Latest blog

Uncategorized

Portugal Holiday – the ups and downs

mycancerandme

Hi guys I hope everyone’s doing well. I havent the in the blog-post in quite while, but I really wanted to share some things with you.. some super great and some pretty crappy..I’m writing this from Portugal I’m on holiday with my husband and children as well as my parents and my dad’s mum, my nannan, so the kids great nannan.

This holiday is only been possible thanks to my parents generosity, to say we are grateful is the biggest understatement I don’t even know how to put that into words but we are having the best time.

Before we left…

If you have medical needs, like me there is quite a lot to be organised before you go away, for example your medication you need to make sure you have enough of everything and a medical letter to confirm you are prescribed them, especially important if you have stronger medications as some in countrys it may be a banned substance. (I think Turkey has a ban Codeine banned for example).

I’m very lucky that I have a awesome medical team at my doctors surgery, and a wonderful GP who helped me prepare for my holiday.

So we had 7 day holiday booked so I needed 7 days worth of all my meds, but my doctor said it was sensible/ advisable to take an additional 7 days just in case of delays or other problems. (Similar advice can be found on the Pinnt website too.) That in itself could be quite a lot to organize for most, but if you have liquid medications then the physical size and weight of them makes it difficult. G was great and helped me work out how much we needed of each medication for example

Senna I take that twice a day 20ml each time.

So…. 20ml x 7 = 140ml PLUS 140ml = 280ml

We did this for all of my medications and gave the numbers to my doctor who wrote a fantastic letter explaining everything, including dosges etc and very importantly that I would need to keep all of the medications on my person at all times. This is for a few reasons, firstly if I have it, it cannot end up lost luggage, or stolen. Secondly incase I need to take any meds especially if there is a delay, you may have seen the on the news the guy who had Parkinson’s and was delayed without medication LINK here .  

As My two of my medications control drugs one of them is sort of in that category (pregabalin), nothing we cant handle though.

Then we have my nutritional supplies this is for me ensure compact, flexitainers (empty bottles for pump), the tubing known as giving sets) and syringes. Again we did the maths and my GP added this to my letter. This didnt need to be kept with me but would most definitely use up my baggage allowance cause it weighed 17kg. So I spoke to TUI who added additional baggage for me …I will do a video on how to arrange this and special assistance at airports etc.

We arrived in Portugal and wow it is beautiful and the Villa is amazing once we found it..lol a we went the scenic route

Mom and Dad have been great, from making sure there was a downstairs bedroom to making sure beaches are accessible to somebody on crutches, plus finding shade from the sun as it has been an excessive 35° here most days so it’s been bloody hot. To help me cope with this I’ve added electrolytes to my fluids each night (dioralite) when I have my feeding pump running because I’ve been trying to play catch-up. I don’t reply it’s been bloody hard. 

I have pushed myself each day but have desperately tried not to let it impact on the next day – and to be honest I have done pretty well. Food wise I have tried to take part in meal times but have found it pretty hard I’ve ordered children meals and picked at that, so that I looked and felt part of the family activities. I’ve also managed to hide my chokes and coughing fits……. I have learnt over time to suppress the choke\panic reflex and I just throat clear if I can or calmly ask G to help … it something I’m actually pretty proud of – the main reason I’ve don’t it is panicking makes the choke worse but also being a mummy I try and not scare the kiddo’s . 

I have slept til 9 or 10 most days and with having the pool here we haven’t had to go out to entertain the children (they’re no allowed to go in the pool without an adult on poolside)

Thursday we had our big trip planned so Wednesday I had extra fluids and feeds overnight and slept in in prep for the big trip. 

Thursday we went on a boat trip to see the Caves and Dolphins (the dolphins were a bit shy),  getting to the marina was a 15 to 20 min taxi ride then there was a bit of a walk to the marina where we had lunch and drinks. I was pretty glad to have a sit down and drink cause it was massively hot – we weren’t due to depart till 4 and had hoped it would be cooler by then …WRONG it was still at least 36 degrees….  but because our party had my nanny who is in the 80s and children (and of course me) we chose a boat that had some shade. 

This is who we went with Ocean eye they were brilliant and we DID see some dolphins .. actually me and Daisy saw them first which was awesome and then standing on the boat (folding on for dear life ) whist it sped over the ocean was such and exhilarating feeling – the wind through my hair – it was AWESOME. 

We got off the boat and found a taxi I WAS EXHAUSTED…. seriously knackered – my speech was shit and I was nodding off at a seconds notice, we arrived at the restaurant and I did my usual order a children’s item, and wow it went tits up!!!! 

Almost immediately I choked on the food, and spat it out, and had some drink.Despertaly thing to hide it as a member of our party is *grossed out by my peg and all things related ) I then tried again and this time I couldn’t trigger a swallow so I was doing my chin tucks and NOTHING – I had to spit it out. But in my desperation to be normal I forced some food down and BANG I had food stuck in my throat- cue coughing fit – I did keep calm it enough to walk outside and have a further coughing fit  followed by a visit to the toilets to vomit – I had managed a grand sum of nothing. and was left feeling totally crap and embarrassed (yes I know they’re family and probably don’t care – but I DO… ). The NEED  to look and feel normal is still as strong as it was 6 years ago – I don’t think it will ever leave. 

We came home and the pain of the day hit me and it was a 9 out of 10 – so bad that I needed G to help me go to the bathroom and wash up before bed.  Its not often that I need G to help me with EVERYTHING down to my underwear. I then needed putting to bed, and we made a makeshift fixed sleep position with a duvet from the cupboard and various pillows and cushions. 

I had my max meds including the liquid one PLUS we used the lidnocane patch that we purchased over here in Portugal (I will post about these seperatly soon). 

I woke several time cause of pain and took today very slowly – that said I would 100% do it again – I think sometime we need to take the hit … I  know its coming but we don’t let it stop me …. some might say it’s daft to do it but you know my mantra “fuckit”.

any who this is my penultimate night here and I have had several vodka and cokes so its bedtime. 

sending love to all who’ve managed to read this to the end you are amazing and Iove you lots.. keep fighting whether its cancer, a long term illness or another battle  … you are strong. 

feel free to message me anytime 

mrswiggy.sw@gmail.com

Advertisements
Uncategorized

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.

Uncategorized

Balanced life program Nuffield orthopedic hospital Oxford April 2019

mycancerandme

I really hoped that I was going to be able to blog everyday and tell you everything,  but to be honest there wasn’t that much to say each day as it’s an cumulative course. 

That’s not saying we didn’t do much,  as we really did a lot, were either doing or learning.

I will be adding smaller posts with some information of things i found helpful or enjoyed 

We start every morning saying  telling the physio how we are, a bit like circle time at school. What i loved is the honestly of the group, some might say that they had a great evening and that they had practised being mindful, and others would say how crap it was because of the pain they were in and some might say “I managed to achieve some goals” (this word will be changed to values from now on and i will explain why later) and some says they try to achieve goals and failed. But it’s OKAY, we all get it, we understand pain, tiredness and brain fog.

Spent a lot of time with our first physio *A* and she’s so lovely so understanding,  I’ve never known physio’s so understanding of pain and limitations but the same time she finds things that we could do whether it be literally one minute on a sit-down bicycle or it might be that we can do some arm stretches but we still achieving  things that we maybe didn’t think we could do or that we haven’t then before. She was also very aware of the payback chronic pain sufferers get, for example my trip to London, i was in bed for 3 days after beyond exhausted and in lots of pain.

I think the main thing i’ve got from it is this, is  honesty and understanding, saying “yes i know this is shit, but there are good bits and you can capitalise on these” and learning to say “i need to rest right now” or “no i cant come out tonight” without the terrible guilt that all of us are plagued with.

It helps you be kind to yourself to acknowledge the inner bitch saying bad things (eg you cant do that like other mums or your house is shit or you need to do more ) and choose whether to listen to her, to acknowledge the pain you have (aimed at chronic pain sufferers not acute pain) and rather than fight against it – (for example, I fight my pain —its fine i can do it … i power through but i then crash) – but it teaches to just slow down – This is not to “give in” to pain, more,  lets look at it what can i do – what bits might i need assistance (and not to feel like shit for asking for help), because at the end of the day those around us love us and are probably chomping at the bitt to help, its taking control of our own mind. 

I think i’m going to do a full post of this to give it the space it needs for a good explanation – 

20190418_110232-1.jpg

 

I spent time in the gym,  the actual gym!!!!  and I have used equipment,  ok,  it was one minute on the recumbent bicycle and about 30 seconds and I could balance board but that’s the most i have done in a gym for 15 years.  I did this EVERYDAY and i could see my strength improving, may have been subtle but it was there.

20190403_130639.jpg

20190403_130621.jpg 20190403_130511.jpg

We’ve been doing is hydrotherapy twice a week and this is amazing with the pool is fantastic  it’s so warm, the changing area was warm and there were chairs in the changing cubicles. A game changer there are real steps to get into the pool rather than those horrible ladders. The pool is not very deep, at its deepest it’s probably at my chest. Initially we started with guided sessions ie blue eyes or A lead telling us what we should be doing – things like  sitting on the shelf bit and doing bicycle legs, exercises or  doing stretches.

Every time we did stretches the whole group would laugh so much , for example we held onto the bar at the side of the pool all looking the same way (think ballet class) and he might say lift you leg out to the side of your body – and me being a  bendy bugger (cheers eds) I would have my size 7 sticking out of the water whilst the others were miles away from the surface and i felt no stretch lol. 

We did very simple  exercises, it  initially seemed easy but my cockyness was short lived. We were stood in the water and we were swishing Arms forward and back (each going opposite direction), well that was easy, until you realise you need to use your core to stop you twisting and turning , this we the first time i realised how bad my core was, i couldn’t stand still i was like a rag doll. That said it was great  I was weightless I felt strong, the sessions were only ever 20-25 minutes and initially i thought i wanted more,  but i soon realised how exhausted i was after hydro. It was like I had run a marathon it was overwhelming tiredness because we had  worked hard but we had the support of the water so it didn’t seem so much at the time – i wasn’t alone with this we had some nodding off afterwards lol. But again the team were super understanding. 

20190405_123621.jpg

In another session we had to float in a certain way, (we had pool noodles wrapped round our back and our arms resting on them at shoulder height and our legs were bent 45 degrees so nothing was touching the floor) I tried to stabilise myself – ie stay upright by just using our core, no arms or legs. Looking round everyone was staying upright and barely moving, whereas i looked a shark attack , seriously i was all over the place – i face planted countless times i fell sideways and back – it was ridiculous, but my group were great and encouraging and supportive and again the team of physios were great.    

While i remember we did address my non existant core in the gym a bit later on and i was shown the most basic of sit ups – lay down and as if your going to do a sit up prep the muscles or curl body slightly as if your doing a 2 inch sit up, i could do 2 or 3. The second exercise was to get on to all fours and try and defy gravity by pulling belly in – now this one i couldn’t do – i was telling my brain but my body wasn’t fireing –

GRAVITY 1 STEPH 0

 

I will say this course is hard work – i mean mentally and physically and at time emotionally – for example week 2 day 2 – I woke up in my BnB and my back was in spasm (T4-T7 where i had my surgery and i have scar tissue issues) – i couldn’t get dressed and could barely move – – I had to call in and said i couldn’t make it – i felt terrible physically but CHOSE not to feel bad about not going – ie I’ve let them down / I’m missing out / what will they think of me etc – I made the decision to say FUCK IT – whats the worst that could happen – feeling this way will in no way help my day – and would make me feel terrible – so i chose to watch crap TV tale meds and chill – Okay this is my take on mindfulness but it bloody worked – yes my pain was still there but that was it. 

Uncategorized

Balanced Life Program Nuffield Orthopaedic Hospital for patients with chronic pain.

mycancerandme

Balance Life Programme – Nuffield Orthopaedic Hospital Oxford- this is a 3 week course – you attend Wednesday, Thursday and Fridays 

 

 *Balanced life programme* an intensive physiotherapy, hydrotherapy and psychology course. Aimed at helping patients maximise what they can do within their capabilities and disability or illness. Due to it being so intensive nature I will be staying in a BnB Wednesday to Friday each week.

I plan to blog my days good and bad to give a real look at the programme.

Wish me luck.

Week One Day One 

This is my honest opinions and view of the course (disclaimer everyone had different opinions and takes different things form the course my opinions are simply that – opinions)

Getting there…. We live 45mins to an hour away which would make it unmanageable for me so the hospital has an arrangement with a local B n B – The mulberry Guest House – as check in was midday we dropped my bags off. I take my own pillows and then theres all my meds, being liquids there is a lot to carry.

10am Introduction 

We all walk down the ridiculously and ironically long corridor to the physio department where we sit in the waiting room and make small talk, we are then shown don’t to the
course room, where we find a semicircle of chair to sit on, the physio explains that we can sit / stand / move which ever works.

20190403_130834

We all inevitably look at each other sussing each other out – theres the quiet ones – the bloke who makes the dry jokes (we get on funnily enough),  the massively positive people and those who are there not hoping for much ….me?  I’m not sure where I am at this stage.

The first session is general intros etc and most importantly our coffee order is taken!
10.45-11.15 coffee break.

11.15 – Introduction to exercise

(we moved to some chair in the gym)– we talk about expectations, thoughts and feeling relating to starting exercise in the gym. The talk brings up words like “worry/fear/anxiety etc” and one or two say determined and excited – but the overwhelming wave is anxiety / fear of pain related.

We are then asked to do some leg extensions (sitting in chair – feet on the floor – bring
leg up to straight and back down). Well this I CAN do.

The physio then announces we have done some exercise in the gym and we all survived! she wasn’t wrong … The next task was to see how many times we could do Sit- stands (i.e. stand up from chair no hands), she says if need be we can use a plinth …. I sit there thinking like THE stupidest person on the planet – what the fek is a plinth and do I need one ????? so I ask.. apparently, it’s a bed …in physio talk….
Well of course I can?… stand up and sit down … easy peezy …..
                                                                                    NOPE
not a single one, I try … and try again…. And start giggling like a right twit, making grunting noises like a hippo birthing a beachball! Turns out I need a fekking PLINTH after all.

12.00 to 12.30 Introduction to Gym

We are shown how to use the equipment including the recumbent
bicycle the stretchy bands and the wobble boards. Wobble boards – I didn’t have high hopes for this to start with but as I’m walking over the male physio (Mr Blue eyes) says,  “lets go for the easy one” GREAT START lol. So he shows me the board, it’s a square board that can either wobble left and right or back to front depending on the orientation.

 

We start from left to right and what a EPIC fail….. oh my god – seriously it was funny how shit I was – my misfiring muscles in the legs caused me to have, what looked like seizure like activity in my legs – if I wasn’t holding on to the bars for dear life I would have been on my arse lol – That said when we turned it to rock backwards and forwards it was much easier and even appeared in control of the situation. Both of these probably took less than 5 minutes total yet once finished my legs were like jelly – I was exhausted – mentally I found this quite hard to process as ..come on 5 minutes of standing up !! and I was done …. But hey it’s a baby step right??

20190403_13063920190403_13063020190403_130621

We finish off with a meditation – mindfulness meditation which I think I will talk about next time – its not something that I ever rated or even considered to be anything other than baloney, so this has its own challenges. BUT I am trying to be open minded and give this a real go – so here goes nothing. 

DAY ONE DONE

I get the buss back to my BnB where the lovely owners have put my bags in my
room, I get in – video call the kids and G, set up the iPad to watch something then wake up at 9pm….. so
I have some meds and a yoghurt and go to bed ready for day 2 !

Uncategorized

Physical and psychological effects of Head and neck cancers

mycancerandme

Your face

Facial palsy from tongue and cancer.
My initial facial palsy
Face after cancer. Head and neck cancer. Tongue Cancer.

Your face is who you are – and if this changes, which is often the case in head and neck cancers,  you’re left with not feeling like yourself – you feel unable to identify with the person looking back at you from the mirror. For me the worst was that I felt people saw me differently. I knew that when i looked in the mirror that my face was *wonky* and even once this had gone (85% gone) I feel sure that people can see this. I also have lymphoedema in my face, again quite common in H&N cancers, it is where the lymphatic system cannot drain effectively and it causes swelling on the side of the face and neck, it is visible when I am tired, or unwell. That said the lymphodema clinic at Florence Nightingale Hospice were AMAZING and I was taught techniques to help the selling go down, it’s a bit hit and miss but could be worse!

Speech

Speech is a very big part of who you are, its how you introduce yourself how you get across your point of view its how communicate with the world. My speech – I HATE how I sound now- I genuinely loathe my voice and the way I sound, if Im honest some days this consumes me. I used to have “news reader voice” I pronounced every syllable and often got called “posh” and if Im honest I loved it – I had a wicked laugh too. Now I have a much deeper voice that’s gravelly and I loose it often. I also have a speech impediments which means I cannot pronounce “th” or “st” well any t, or s.  I’m aware I sound “not normal” . I’m aware that when I speak my mouth/face doesn’t look like it use to or like others, I see people looking and trying to work out what is going on. I don’t blame them as  I cant say I wouldn’t look if I saw something that was a little bit off and I couldn’t put my finger on what it was. My family and friends say – they don’t notice but I don’t know how …. then theres the people who say “you sounds better/ clearer that ever”  EVERYTIME you see them, even when i know im having a crap speevh day. Honestly it just feels demeaning, at pat on the head!!! well done !!grrrrrrrrr (moving on..). The last thing I want to mention ref speech and voice is *on the phone* first off the automated *please say the name of the person or department you need after the beep* Not once have I gotten through to the right person..they don’t get me, which I wouldn’t mind if there was a *press this for a human* option, but often you have to get it wrong 3 or 4 times before your transferred. Then there’s talking to real people, this drives me equally bonkers some days my speech is so unclear no one understands me (other than G, kids and mum), I actually get quite angry about it, probably frustration and resentment but I’m working on it.

Eating and swallowing

Eating for me is a nightmare if im honest – there are so many things that can and do go wrong (things you may never have considered), the best way to describe this to someone whos had no issues with swallowing in foods is that there are about 7 parts to my eating issues

  1. I haven’t many teeth left and what I do have are crumbling
  2. I have limited ability to move things from to left to right or to the back of my mouth pre-swallow
  3. Swallowing…its so hard for me to do – the only way I can make it relatable to anyone would be to ask you to try something, stick your tongue out bite it gently (just enough to secure whilst doing it swallow (yep you will stupid but it will give you snippet of what its like). I also randomly loose my swallow.
  4. Asperating, as I have half my tongue removed the back bit that essentially closes/ protects the wind/food pipe doesn’t exist therefore food/ fluids (and a dental cap that time the dentist dropped that time) can accidently swallow (not so bad) or asperate (ie food or drink/spit goes into the lungs or windpipes – this not so good and had landed me in hospital very poorly a few times)
  5. Choking this is very common and can  literally be daily, and the frequency doesn’t  take away the real and ever present danger, it scares that crap out of me and G. G is now proficient in back slaps to dislodge the thing that’s stuck.
  6. food also goes UP rather than down, so up my nose. It’s a horrible sensation, occasionally it will *fall down* into throat (got to be careful I don’t asperate it) or I spend 5 minutes blowing my nose till it comes flying out….. I’m just so sexy right ? Lol
  7. Hypersensitivity to flavours, for example a cream of chicken soup… smells amazing… but I end up in the fridge sucking on a bit of cuecumber… it has a minute pinch of pepper. My mouths on fire, tears streaming. I still like to cook when I can, but I cannot taste the food. I’ve cooked ***as my tastebuds only really taste salt (I crave salt) and sweet. So I do it by smell and my previous knowledge. I do get G to taste occasionally but he eats everything and tends to just say *yep, nice* but I need more…. but we make it work.

Eating….its EVERYWHERE …. its first thing, last thing, and everything in between its first dates, it going to the cinema, its lunch hour.
If your left with dysphasia (swallowing issues) you may, like me, have a PEG, a feeding tube permanently to your stomach where you pump or syringe a prescribed gloop, which just looks like odd coloured milk. When you have your feed you don’t get the feeling of satisfaction you do when you finish a meal-, actually all I feel is a bit sick and burpy. Think about how may parts of your day or week invoves food, each one is a reminder to me that I had cancer – its a reminder im different now and I know this is my *new now*(that said I would never suggest anyone change what theyre doing or hide things from me, its just something that I hope in time will diminish. like anything I have good and bad days.)

TMJ and Trimus plus fibrosis

Trimus is essentially jaw pain and reduced jaw opening, this is something that effects me every day, cleaning my teeth is soo painful – I even have a “baby” toothbrush to enable me to reach my back teeth.

TMJ is characterised by pain and dysfunction of the TMJ muscles also so cracking click and clunks – for me trying to eat is very painful and talking can become painful and it can even become a struggle to move my mouth to shape the sounds.
**Radiation damage to the TMJ and contiguous structures causes scarring and fibrosis of the muscles and ligaments leading to gradual reduction in opening post-treatment. Trismus is usually seen as a late effect of radiotherapy due to the relatively slow turnover of the affected cells.**

Now before you go, please know that although I’ve outlined many many issues I’m still happy (most of The time) I’m still smiling and I’m a very proud wife and mummy to my amazing kiddo’s.

Uncategorized

Joining the dots … Ehlers Danlos Syndrome EDS

mycancerandme

Those that have followed me blog will know I have a plethora of health issues from having my pelvis split whilst pregnant with my son, needing surgery to put metal plates in it to pull then back into place, to slow healing from surgeries, bladder issues, prolapses, dislocations and a subarachnoid spinal cyst and that’s not half of it…

Well around June I saw a rheumatologist at the Nuffield orthopaedic hospital regarding the reoccurring sacroiliitis which was made worse by the fact I have excessive movement in the back of my pelvis ie Sacroiliac joints.  He was very thorough and we spoke about the almost daily subluxations and the dislocations and he said what I had “known/suspected for years” that it looks like I had EDS Ehlers Danlos syndrome, (ill explain in a bit) and that he would refer to University College Hospital in central London to see the UK specialist but warned me about the huge lists.

I was surprised how quickly I received a letter; the first letter was simply to say that they had received the referral and that I was on the waiting list to see Dr KazKaz.

Now this was a name I recognised, she was the top of the crop, she was the big cheese BUT on the many support pages on Facebook that I am a member of I had read horror stories about her, that she refused to diagnosed this person who said had EDS severely and that she was …. Well a bit of a bitch (on reflection it was only a couple of people but they had posted a fair few times) anyways I was pretty nervous, what if she was horrible, what if she said it was all in my head and that I was nuts – if that happened what was next …… I stressed quite a bit about this if I’m honest.

My appointment

From memory my appointment was late morning, thankfully G took the day off to come with me and I’m not sure I would have got there without him (I cannot fathom the London underground – it might as well be Swahili) anyway we arrived 10 minutes before my appointment and initially saw the nurse and my BP was sky high, given its usually in my boots she told me to take a seat, relax and try to calm down after navigating the tube and she redid it and it had returned to normal.

Doc Kazkaz calls me in, and straight away shakes my hand and greets me like a friend. She reads what she has on her screen and checks all is correct, she then asks me about my pain and I explain I pretty much have pain in all joints apart of elbows ankles wrist and fingers, and that I struggle with muscle spasms often.  She asks about my normal blood pressure, which is low at 100/58, she asks if I get kiddy when I stand up quickly, I tell her I quite often pass out when I do it too quickly, I then tell her we discovered in my recent hospital stay that when I’m laying down my pulse is 80, then sitting is 100 to 120 then standing is 150 up to 180…. It does come down a bit if j stay upright but not all the way, she explains that it’s a condition called POTS (Postural tachycardia syndrome). (More info at bottom)

 We then talk about the dislocations and the subluxations (like a half dislocation). She then says to strip to pants and bra and asks me to initially stand, and bend forward and put my hands on the floor and then backwards (she tells me to stop when I’m doing it backwards as it was too far for the joint, but I could have bent way more). I then have to walk up and down her room several times, she was looking at my balance and the muscles and most importantly the joints. Then I lay on the exam bed, she closes the curtain half way and starts her exam, looking at all my scar and my skin looking for characteristic scaring or paper thin skin (I will have the info below). She tests my ankles, and finds them very hypermobile, my knees slightly over extend ie bend the wrong way, my hips are massively hypermobile as is my back, my wrists are and I can put my thumb to my wrist, my neck is stiff due to the cancer treatment ..she probably did more but I don’t recall. She explains there’s a new criteria for diagnosing EDS and that I would have just about scraped through the beighton test, but the new criteria is much better and looks at more joints and the whole person.

So I get dressed and she shares her findings, she confirms that I have Ehlers Danlos Syndrome..

EDS has lots of different types 13 I believe, some are very serious and can even be fatal. She believes I have hEDS which is the best type to have (although its not great), BUT due to the fact that I have issue with my veins, (they are hard to find, I’m almost impossible to cannulate and if they manage my vein bursts) and I have a slight leak on one of my heart valves (I had a ultrasound hear scan) and I bruise extremely badly often with no apparent cause and I think there was another thing but I forget. Because of these there is a possibly I have one of the other types of EDS so she has referred me to genetic testing, hEDS cannot currently be proven genetically but the other types can. Should I have one of the others I may need the children testing just in case.

She was so very lovely, really kind and explained everything and nothing like what I was expecting at all, I’m so relieved to have my official diagnosis, there is no cure, or treatment really but it means I have a reason for lots of my problems and most importantly it means its not in my head !!!

What is EDS

The Ehlers-Danlos syndromes (EDS) are a group of thirteen individual genetic conditions, all of which affect the body’s connective tissue. Connective tissue lies between other tissues and organs, keeping these separate whilst connecting them, holding everything in place and providing support, like the mortar between bricks. In EDS, a gene mutation causes a certain kind of connective tissue – the kind will depend on the type of EDS but usually a form of collagen – to be fragile and stretchy. This stretchiness can sometimes be seen in the skin of someone with EDS; individuals with the condition may also be able to extend their joints further than is usual – this is known as being hypermobile, bendy or double-jointed. As collagen is present throughout the body, people with EDS tend to experience a broad range of symptoms, most of them less visible than the skin and joint differences. These are complex syndromes affecting many systems of the body at once, despite this EDS is often an invisible disability. Symptoms commonly include, but are not limited to, long-term pain, chronic fatigue, dizziness, palpitations and digestive disorders. Such problems and their severity vary considerably from person to person, even in the same type of EDS and within the same family. (https://www.ehlers-danlos.org/what-is-eds/)

W

What is POTs
Postural tachycardia syndrome.

Postural tachycardia syndrome (PoTS) is an abnormal increase in heart rate that occurs after sitting up or standing. It typically causes dizziness, fainting and other symptoms.

Pots is the malfunctioning of the part of the nervous system that controls involuntary bodily functions (e.g. breathing, heart rate) is common with hypermobile EDS. Symptoms include fast heart rate coupled with low blood pressure, digestive and bladder problems, and temperature and sweating dysregulation. You can manage the condition by drinking more fluids, improving your cardiovascular fitness, and if your daily function is severely impaired, taking medication.