friends, this is what makes amateur radio as a hobby so good, its not just when you talk to people like this but when you get to meant them and help each other out. I still often think of Erwin (DL6SBN), one of the crew that visited here, he was also a good friend who was sadly now silent key but will always remembered. Basically good amateurs will always be remembered.
Sop that really cheered me up somewhat, kind of needed it, I know I have support from friends her, other amateurs such as Mike, and Dave are always sending me messages on Faceache and they are always gratefully received, distant family members have cropped up of late and memories start to come through that I have not thought about in a long time.
I am finding this very heard, I hope that once my body excepts the anti-nausea and pain meds I can start rebuilding a kind of existence, the last few days have been very hard, much harder than I ever thought that they could be.
I have only a few things left that I want to do in life, Get my radio shack up and running. again, with as many old radios as possible, you have to love the smell of dusty valves in the morning. Do some fishing, I have so much gear now and considering that I only manage to get out a few times a year it is not just right! need to get out more. Maybe get a small fishing boat 20-35ft and do some nice wreck fishing again.
You have to look forward, alkyl the messages I get tell me to, goals set, and hopefully I can get through this to tick a few off.
Meds Changed
08:37 – Meds have been changed and I am feeling almost human, I can at least walk to and from the long to watch TV without actually feeling I was in the wrong house and taking about an hour to do so. Still feel very fluffy but hopefully this will sort itself out after a day or two.
New Meds means yet another spreadsheet, the only way that I can keep track of what to take and when to take them, going from about 4 tablets a day to about 40 a day is so not fun, bloody hate tablets, and a few of these I have to keep on my tongue to dissolve so that they get into the bloodstream fast, but why are these the ones that make you want to gag?
This is so much better than yesterday though, head feel clearer, and I am not in pain or discomfort, still not 100% but then I’ve got cancer, I won’t be for a while, but at least I do not want to end it, which I was supposed at me feeling that over the last few days but I really thought that was the best option, just goes to show that you have to stick with it, the girls in Oncology in Nobles have done a great job, I really appreciate their help, fingers crossed the next batch of Chemo will not mess me ups like the last one did.
21:55 – Feeling wooly! It’s been a goodish day, got taken out to do some shopping, not that I did much, managed to not feel sick driving up our lane and thus thew trip to town and back went one as well. Walking to the bank was a little strange though and it kind of went a little downhill from there, not too bad though, just had to walk like I was 100 and slowly, once home though I fell asleep and most of the afternoon was thankfully a complete blank, woke up to a cat on top of me and a craving for the toilet. Looks to be an early night.
If this is what it is going to be like then I can take it, hopefully the next few days will be just relaxing and trying to not do too much, roll on Monday and the next batch, will have to wait and see what that is like…
Awake! Semi anyway…
Not had a good time, this seems to be the norm for the ongoing times but I am seriously hoping that this is not the case.
Yet again on Monday (27th September) I was delivered to hospital for my second dose of Chemo, and yet again I was a mess, choking and very dizzy, with it came sickness, and again I am placed in a side room in the Oncology ward whilst they pump me full of liquids and try to figure out what is happening.
Anyway the long and short of it has been because they originally only gave me a few days of nausea meds to cover the first time that I was in, and they ran out over the weekend, I therefor got dizzy again, this kind of knocked me for six, I then don’t eat enough, I then loose weight (now down to 85.7kg, sorry cannot remember what it is in English), I then get tired and sleep all day, and then I feel crap because of it and then get more dizzy and so on and so on…
Everything was off basically and filled up again over Monday night which is not a good thing to be in hospitals overnight nowadays, but needs must and all that.
By the time that the morning came round though the nurses were busy. I suppose like us all they turn off to the moans around them, but there was just 4 on our ward, 3 needed the toilet (me included), one poor chap had early dementia by the look of it as also COPD which meant he basically was coughing all night, and we were all in discomfort. Remember me mentioning the nausea meds? Well, I was overdue one and starting to feel very off indeed, head was just spinning, I’m tied to an IV that meant I was having to visit the toilet about every 2 hours for a pee anyway, and with the lack of sleep, food (only been given a small ham sandwich and a pack on Ginger Rings Biscuits in my day in hospital) and I’m sure all my levels were down yet again! I couldn’t move, and eventually I had to start crying out as desperate for some relief from both ends of me, my head meant I was not only stuck in bed but would soon suffer from something that had not happened since I was a baby.
I know that these poor nurses are busy, and I really cannot fault them, but one minute they are all over you and come back to tell you that your basically down because you are not eating enough, and the next they are ignoring you because you have been stuck in a side room and they are busy else ware, or just busy and they are trying to catch up on paperwork and other duties, I know that I am not the only person who needs them, but they do get side tracked a lot, as do we all. It was the fact that they kept saying that I needed to be eating more and much more regular, especially being a diabetic, but I had to ask them for food after missing out on lunchtime and evening meals because I was in a side room, and when I did ask, was told that because I had missed out on the normal meals all they could do was a small ham sandwich, thankfully at about 7:30pm I visitors who thankfully brought me in some biscuits to munch on which at least pout something in my stomach overnight.
So back to where I was – dizzy and desperate for a pee! I was due a tablet for the nausea at about 8am, by 9:30am I am a mess again, could not even sit up, so the nausea meds were given to me by this time in the arm, down the IV that had been making my bladder work overtime.
By 10am I was finally feeling human again and started to sit up and come midday I wanted home!
The long wait!
Hospital time is never a good thing to count on, they don’t seem to have minutes, it’s always in hours and lots of them! And waiting to be allowed out and freedom was on the top of my list at this point, God knows how I am going to cope when this does get worse!
I met with a very attractive dietitian who was very nice, but I was getting very subconscious of my bad breath at this point so could have done without that and looking into the eyes of an attractive nurse and trying to concentrate is a really hard thing to do.
Soon woke up when she was talking about the feeding tubes that they insert and the one that was recommended by the cancer staff in Liverpool (bet its cost or ease of use related), would need to be fitted with the help of a camera down the throat and also be left in for about 3 years…..
Not happy about this, I have problems swallowing bloody a small tablet now but shoving a SLR camera down my throat (I know it’s not an SLR, but it might as well be!) is not going to happen, I am getting really stressed with taking tablets now, thinking of this is going to freak me out more. It’s kind of like a horror movie playing in slow motion, where you know things are coming and they are scaring you, but you have no control over it and the more you know what’s coming the longer you have to wait and the slower its getting, it’s just there pounding in your head, scaring you more and more. It’s ‘Tablet-Gate’ all over again!
So the long and short of it is:
I’ve now got a tablet taking phobia because I am being pout under pressure to take more tablets, and regularly to keep my fitness levels up!
I am not eating enough because I don’t feel up to eating because I am getting stressed out with what’s happening, which makes me not want to eat, which then makes me sick which makes me not want to eat!
Making seance so far???
The Chemo makes you nauseous, which means that you then don’t feel like food, which in turns makes you feel sick, so therefore eat more, but you can’t because you feel sick!
Because I find it hard to take tablets now, I therefore have been getting nausea, which in turns means I cannot take tablets now, which makes me sick!
Kind of loads of circles and being someone that never used to have table phobias, or worry about anything, the cancer is becoming not the thing that I worry about at all, but it’s all the problems I’m picking up that not only are the things that I worry about, but things that never used to get to me now are controlling my life – ARRRRRGGGGGGGGGGGGGG!
I need to get a hobby! I need my office, I need the cost of wood to come down so I can finish my office and take my mind to a nicer place, restoring old radios or at the least playing on the radio.
Yeh like that’s going to happen any time soon!
