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Forget me not?????! Memory problems and more


Over the past year, and especially over the past few months I have been having real issues with my short-term memory. Not just walking into a room and forgetting why I’m there but being told something and immediately forgetting – or ordering the exact same thing on Amazon 3 times in the space of a few days .. THREE gaming headsets for my son – simply because if FORGOT I had ordered it. Not my finest moment.

My very best friend has been in hospital so we chat on the phone most days and via messenger – and there have been countless times that she has said – “I told you yesterday or an hour ago or you told me yesterday or an hour ago. Its so bad that my doctor’s surgery has the receptionist ring me the day of my appointments so that I don’t forget to come again.

Now before anyone says write it on the calendar, and in your phone, I do, I have and G reminds me before work, don’t forget blaa blaa ….. and 20 mins later its gone – and not just I need to concentrate and I will find it – I mean gone gone NOTHING no recollection at all …..its actually quite scary.

Here’s another example – Kieran wanted a friend round and the done thing is the mum’s text or call to make sure its all okay etc – so I had been texting this mum and it was all arranged and a few hours later a lady appeared at my door and there was a boy behind her….”hello?” I had no idea who this woman was or why she might be here, I just looked at her blank faced for what seemed like an age before she said – its so and so, here for Kieran, at which point the penny dropped, I blamed lack of sleep, and made a joke. But if I’m honest I was embarrassed.

I’ve also been exhausted and by this I mean in involuntarily fall asleep at a drop of a hat (something I berate my hubby for doing), I struggle to get up in the morning as if I’ve not slept at all, I then do school run, return home and I’m normally asleep by 10.30, G comes home for lunch and says I’m always very deeply asleep, I then have 5 different alarms to make sure I wake up in time for school run – BUT even then I have slept through a fair few times. Thankfully my 13 year old is there to pick my 7 year old up and the walk home is nice and easy so the kids don’t mind in the slightest. Whereas me, I hate it – I hate the feeling of not having the energy to get up and pee so just holding it for hours on end, I hate putting EVERYTHING off because I know it will exhaust me.

 Lets say I go to bed a 8pm on Friday night, if G lets me sleep I will sleep till 4 or 5 Saturday or even later, at which point if I wake I make myself have something to drink and go for a pee and often go back to sleep till Sunday midday so 34 hours from Friday to Sunday and that’s the NORM.

So I spoke to my GP about this Dr Hannah (who is soo nice), G was with me for my first appointment about this and she did this memory test thingi on me and it is done on a score, and I dont recall my score (ironic huh?) but she said that it showed that there may be reason for further investigation –

She suggested some blood tests. A few days later I went to the docs for the blood tests and as per usual they had issues trying to find a vein (I will have a post about this very soon) … they goy half a bottle and said they would send it but I needed to book back in for another nurse to try a few days later …..which I forgot to do.

I then go for my results – only to be told I cant have results with out having had me tests DOH

So we try and get the bloods again- lots of try’s later and the send me off to the hospital to get them done there.

RESULTS Take 2

Back to see Dr Hannah and they are “all over the place”… I have low ferritin and low iron and very low vit D all of which in theory could cause “brain fog” and tiredness and seeing as though I have a full house I’m hopeful that we have found the reason, and a fixable one. AAAnd because its me its never simple, all my medications have to go down the PEG so have to be liquid or crushable (some tablets cannot be crushed (im sure there is a very good reason why not- but tbh I have no idea ) anywho… the doc has had to order in these meds especially as I ma going to have to start on a very high dose of a few of them.

The last time I had iron tablets they gave me a terrible upset stomach and I had to stop and I was given a iron infusion and as I am due to have a few surgeries soon that may be happening this time soon if I cant tolerate them again – but lets wait and see.

One last thing – its might be possible that the memory issues are related to my radiotherapy due to the area of the head/brain  that was in the “field” but we are going to look at that as a last resort.

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What does this mean? I cannot go there …not again..


My yearly cancer check-up was this Sunday, it was an overflow clinic hence the weekend. I saw Mr Fasemade who’s the boss man – ie the new Mr Moss.

SOOO, where do I start, I have been aware of a white patch on my tongue for a while, it’s not sore or gross looking its a indent with a white colour. also, I have had a funny feeling when i swallow recently – I kind of feels like one part of the throat is narrower so it feels like I’m swallowing a big lump of food and more recently drink. Now this “symptom” didn’t worry me at all – i just thought it was good old radiotherapy causing the tissues to tighten up or maybe even that it was in my head, i was ramping up towards my yearly check-up so maybe it was in my head – which is why i hadn’t told anyone other than G a few days before the appointment.

So, I go in and as always I notice MR F’s huge hands …. seriously every time I see him this is my first thought… anyway we have the usual hellos and how are yous.
Then it’s time for business, the last time I saw him he said I needed a tooth extracting (side note, radiotherapy demolishes your teeth and makes removal complicated), for this to happen Mr F insists patients have 6 weeks of what he calls triple therapy, which is an antibiotic, a med which helps small vessels have good blood flow and a very high dose Vit E (all from memory so apologies if ive messed up), anyways I was put on this triple therapy and it made me sooo sick, I was vomiting 5 or 6 times every day and felt dreadful, I managed 3 weeks and said NO enough is enough, and essentially cancelled the extraction (this could have gone tits up but I think I got away with it). Mr F then spends what feels like for ever explaining that removing a tooth can lead to osteo-radio-necrosis ie jaw bone death – and that he would need to use my rib or a bone from my lower leg to make me a new jaw as the infection would eat away at the bones of my jaw …. nice huh ??!?

I then tell him I have this white patch and that I have ruled out thrush (something people who have RT get lots of) and that Ive even tried to scratch it off and it has not worked and I want him to look, he does and sees what I mean straight away, he says “it could be s sharp bit if tooth” and shoves a gloved hand into my mouth, feeling for sharp edges, which hes doesn’t find. I say I’m not happy about it and I’m actually quite worried about what this could be. He is very calm and says that we don’t want to jump the gun but he agrees that perhaps we should take a closer look and have a biopsy – he starts filling out a medical photography form, apparently, we need a before shot.

As hes doing this I say “there is this one little thing….. ” and I explain about the throat…. He immediately says, OK we need that scanned – let put it as urgent – and I notice lots of glances between Mr F and the Nurse who was also in the room. He seems much more worried about the throat symptom than the tongue. I’m told i will be contacted and off I go…

WHAT IF

I cannot help but to go there, I have moments where my mind takes me to places i NEVER want to go

  • 6 months down the line I’m on chemo… as I can’t have more radiotherapy to that area
  • surgery .. theres not much tongue to take – what will I be left with – if any – will i talk – will i loose the tip of my tongue this time – –Christ could i loose the whole thing
  • Maybe I cannot take the treatment? let’s face it ive got shitty health and it was so very hard last time – on the whole family …..

Now these are my split-second thoughts so no-one jump the gun, but you really can’t help going there when you have a history like this and TWO potential issues… what will be will be. I’m not letting it control me or take over they are just passing thoughts/worries.

Now a few days later I have my letters for my dates I have my MRI on the 29th Jan and my Biopsy 23 Feb !!!!!!—- I have already called and asked for it to be sooner but was told it was the soonest they had – so I have said that I will take a cancellation appointment and I can be there in 14 minutes.

so now the waiting game…..

or

** surgery .. theres not much tongue to take – what willi be left with – if any – will i talk – will i loose the tip of my tongue this time – –christ could i loose the whole thing

Or

Maybe i cannot take the treatment ? lets face it ive got shitty health and it was so very hard last time – on the whole family …..

Now these are my split second thoughts so no-one jump the gun, but you really cant help going there when you have a history like this and TWO potential issues… what will be will be. Im not letting it control me ot take over they are just passing thoughts/worries.

I have my letters for my dates

MRI on the 29th Jan

Biopsy 23 Feb —- i have already called and asked for it to be sooner but was told it was the soonest they had – so i have said that i will take a cancellation appointment and i can be there in 14 minutes.

so now the waiting game

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It’s not always about the patient !


This post isn’t about me it’s about family and how they are affected by my ill health and my hospital stays. It’s something I’ve mentioned but recently the effects have been bad have been BAD.

As you know I’ve just been discharged after being in hospital for eight weeks. My husband has had to keep the house running, the children going and visiting Me AND all my extra washing as well as things I wanted bringing into the hospital.

Now being a military wife some might say well it’s just the same as when the husband or wife go away on tour. That’s just wrong, when a husband or wife goes away for 4 or 6 months we have to juggle the house, children, dogs, and family we do not have the added stress and worry of having a loved one in hospital and the additional stress of visiting , and finding parking, which is damn near impossible as Stoke Mandiville Hospital! He’s had to cope with the children being upset because mummy is sick, the seven-year-old who is waking up in the night because he misses mummy and is scared that something bad is gonna happen . He then has me phoning whingeing saying I’m having a bad day, saying the crazy patient opposite has been literally screaming for ten hours or that the little old lady you really liked had passed away. Venting my frustrations about Doctors or Nurses or that HCA who was making up numbers when taking SATS (yes I reported him).

When you get home I hope everything will go back to normal but it doesn’t, you come home to a seven-year-old who is crying because she wants a cuddle yet she’s sitting on your lap cuddling you. A child who doesn’t trust your home to stay so doesn’t want to be away from you. One who’s regressed so so much your no longer mummy but mumma.

It gets worse!

While is in hospital I was I thought I kept in the loop about D and how she was coping at school which wasn’t well and what was being done about it.

You come home and take over school run because she wants which is fine and I’m quite liking getting back to normal. Your then told by senior member of staff that she is not just been having a bit of a rough time, she’s now the polar opposite of the child you left.

The highlights.. {scarcasm here!}

*she barely smiles [was known as a smiler last year]

*refusing to work to the extent she has been removed from the class! [just wow this has NEVER EVER happened]

*crys everyday over everything and nothing (again new)

*not speaking to adults well [ok well yes she need reminding sometimes but it’s never been an issue.]

And so much more.

I may have been in hospital, but, she has 2 parents. Yes they told G that she was struggling but OMFG REALLY ….. we could have put things in place .. support or I don’t know?! arranged for me to call her every lunch time … oh I don’t know but SOMETHING … now we are in a situation where it appears that her form teacher thinks she’s a “bad kid” [my assumption not something that’s been said – but I do have my reasons ] Now, they do have pastoral care type person Miss A and she’s great but she’s not in the classroom she’s there as a defuser for when this kick off or have a melt down [again an assumption based on what I’ve seen ] don’t get me wrong she lovely and when D has has a melt down she’s taken her off for a walk so daisy can chat away to her heart content and do a bit if a brain dump- ready to return to class.

My my poor girl [ive not forgotten my boy but I think he would appreciate me just saying how he’s suffered too but because he’s well ard he ok… I joke but seriously – Yes he’s suffered, but since being in cadets he seems to be able to handle things much much better – that said young careers are also helping out]… where was I? Yes D she’s massively been suffering and I feel that we have been somewhat been kept in the dark… perhaps from a well meaning standpoint but one I wholeheartedly believe is wrong.

So …what have we done, tried to reassure her as much as we can especially as she doesn’t believe for one second that I’m not going back into hospital. I’ve sought advice from my wonderful GP who I cannot thank enough Dr L ..and I’m going to see her teacher Tuesday.

Dr L said something that’s very true…

Your family are professional copers…no one knows how much you are going through and dealing with as you have a vissard.

So trying to lower the vissard here’s a few little known family facts ..

Ok dropping my guard here!

G wakes up early every day to prepare my medication. Every day so that I can move in the morning, as without my medication I’m stuck in bed.. [there’s about eight meds, some need crushing and putting into water, some are liquids all need to be in syringes and then go into my feeding tube (PEG)].

Another random one not many people know about is..

I cant be a passenger in a car more than 20 minutes without vomiting [violently even after medication, yet I struggle with fatigue so don’t drive too far… what to do? The thoughts are that the radiotherapy damaged my inner ear massively which also accounts for some of my valence issues.

Anyways this is me signing off – I usually say still smiling but today I am truthfully not smiling

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A little update 4 weeks in hospital so far!


I can’t believe it’s been a over week since I last updated and I’m afraid it’s gonna be a long one much like my hospital stay.

Ok so totally I’m on ward 17 at stoke Mandeville Hospital Aylesbury been here for 5 days or so. I’m going to be here for two weeks at least,

In my last post we had discovered the fact that I have been diagnosed with kidney problem and also was having to have a full-time catheter well, 1 out of 2 is still true. My hydronephrosis (swollen not draining kidney) has now resolved because of the full time catheter which is great, but, it means a catheter has to stay which isn’t great so bit of a, sorry, not sorry situation.

We also found out that I had a UTI which was the cause of my temperatures and I also had an infection in my peg site the *new one.

My PEG died

So who’s with update of where we are at the moment my new peg has broken physically broken it’s unusable! So needs replacing! ordinarily this would be a simple one in one out procedure but as the tract the stoma is new it needs time to heal before it’s safe to switch it out. without that, I have no source of nutrition so I’ve had to stay in hospital and be started on something on TPN.

https://en.m.wikipedia.org/wiki/Parenteral_nutrition

Parenteral nutrition is the feeding of nutritional products to a person intravenously, bypassing the usual process of eating and digestion. The person receives nutritional formulae that contain nutrients such as glucose, salts, amino acids, lipids and added vitamins and dietary minerals.

Tpn is given via a picc line which is like a canula but a lot lot longer it goes in the top of my rear left or right arm across your chest into your heart. Mine has 2 ports and one for TPN and one for fluids and medicines.

So that’s my update for now. I can’t seem to get on with writing much atm. So apologies if this hasn’t flowed well.

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Alright had enough now Fekking fedupski. Back I go…..HMP SMH


Now I’m back temperature 38.6 stuck in this bloody hell horrible hospital and nothing I can do about it husband’s going to get me a Costa Coffee hot chocolate and I’m sat here in a wheelchair watching the world go by.

Fast forward 12 hours and I’m an AMU which is a emergency medical unit or something like that, and we have pretty much concluded that I have a UTI and kidney infection caused by the catheter, which is difficult to deal with because they they can be difficult to treat and the the source of the infection is still there namely the catheter but I can’t do without the catheter because it turns out it has cured my hydronephrosis.

I’m on IV antibiotics and fluids and anti sickness med because of the because of the antibiotics!!

So here I am again back at Square One in hospital with an infection and on my own, only people realise how lonely is being in hospital. Im surrounded by people but I don’t know them by their names or their stories whether they are very nice good people or bad people! Not that I really believe in bad people. Mind you the doctors are lovely here the nurses are so very kind, especially W shes soooo sweet but my god are they busy! but they do a great job.

Speaking of doing a great job, a nurse said something to me today that had me in stitches as you know I’ve got a catheter, catheters sized different sizes for men women children etc well mine is at the smallest you can get it’s a size 6 and that is what is used for a premature babies and because of all the damage that I have down below. Anyways we were chatting and the nurse drops the one liner ” well look at it this way… you can now say your a size six! I laughed so hard I if I could i would have wet myself. Made my day.

Anyways signing off till I know more

Love to everyone reading and as always still smiling

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Embarrassing post


So where do I start, I was discharged from hospital following the Peg change and promptly bounced back in hospital with a new issue, albeit one I’d forseen and have a personal embarrassing problem but I’m not one to shy away so here goes.

I’ve mentioned before that I Self catheterise and that’s kind of normality for me and I can practally do it in my sleep and it’s no problems BUT 11th of this month, I did it and when i removed the cath I has a gush of red blood which isn’t right isn’t supposed to be there and scared me a little to be honest I told the doctor’s because I was in hospital at the time, and they says you’ve just scratched yourself don’t give it a second thought so I didn’t but things got worse it became more difficult to self catheterise and it got to the point that I couldn’t. And if you get to the point where you can’t pee or catheterise, the only option is to go to the hospital.

Knowing full well I was going to have a complete fucking stranger examine my foof not something I was looking forward to, to put it mildly. So there I am legs akimbo they’re trying to catherterise me it’s not happening I told them that I catherterise with, what we call a size 8 French which essentially is a infant sized due to my my ongoing problems. They then have to speak pediatrics and the nicu to see if they can find a 6 french which is unheard of so with a lot of swearing and a lot of tears we managed to catherterise me.

I’m thinking at this point it’s a short term thing little did I know what was to come. I’m giving pain relief and then transfer to the surgical assessment unit and very shortly after I’m told that im being transferred again but this time by ambulance to High Wycombe hospital.

On arrival I was met by some super kind nurses one, V is amazing and moves a million miles an hour but it’s such a caring lovely lady. The doctors were waiting for me on arrival. I see the doctors. and then they drop the bomb shell. My urethra which is your pee tube is so damaged or injured at this time that without the catheter I would not be able to pee and without the cath said there’s a chance that it could heal closed! which is not what we want! They cant even operate to try and *fix* the issue because the tissues become friable.

So have keep it, which involves having to keep a bag of piss straped to my leg at all times! And I have to do this for the next month min but realistically long term. I’ve been advised that given the problems that actually occurred, and given my history and (horrible medical term other medical shite) co-morbidities realistically I need to be looking at a suprapubic catheter which means kind of like a peg for your bladder, in that its external tube on the front of the stomach, obviously lower down that you can either attach a bag or use flip-flo and empty as and when, and the benefits of that is catheters cause infections not using a catheter for me with cause retention and or infections and or other problems.

So I’m damned if I do and damned if I don’t. General aim… to not get infections and to get surgery ASAP !

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Now a curve ball


I only seem to come on here when there’s something bad going on, unfortunately here we are again. I think writing it down helps me process things.

The first thing I say is as far as I know it’s not cancer let me start at the beginning.

As you know I’ve had constant problems with infections in my PEG site, so we’ve been essentially fighting to get a new peg site for best part of the year. Finally it was on the books, thanks to Liz (specialist nurse). Who is honestly one of the kindest people I’ve met on this crazy medical journey, she’s truly on the side of the patient and really really knows her stuff, like no one else!

The plan was getting it placed in September so we were all systems go. Just waiting for a date. I visited my GP with back pain causing chest tightness thinking I had asperation pneumonia again but I wasn’t overly concerned, as my chest sounded clear but my o2 sats were down she spoke to a doc at the hospital for advice. Unfortunately she called me at 4.30 saying that she needed to rule out a blood clot or a missed pneumonia, so sent me to hospital to get some bloods work and x-ray.

That in itself was a nightmare as G had to work the Junior ranks bar and there was literally no-one else who could and there was a function. We ended up asking a friends daughter, unfortunately they assumed G was coming to hospital with me and when they heard where he was they understandably thought very badly of us, thinking G was out drinking whilst they went out of their way to help. Made worse by G being delayed back. So that was pretty shit all round especially as they ended up keeping me in, mainly because my O2 SATs weren’t brilliant. So I stay in for a few days, I start to improve wasn’t needing oxygen at any point so things where good I was going home the next day all being well.

I then get a phone call to say “can you come in on the 16th to interventional radiography to get your PEG re-sited” I say ok no problem I’m I’ll be discharged by then. Then they say, as you already have a bed they can actually will do it the next day which was the 11th or 12th so we go ahead we do the Peg change not the nicest procedure but as far as I know it was ok. The next morning I woke up with a massive fever and my oxygen is like 87%. I’m immediately treated with oxygen and antibiotics. I start improving slowly but surely.

As part of the diagnosing of the infection I had a CT abdomen they found I had free fluid and air in the tummy which is where the infection was they suspected.

But here’s the clanger…. there was a incidental finding of Hydronephrosis of the right kidney with some *Can’t recall name/word* but it meant dead or diseased areas….my hydro thingi isn’t caused by a kidney stone or infection or even a narrowing of the tube from kidney to the bladder, it’s apparently on the inside which is only fixable with surgery.

WHAT THE ACTUAL FUCK.

I mean really are you kidding me…. have i not already had THE worst health and history.

I sware I’m being punished but I wish I knew what for.

I’m feeling incredibly scared right now, they’ve just done bloods and I have to stay in over the weekend due to oxygen plus I have to see surgeons. But I was told today that I would need 2 surgeries one to drain the kidney then to fix the issue.

Now I’ve had bladder problems for years caused by spinal cyst (subarachnoid spinal cyst t4 t5 compressing cord it was removed 2012). It’s caused me to need urethral dilation every 4 to 6 months and needing to self catherterise anywhere from 2 to 6 times a day. I’ve been looked after by the same lady consultant Mrs NC … she’s such a fantastic doctor and person (Sneek peek into how fab she is, when I told her of my cancer diagnosis we just hugged then cried together). Unfortunately with this new diagnosis means the end of seeing Mrs Nethercliffe as my urologist as I need someone close to home now. Think I may email her when I know more! But I’m gutted.

Well that’s me up to date, I’ll post more when I know more.