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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.

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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

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To OFFICIALLY CELEBRATE 5 YEARS SINCE MY TREATMENT FINISHED…..

We went to LONDON with hubby kids and my best friend for an amazing day….. London Aquarium followed by London eye.. huge thank you to Mum and Dad for paying for this……

From my Facebook page..**With us is my BEST FRIEND Laura … I met a friend via a mummy and baby forum if I recall about 7 years ago ….. and we have been chatting and texting almost every day since…. she was the first to read my blog and my last text at night. Soon I called her my best friend…… I’m meeting her for THE FIRST TIME this weekend…. yup she’s on her way….. all to celebrate my 5 years post treatment milestone….. she’s staying the weekend and I’m sooo excited…. LAURA loves ya babes.**

BIT LONG BUT WORTH A READ … So I lost her phone in Sea Life centre london, on a mad busy day….. No signal to find her phone all the way through the sealife centre which is bloody HUGE …

As soon as we left we used the *find my phone* app on Gary’s phone to track it to a nearby park.

Cue Gary and Kieran running 150 meters (past the London eye) to Jubilee Gardens. Once there they refreshed the location, it was still in the Jubilee Gardens, using the ring function AND the tracker the theif knew he was being tracked , they knew they were being tracked. A man was seen running and throwing a phone into a bin… (It was still ringing) when a man picked it up and answered our frantic calls. My son was getting close with the app and then we heard ITS HER ITS HER…. MUM DAD ITS HERE……we raced over and were handed my phone!….Boom

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Triple therapy and update!


My goodness it’s been so long since I’ve updated and I’ve done quite a lot where to start. As you may know I’ve moved again and I’m now based in Aylesbury which means a new doctor. I had to find a new Mr Moss let’s find someone I can trust and someone who would look after me, thankfully I have! there is absolutely fabulous doc he’s a black Mr moss if I’m allowed to say that, Mr Fasamade. I’m only seeing him every 6 months or if I’ve got a problem which is fine with me. Although we do have a small hiccup at the moment, due to radiotherapy damage I need to have two teeth extracted and unfortunately when you’ve had radiotherapy your bones in the area of radiotherapy do not heal they are notoriously difficult and so it’s not something that we’re taking lightly. I’ve been put on something called triple therapy, which is a cocktail of drugs to try and prevent something called osteoradionecrosis and which can be very dangerous and so we have to keep everything crossed that its not going to happen. The extraction is on the 17th of September, I may have that wrong but about then. So if you could keep your fingers crossed I’d really appreciate that because I am going into it pretty nervous. Its obviously going to be more difficult because of the radiotherapy but also my mouth is still very very sore and tender and having someone extracting your tooth is my stuff of nightmares, but it needs to happen. Here is a picture of the medication I’m on I have to be on it for seven weeks before my surgery and 5 weeks after ive healed from surgery.

Now you might have seen my post regarding me hoping to be peg free in 12 months! This is something I’ve wanted for for a long time and I’ve wished for and hoped for. Unfortunately realistically it may never happen I still have to rely on it for extra fluids and my medication at the very least, there are days that my mouth is so sore I can’t eat food so I need to top up with special drinks and formula. But I’m no longer pump feeding overnight which in itself is a huge milestone. Being hooked up to a pump overnight was not only and nuisance but it made my bed a hospital bed it made me feel like a patient.

I’ve been keeping pretty well recently I’ve been out of hospital most of the time with only a few little hiccups to do with my feeding tube and I had a bout of abdominal pain which we think was down to the feeling tube. So overall I think I’m getting stronger I feel stronger I’m even crafting making and sewing again now and I’ll pop a few pictures of the things I’ve made recently just show off.

The pendants have forget-me-not flowers in that have been dried in them, they are my absolute favourite.

Anyways I’m going to sign off for now ttfn

As always feel free to message me xx