Tag: surgery

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Taboo… surgery – way TMI – Prolapse Surgery

mycancerandme

Its no secret that i have bladder issues but for obvious reasons i have chosen not to mention my bowels – but you know what?! EVERYBODY POO’s and farts FACT and being able to speak to your doctor about this without be embarrassed is hard – but necessary at times.

So lets rewind – years and years ago i was diagnosed with a prolapsed bladder, this is, the wall of the vagina at the front supports the bladder – keeping it up rite – but my support wall had collapsed somewhat, this is called a cystocele or bladder prolapse -the symptoms as listed on google are ..

The symptoms of a cystocele may include:

  • a vaginal bulge
  • the feeling that something is falling out of the vagina
  • the sensation of pelvic heaviness or fullness[
  • difficulty starting a urine stream
  • a feeling of incomplete urination
  • frequent or urgent urination[12][1]
  • fecal incontinence[13]
  • frequent urinary tract infections[7][12]
  • back and pelvic pain
  • fatigue
  • painful sexual intercourse[12]
  • bleeding[14]

these can and most probably are effecting my bladder function and the chances of getting UTI will be increased due to not emptying fully. As you know i self catheterise, but I’ve not mentioned i regularly have issues with this caused by the prolapse. So fingers crossed.

Sometime after the initial diagnosis of the bladder prolapse i noticed i was having had problems going for a number 2 – and it turns out there was a very similar issue on the back wall of my vagina!!! Amazing, I get all the luck.?!? – !! (although i will say i have very little symptoms from this especially looking at this list. )

The symptoms of rectocele may be vaginal, rectal or both, and can include:

  • A sensation of pressure within the pelvis
  • The feeling that something is falling down or falling out within the pelvis
  • Symptoms worsened by standing up and eased by lying down
  • Lower-abdominal pain
  • Lower-back pain
  • A bulging mass felt inside the vagina
  • Vaginal bleeding that’s not related to the menstrual cycle
  • Painful or impossible vaginal intercourse
  • Constipation
  • Problems with passing a bowel motion, since the stool becomes caught in the rectocele
  • The feeling that the bowel isn’t completely empty after passing a motion
  • Fecal incontinence (sometimes).

Oh and just for shits and giggles i also have a uterine prolapse and here’s the symptoms for that one

Mild uterine prolapse generally doesn’t cause signs or symptoms. Signs and symptoms of moderate to severe uterine prolapse include:

  • Sensation of heaviness or pulling in your pelvis
  • Tissue protruding from your vagina
  • Urinary problems, such as urine leakage (incontinence) or urine retention
  • Trouble having a bowel movement
  • Feeling as if you’re sitting on a small ball or as if something is falling out of your vagina
  • Sexual concerns, such as a sensation of looseness in the tone of your vaginal tissue

S0 – i saw the surgeon back in Feb 2018 and its taken this long to get things moving (i was taken off list when i was in hospital for the 2 months and had to join at the back!!! ). I saw a female doc who had very little knowledge of EDS to start with – and kept saying that i was too young to have this wrong with me and asking if i was i sure i didn’t have a vaginal birth ???

UMMMMM Yeah pretty sure !!!!

Anyway I have the extremely uncomfortable examination – and as shes taking off her gloves after and just says – “Well okay i guess you do! Do you think you need the surgery ??” I was like ?? WTF how the hell do i know – your the friggin doctor. So i said – “well they’re just getting worse so yeah i suppose so” “OKAAAY” she says and what seems reluctantly writes me a blood test form and scribbles on my notes (it looked like spirograph gone wrong). So i leave with a leaflet and the knowledge that in her words “this is a very painful procedure as there are LOTS of nerve ending down there”. Holy Fuck what have i just agreed to ??? I actually felt faint!

I walk to pre-op for bloods and burst into tears – what have i done – in a avalanche of snotty blubber i talk to a nurse I’ve known for 30 seconds – she takes me into a room and talks me through everything and add’s its that doctors last day. The doc hadn’t mentioned this game-changer – coz now obviously she wasn’t going to do my surgery …now arggggggh!!!! On second thoughts I was actually pleased it wasn’t her.

So I was in hospital Sept to beginning November and i cant remember how i found out but i was taken off the waiting list – so once home i call and I’m put back on.

9 April 2019

I was called in to see the gynecology team for a pre-op – now In true Steph style i well and truly fucked this up. I had in my head that it was in high wycombe hospital so drove almost all the way there, but on the way there I suddenly questioned myself and realised I was miles away from where I needed to be – so bombed it back to Stoke Mandeville Hospital. I was 15 mins late for my appt- I did get a bit of a telling off but it all worked out –

It was the usual medical history and medications and what i was having done Rectocyle and cystocele repair and possible hysterectomy depending how prolapsed it is – I  tell her id be quite happy to have the hysterectomy as it means i wouldn’t have to have a second surgery – if its needed in the future and no more periods would be a billy bonus!
I tell her it needs to before the end of may OR after 14th August as i have a amazing family holiday with my parents coming up and i want to be able to enjoy it rather than be in post surgery pain – she was super understanding. She was so nice he even gave me a hug when she sent me off for my bloods and and a heart tracing.

I had my bloods done with the vampires and they got it first time which is amazing as I’m used to 6 attempts being the norm – but on the way to the hear tracing unbeknownst to me it kept bleeding and it was all down my arm and my stick and i developed a weird blood blister anyways i survived lol.

13th May 2019 7.00 am

This is my surgery date – I’m looking forward to it being over but I’m also mega gutted as it will be a hurdle when it comes to the strengthening i have been working on from the program – so I’m somewhat torn.

I’m now in prep mode – in my craziness I’ve decided i need to loose as much weight as possible before the surgery – 6lb gone already so that’s a great start. I’m going to have to reach out to the mum’s at school and neighbors to help with getting daisy to and from school. Maybe i should kind of do a rota as not to take the mic and rely on one person too much? oh i don’t know.

One things for sure I will be practicing mindfulness with each step.

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

mycancerandme

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

mycancerandme

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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Scan done – just waiting for results !

mycancerandme

So yesterday i had my scan, it was at high Wycombe hospital. the night before i was struggling with feeling stressed and found myself frantically cleaning  which id a default i go to when I’m feeling stressed and over whelmed, its a distraction techniques as I’m obviously worried for the result. Its not helped that its coming up to the anniversary of a fellow head and neck patients deaths, now don’t get me wrong i’m not freaking out i’m just finding that i’m thinking of all scenarios good and bad which, must be pretty common in situations like this right??  Anyway i was up till gone 3 so i was knackered but i got there in my new car (more about that soon).

 

So i managed to find the hospital pretty easily, from the outside it looked like a very old concreted office block (the bit i went into anyways ) but, it was actually a really nice looking hospital once you get inside and it was relatively easy to find. i was seen on time which was amazing ! I then had to have a cannula  inserted and as you all know i don’t have any good veins they are all shot to shit, but we managed to get one, we needed one because it wasn’t a “normal” MRI, by that i mean that there’s a certain way that head and neck MRI’s are done here is a picture –

index

as you can see you have a cage around your head and face and it can be very claustrophobic and my god is it loud ! For my scan I had an injection a dye into my veins and then redid some of the scan, I’m not 100% sure why they did this but who am i to argue!

Once finished i was taken to a nurses room for my cannula to be removed and so i could pop my necklaces back on etc and the radiographer that took the cannula was only one of the ladies from my British sign language course!! how cool is that ! she actually the sweetest person and so kind, it was so nice to see a friendly face.

I have mentioned it before haven’t I ?? I’m doing – or should that be redoing my BSL (British sign language )level 1  course at college one evening a week. I’m actually already qualified but that was 20years ago and i can barely remember a thing. This time round we have THE best tutor, M, she is mad as a box of frogs but very very good at what she does and teaches so well. With sign language being such a visual language it can be a bit daunting and can make you feel a bit daft at times ie “make this face with this hand movements” to mean X you have to let go and just go for it, like this. The group are all fantastic seriously nice and such diversity, all with one goal its very special and it has “forced” me out of the house and meeting other people which i have mentioned before is something i struggle with. anyways ive just been invited for a cuppa with a neighbor so i will go now and i will update as soon as i have some news

 

 

Just one last thought – MR F’s next clinic is the 24th of this month and i will be booked into see him then but if its not good news he will want to see me sooner, so no news is good news right?? well that’s there I’m stood on this one.

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Meeting my new head and neck surgeon, nerve wracking doesn’t come close! & I have a lump in my neck

mycancerandme

Well as you all know I now live in Aylesbury area and getting to see Mr Moss is a nightmare its 2 plus hours and with my travel sickness, which is now so severe I have to carry sick bags at all times and take 2 different ant sickness meds – which sometimes work but not all the time – quite frankly I have traveling now – still do it when I need to obviously but it sucks !

so this means I haven’t seen Mr moss since the end of September I think it was, and given I was supposed to be seeing him every 6 to 8 weeks I was majorly over due – I was battling to see someone locally and was getting nowhere in the end I called Macmillan and my old macmillan nurse Lesley and I called PALS at kings lynn hospital – I was starting to panic I was having new symptoms and I have found a lump – its been there since early December and hasn’t changed when I was on antibiotics etc so not just a gland up (like you get with a cold) so anyways – im not sure which one of the avenues worked but I got an appointment 24th March !!!!! NO WAY was that okay, to be honest I cant remember who I called, probably the same people again as I was starting to fell completely at sea without a paddle ! long story short – whilst I was a inpatient I was visited by my new Head and neck specialist nurse called NW and from that I was called by Mr F’s secretary and my appo9ntment was on Friday just gone 27/01/2017.

So I had to get a taxi there as G was in a meeting and it was too soon for me to be driving especially as I was in a tizwas and stressed. it was at Amersham hospital – a lovely little place but very hard to navigate. I got there and promptly asked for a sick bowl as the nerves hit !!!

 

I went in and he was not what I was expecting – not that I know what I was expecting – I think I was dreading having someone who wasn’t MR moss I was expecting Mr Moss’ opposite which simply didn’t happen. I was greeted by NW and Mr F was engaging and interested in what I was saying and listened – he then asked if I had any concerns – I mentioned that the right side of my neck was majorly misbehaving and at times it would go into full spasm which left me look like my ear and shoulder were glues together and my face looked as if I had bells palsy (due to the arm tongue being attached to muscles in neck ) and I said this only happens if I’m sat looking to my left (sort of how I was sat at the time ….(watch this space). I then went on to mention the lump in my neck – saying that G could feel it too so I wasn’t imagining it (coving my crazy ass), next came the examination first external – he firstly looked then felt my neck face and shoulder area it was ok not too painful only a few winces, then he put on his head lamp thingy with magnifying lenses (he did look a bit daft but needs must), and he examined my mouth inside and other than 2 area of dentistry needed he was happy.

BUT the lump he could feel it too – he agreed it was there and had asked for a urgent i.e. within 2 weeks MRI and ultrasound of head and neck to see what’s going on, he did try and reassure me that whist the people booking it may sound pushy to get it done and said  it was just to be sure and not to panic etc., that was when I decided to demonstrate the neck spasm for him !! my god I looked sexy I was practically dribbling – but you know what he was amazing he helped it pass quickly and had given me some medication to help stop them happening – he did mention botox but also said something regarding it may not be possible but by then I was a bit distracted by thoughts of the lump. MR F was great and I instantly felt as ease in his presence, he will never replace Mr Moss but he is great so far!

 

So here we are playing the waiting game! Is the lump something sinister or just a lump ??

 

 

Jan 2017

Mummy blog – because what ever I go through so do they

mycancerandme

well as title says really? and I know its not just the kids it G as well.

When I’m in hospital or unwell it effects the whole house which is one of the many reason I hate being in hospital, I can see the effect it is having and yet am powerless to help. There is the emotional side the practical side and the financial side (drinks snacks and dreaded parking/petrol etc.)

D is now 5 but is very much a mummy’s girl at heart although she wraps daddy round her little finger!  and gets away with murder when he’s on duty lol and K is 11, which is a funny age as he’s entering puberty so has all these emotions and has no idea how to handle them – (although now I’ve typed that it sounds like something someone would use to describe all men lol).

We have found that the kids find quick visits easier to deal with, so we manufacture scenarios where they will pop and see mum on the way to, or from X.  This means they don’t get bored and or upset and its nice and upbeat and they can perhaps come twice in a day even if for only 20 minutes at a time set up . Also with D being so active she simply can’t stay still enough and for some reason she is ALWAYS hot in hospitals (perhaps a bit stressed) and a 5 when your hot you take clothes off, which obviously isn’t ideal lol ! !!

K on the other hand goes really quite and doesn’t really know how to handle it as he wants to help but knows he’s out of his depth. Oh that reminds me we were referred to a young carers group and we had a meeting with someone before Christmas and he’s been accepted and this will give him a great place to meet like minded kids who understand what its like to have a mum with additional needs or disability’s or illness’s, they have a youth club and activities. also we have signed him up for scouts – and as long as we can sort out some transport home for him that should be great too (its at the same time as my college course so I will have the car)

That reminds me I taught the kids to sign a song for Christmas and they performed it for Christmas assembly at school and here is a little video if Daisy practicing before the event and here’s a picture of us after we did it with our Head Teachers award stickers

daisykieran-and-mummy

I am so proud of my children – Christ they aren’t perfect but neither am I and who wans robots – they are kind and caring and are fantastic to be around and regardless of my tubes scars and all that goes with it they love me and support me in their own way.

one last thing I wanted to share was this really cool mummy cheat – you know what its like naming and labelling kids school uniform its a bloody nightmare right? WRONG !!!! I have found a company who not only deliver super super quick but they also have they best products

these name tags are amazing you can attach them to everything from shoes to swim towels and school bags even inside uniform and they wash and wash and wash, then there’s the name stickers and again theses wash and wash and wash – D actually outgrew something before the sticker faded !! They also have a ink stamp so you can just stamp your child’s name on their uniform – no sewing or ironing on labels (they never stayed on anyways. I think these are so so good and as a mum who has to think about what energy I have and how to use it on bad days using a stamp rather than having to fiddle and sew etc. is perfect – its literally the perfect product (no I haven’t been paid to say this !) oh and I even use the stamp on husbands uniform as its just a surname !

Here is a link to the website and Facebook

https://www.facebook.com/nametags4u/ and https://www.nametags4u.co.uk/

Anyways its nearly midnight so I will schedule thus to post in the morning and I will update about my MaxFax appointment tomorrow xx

lots of love and thank you to those who follow

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Not the best start to the year,onward and upwards -I say

mycancerandme

Well 2017 thus far has been a bit of a bugger ! and hasn’t gone quite to plan

I think I got up to about the 11th in my last post – well I ended up being blue lighted back to hospital. I had attended the Medical centre near me, who, incidentally are simply fabulous, even the receptionist is such a lovely lady H her name is and she just gorgeous and lovely  (apologies if that upsets but we have had some right doozies of doctors receptionists in the past),   I was booked in as a emergency patient and saw the big boss doc (the one who’s car parking space is next to the very narrow disabled space, its so nerve wracking every time I get in and out of the car, I’m worried that I might accidently bash his very expensive Jag when getting out- but so far so good). I went into see the doc who had a look through my records so had a good idea of why I was there, I had a v high temp again and my belly was HUGE, I’m told I passed out in his room as well, but I don’t recall this, so that was that back to hospital.

Once I got to the hospital it was clear I needed IV antibiotics AGAIN and TPN and I would also need a PIC line – its like a cannula but its 40cm long as it goes into the top of the arm and follows they vain all the way to a big artery at the top of the heart .

Here is some information from the PINNT website, they offer great support and information for those with artificial feeding issues etc.

What is Parenteral Nutrition?
Parenteral Nutrition (PN) is a means of supplying your body with nutrients and hydration which bypasses the digestive system. This is achieved through the insertion of a catheter directly into the bloodstream, through which a feed that is specific to your needs is administered. This is commonly referred to as Total Parenteral Nutrition (TPN) or HPN.
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What do the letters TPN mean?
TPN is a common abbreviation for TOTAL PARENTERAL NUTRITION. This literally means to eat (-enteral) through the vein (par-). However the terms PN (Parenteral Nutrition), HPN (Home Parenteral Nutrition) and TPN are often used interchangeably.
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How will the nutrition enter my veins?
A very fine soft tube known as a ‘catheter’ is inserted under the skin of your chest wall into a large vein that leads to your heart. A local anaesthetic is given beforehand to minimise any discomfort. A mild sedative may also be given while your catheter is being inserted. The procedure is normally done under Xray guidance. Once the correct position of the tip of the catheter is confirmed it can be connected to a container of PN fluid using a giving set.
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Will PN contain everything I need?
Your doctor and the nutrition team will have calculated the amount of nutrients you require in your PN to keep your body well nourished. This is done by making measurements of your weight, height and by blood tests and urine collections. Changes may be made to your feed to meet your on-going needs. Due to PN being prescribed on an individual basis, some people may make additions to their PN, if this is necessary you will be taught how and when to do this.
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When will I be fed?
Most people on PN feed whilst they are asleep however it is well documented that the infusion time often extends beyond time spent asleep. You will determine how best to fit in the time you require in order to complete your infusion time with your lifestyle. During the night sleep patterns may be disturbed due to necessary visits to the toilet. Many people find they adjust to this over time but people reported sometimes feeling tired depending on the number of times they need to get up. Feeding as much overnight allows freedom during the day, evening or morning. Each person’s infusion time will be agreed in line with your personal needs. New patients may be given a set time with this being reduced over time.
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Will I be confined to bed or at home?
HPN should not be restricted to lying in bed or staying at home unless that is your choice or is necessary for your individual needs. Portable feeding pumps have made it easier to be mobile whilst receiving your feed. Not all patients want to use a portable pump but improved mobility can be achieved with smaller drip stands for use around the home.
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How long will I need to be on PN?
Some patients will require PN for only a short time, such as to permit the digestive system to rest following surgery or illness or for a variety of reasons. For others they will require PN for the rest of their lives. If a specific condition improves then PN can be reduced or in some cases patients may be switched to enteral feeding depending on their specific medical needs.
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Will I be able to eat and drink?
This will vary according to your condition. Your doctor may suggest that you eat and drink as well as receiving HPN. In fact you may wish to continue eating and drinking on a social basis, which even if your digestive system is unable to absorb the nutrition may help you to feel included in social activities. Your doctor will advise you whether you are able to do this. This is one aspect that may change from time to time depending on your personal needs. If you are constantly thirsty you should contact your doctor or nurse and oral fluids will not replenish the thirst and may actually be detrimental to you. There are some oral mixtures for patients who want and need to drink which contain sugars and salts, these may be suggested on an individual basis.
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How will PN affect me on a day to day basis?
This will depend on the symptoms of your underlying illness. However many patients say that they feel stronger than they have for some time due to being well nourished and hydrated and therefore more able to cope with life.
Thankfully I was only on this for a short time and I got from it the energy I needed and the hydration I needed to allow my stomach to heal or whatever it needed and we were ready to try and use my RIG PEG again. thankfully it was successful this time (30mls per hour at 1kal per ml )- I am still getting pain – it feels like my actual stomach is bruised and it keeps filling with air – at times I can literally aspirate 100-200 +ml’s of air which is a bit odd.
Whilst in I met 2 really nice nutritionists one was called B and the other was called L both of which you just know they know their stuff and more importantly they clearly give a fuck about their patients and are not mechanical like the doctors can be – anyways L mentioned that perhaps I should be looking at my EDS (ehlers Danlos syndrome) as a reason for these feeding issues and it is a condition which can and does effect every single part of the body. so that’s something I will be looking into at some point.
Also whilst I was in I made contact with my new specialist Head and neck cancer Macmillan nurse NW and she was also great and gets it  for example she noticed before I even said anything that I was struggling to face her straight on as my neck was playing silly buggers! she also made me an urgent appointment to see Mr Fasanmade as I haven’t had an appointment since I moved here and I have a few new things cropped up regarding the cancer/cancer treatment side of things.
I mentioned the neck issues well at times these are pretty severe, they range of a tired ache as if my head is waaay to heavy for my neck, to muscle aches that male my right fingers (think its the pinkie and ring finger) tingle, although I still have movement and strength then at its worst it goes into full spasm and its not pretty my head tilts to the left my mouth is slightly open and my tongue (remembering the right side is just a graft and non functional) gets pulled to the base of the mouth and I’m almost paralysed by this I’m unable to do anything ot talk (well I try but its not understandable) until it passes, which can take up to 20 minutes.
I also have a palpable lump in my neck, we noticed it just before Christmas and have tried not to dwell? fret? panic? about this as we all know it could be nothing but we also know the alternative.
I will update about my appointment later
still smiling as ever