Latest blog

Uncategorized

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

Advertisements
Uncategorized

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

Uncategorized

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.

Uncategorized

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

Uncategorized

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 !

Uncategorized

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.

Uncategorized

The battle continues ….. smiling still (occasionally through gritted teeth)


Hello and thanks for reading if your here. I haven’t updated in quite a while which i’m taking as a good thing as i think it means i have not needed this outlet, and perhaps we haven’t had too much going on…. that’s sort of true.  although i am about to have a small operation to put a new PEG in as i have had so many issues with it.

I will start with the amazing fact that we are now post 5 years (2 months) since i finished my treatment, BUT what many people don’t realise is that this is not always the end, ill start with something i shared on my facebook page.

Life after Cancer –Fun fact – When i eat orally, which i don’t do often, but food quite often goes up my nose — and there’s only one way out!
Its a horrible sensation and at times painful but more than that its like the feeling when you get water up your nose when swimming, you know?? then you have to force it out your nose …. sexy no????

Life after cancer for many is a new normal, weather it be a breast cancer patient with lymphedema in their arm or arms or a head and neck patient dealing with a physical change to the face and neck (one that other may see).

Cancer for many leave mental scars that no one will see, for example if i slip off my pillow and wake up laying flat I cannot get up – my neck muscles have atrophied and been cut in places — when this happens my mind jumps back to the times that i was attached to a metal table by a face mask – unable to move – my head squashed in a plastic jail – its a feeling of helplessness, of panic – it doesn’t last long, but long enough.
please join me in saying #fuckcancer 

Another fun side effect is travel sickness …. to such an extent we take sick bags everywhere – i throw up after i have been a passenger for anything more than 10 minutes – sometimes less —- we have tried sea bands but due to the anatomy of my left wrist (donor site) they don’t seem to work – cyclizine – gives me an extra 10 minutes and ondansetron sometimes works … its not just vomiting its a woozy headache that makes me feel rough – its the physical pain of vomiting violently, when you have a PEG vomiting pulls the tube and it HURTS – then theres the effects on the children and G – they seem mum throwing up heaving and looking poorly all the time – Now i don’t get sick when i drive but i suffer from fatigue and at time take strong painkillers so cant always drive!!

 

All of my readers aka friends will know my health is fragile its a balance, both from my cancer side effects (ie radiotherapy damage mainly) and spinal issues, which include cord impingement symptoms and discoordinated bladder etc and my pelvis problems (post metal fixation causing hypermobility in SI Joints causing sacroiliitis). I have to trust how i feel – i get infections that go nuts quickly –  and have UTI infections monthly, but i am extremely lucky to have an AMAZING doctors surgery – so amazing that they see me same day when needed (i don’t use this facility unless needed), from D and J on the reception who know i need a double appt as a rule to the nurses who work with my incredibly difficult to find veins for my regular blood tests. To the pharmacist who has to work extra hard as i need all my items in liquid form for my PEG or for them to be crushable (some you can’t crush – or may be known to block pegs) – she always has a smile and nothing is every too much … & the DOCTORS my goodness they are simply out of this world – here’s a few phrases they have said *you know your body better than anyone tell me what you need from me! *do you think you need to go in? (inpatient hospital) – they always have time for me they have never in my hundreds of visit have made me feel like i have wasted a second of their time or that they are not genuinely interested in me… its a lovely feeling to know this fantastic facility and safety net is there for me.

 

More recently i have been having a few problems, i lost 10kg very quickly and without meaning to ( now i don’t mind but as it wasn’t on purpose it can be a sign of other things) and i have been having muscle spasms … so very severe in my neck, they go into spasm and contort my face – i cannot speak or move my neck and it is extremely painful and they come in groups (for want of a better term) as soon as one stops another starts and some even affects my tongue muscle… OUCH … and the past 2 weeks i have felt like i have a pneumonia ie unable to take a deep breath and having to catch a breath at the end of sentences and a ring of solid muscles mid back round to sides – this is restricting breathing as well.

TRYING TO HELP MYSELF

** I went for a massage with Becca at Scruples who are BRILLIANT in hope of getting the **muscles released but, in her words she *couldn’t get through* and shes awesome so it **certainly wasn’t for the want of trying so that didn’t help.

**I am also addressing my diet – or lack of as i live on ensure drinks via peg and odd **snippets when i’m able to swallow (it comes and goes and technically i’m advised not **to try solids at all). Anyways i have decided that i am going to be adding some juicing to me diet (super shots) alongside some specific natural additives

  •  Manuka honey – which has amazing healing properties – i even had manuka        dressing on infected wounds in the past – its THAT good …. and its tastes AMAZING
  • Aloe juice with cranberry – also is great for digestion and healing and the cranberry is good for bladder health
  • a probiotic which is something most peg users need.
  • Turmeric – which had been proven to have powerful anti inflammatory effect and a strong antioxidant
  • Cacao boost – which is Cacao, Lacuma, Hemp and Maca > these are antioxidants, packed with vitamins and minerals, high quality protein with lots of amino acids and a good source of fiber
  • Flaxseeds -Omega-3 essential fatty acids and fibre
  • Supergreens from bioglan which has iron, Vitamins B12/C/E/Zink

I am not going bonkers with it (it was after weight loss btw) i am adding a few things each week to make sure they agree with me etc. With the amazing advice from my jetsetting sister Jo i am hoping to help improve my overall health – even if it makes it 1% better it has to be worth a shot ??

 

I will just add how amazing lucky I feel to have a fantastic family – we are just finishing out 6 weeks summer holidays and i don’t think i have shouted at me kids once !!! They have been amazing and Gary had been great he took 2 weeks leave staggered over the 6 weeks, which allowed me to rest (i slept for 23 hours in one go last week).

 

family london eyefamily pictire london