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Physical and psychological effects of Head and neck cancers


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.

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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

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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

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One year since diagnosis, This is an exact copy of my first post


MY FIRST EVER POST

Things were looking up !! then it all went to ……

FEBRUARY 15, 2013 MY CANCER AND ME

Im not sure where to start so i guess i will start with the begining of this year !!!On the 4th Jan 2013 I recall having a huge headache so bad i put D down for her nap early and had a lie down! I thought i was a migraine which was strange as i havent had one of those in years – but hey nothing to worry about ??The next day was my birthday and whilst i felt shocking my head still banging and now half, exactly half of my tounge was numb i just plodded on, by the sunday i knew i had to see a doc and it had to be that day, so off i went to the out of hours service in peterborough and was rather suprised to be seen straight away, but just thought it was a bit of a bonus.I was in there for what felt like ages and she said i think you have had a TIA .. a mini stroke and ordered me to go to PCH (teh local hospital ) I dont think they realised i was driving but anyways i drove there not realising how seriously they were taking things, well not until i was met at the door of AnE by a lady who introduced herself as the “specialist stoke nurse” bloody billiant i thought !! but i also thought TWITS,  im far too young and i have had so much go wrong with my body so far it wont be that or anything serious (doh)

While there i phoned my parents and asked that they come up (25 mins away) as i needed someone to keep an eye on the children while i had scans etc and i didnt want to phone hubby who was on guard duty — they came but called hubby !! I was less than impressed – I mean of course i was going to call him but I didnt want him unnecessarily worried and rushign away from work when my parents in theory could just help out for a while. Well that was my logic ! Anyways they showed up got kids and were asked to leave by a doc as G arrived at around the same time ! (this pissed them off somewhat i think )Anyways the scans were inconclusive and i was told it was probably a TIA and I was reffered to a nuro -In the mean time i really struggled to eat and joked about being on the best diet ever !!! – i had lost over a stone in less than a month !! (although i can afford to loose another 3 before i will worry too mcuh) – also i kept biting my toung and i had a weird bump on my tounge which i thought was fom biting but i goggled it and google diagnosed tounge cancer 50% suvival rate!!! That was it i was convinced I had the nuro appt on the 24th Jan – at that appt i told her i thing i have tounge cancer !! and that i am a smoker so deserve it but didnt want to die until my daughter was old enough to remember me !!She refered me to the head and neck unit at PCH who i saw on the 5/2/13 i was told it was probably nothing just where i had bitten my tounge but the would biopsey !! which they did a few days later !!

I went in on the 13th for my results and knew it was VERY BAD when they insisted G come in with me, I had said no hes fine the kids are on one – they insisted !!!“so you know we took teh biopsy? Well we have had the results and well you thought it was cancer and we have found cancer “my immediate reaction was “GET MY KIDS OUT OF HERE I DO NOT WANT THEM HEARING THIS”THE NEXT 10 MINUTES WAS A BLUR i was given forms leaflets and told its like skin cancer but on the tounge and we wouldnt know more until we had more tests done …THEN THE TWIST !!!!

I hope that by writing this blog I can help others in similar situations take comfort in the fact that they are not alone. Please help me reach more people with my blog by sharing my posts on Twitter and Facebook. If you would like to follow my story, please sign up to the mailing list so that you can be notified as my blog is updated. Should you wish to get in touch please feel free to use the ‘Contact Me’ page to fill in your details and I will respond to you as soon I am able. Thank you, Stephanie x

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Im back !


Its been a long old time since I last blogged this is mainly down to feeling thoroughly rubbish – which I more recently I found out was due to having an infection.

A week ago Friday I was rushed into hospital with a temp of 40.6 and I was totally out of it ! On arrival at the hospital I had a rather batty nurse – she was lovely and looked after me very well- initially the  doctors suspected I had a chest infection – so I was sent for a chest x ray and ten moved to ward B16 the respiratory ward – i was given my own room too, most probably due to the d n v but either way it was a bonus. I has various blood tests which showed i had a raging infection but thy dont show the location either so – i was having IV anti-biotics 4 times a day as well as my usual cocktail, although i had my syringe pump removed and now i just have cyclazine to use as and when – which is a much better solution I think.

 

One night i was happily watching Eastenders and i hear mumbling… i turn around and see a old lady with long grey hair and a zimmer frame looking at me, I smile out of politeness ….. she turns her zimmer and heads her way in to my room still mumbling and grumbling . I press the nurse call button….. she sits in the bed side chair “where is he” she says  i asked the obvious”who” she replies  “da” she replies i told her he wasnt here, and given she was about 90 i did wonder. Eventually the nurses came and ushered her back to bed.

Each day I was promised the gastro doctor would come and see me for both the D n V and to rule out the infection being appendix or bowel etc …. eventually turned up and was terrible, “so you have cancer” was one of his sentances. Anyways he wants to see me as an out patient.

All throughout this i was struggling with seriously low blood pressure 75/48 and alike which was and is making me feel all wooshy headed and collapse. One time was a corker i was on my way back from the loo and my head was spinning and i just went slap straight onto the floor – i had to call for the nurses to help, including a big chap, whos first words were, maybe next time we can meet over a drink lol … they helped me up and down i went with a bang albeit slighly ore controlled this time.

 

The conclusion of this  week stay in hospital….

infection of unknown location now gone

Low BP – ignore and it will go away

D n V  -ignore it and it will go away

 

 

So i am now using the wheelchair much much more incase i fall. its extreemly frustrating – im keeping my fluids up as im told that my help.

 

But Im home and i missed my little people loads D is growingup loads and wants to be so much like mummy and K who is nearly 8 has hit teenager – and is a lot of fun. G has done a fantastic job of keeping the house going –  i just wish i could help more.

 

Im smiling because of my wonderful hubby and kids

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Still smiling – but with help (arm pic)


It seems like ages since I have updates – I actually think its 4 days which I guess in blog terns is quite a lot. Truth be told I have mostly slept since my last blog.

I mean that literally all I seem to do is sleep, one day I went for a nap at 1am and woke up at 4am .. talk about sleeping your life away…

So the syringe driver that I went home with si working well I haven’t been sick once (touches wood), I developed a lovely allergy to the dressings

, but thankjfully the district nurses had various ones to try. The district nurses have been amazing – I have known some of them since October with my bback so its lovley to see them, yjeu klnow the kids they know the dogs and most importantly they know me and know I look when I am ok. They currently come out every day and refill my syringe driver and whilst they are there every other day they change the dressings on my arm, which incidently is looking fanbloodytastic its amazing here is a pic…

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I had the doc round the other day, my GP to see how I was and stuff – the mutual decision was made to start happy pills as I have emotionally been struggling, so rather than having them for depression per say, its situational at the moment. But who knows – I do have a history of depression, from regular depression to post natal. We are just waiting for the medication in liquid form so it can go down the peg.

Talking of the PEG im still 99.9% reliant on the peg now – I am trying things – the other day I tried a cuppa soup I managed a few tea spoons of that and a tiny bit of mega soggy bread ! and I have had ice cream a table spoon at a time. I am getting in creasingly frustrated wit this – I have time that my swallow just doesn’t work – the mechanism just doest work – I have time where I choke and tiem where the pain is simply too much… and that’s all just with water. I try to taste food from g’s plate and its like I have forgotten what to do with it. But its not likr I can taste it anyways….

I have found myself making goals for the future some of which may sound small or pointless but for me atm they seem huge

MY GOALS

• Eat Christmas Dinner

• Go On Holiday 2014 (pennies permitting)

• Not be afraid of eating to drinking in front of people

• Not be so self-conscious of my facial/ mouth problems

• Make my sewing our second income rather than a hobby ..

• Be a stronger person

Now its time to go back to bed –

still smiling xx

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As weak as a kitten…


Well friday, after seeing the palliative care doctor (not end if life, but symptom control), who added as drug to my syringe driver and gave me the ok to go home.

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This is Sarah the Dr  I saw and she was THE kindest doctor, she was amazing and I even loved her dress (it was from … Pepper Berry and yes i asked lol)

I can honestly say she was the most supportive doc i have ever seen – she took on board your concerns and made sure you were feeling ok about the decisions which were being made – which inevitably would affect me.

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Just before i left i spotted this to, a LEAF  – i asked what it meant …. I was told by an amazing health care assistant who has helped me loads (pic below) thats they place leaf pictures above the beds of the patients who are at risk of falls’s. I thought it was great.

 

Especially as i did have a fall whilst i was in hospital and didnt want to shout about it ..

imageThis is another amazing member of staff – she never stoppped working and was just so so helpful and lovley .

 

I got home via hospital transport and i will admit i found it bloody hard work – i was so bloody tired and jiggling round didnt help, I got home to discover that the syringe driver (as per video) had come out so we had to call out the district nurse!

 

The next day, saturday,  my aunty,Uncle ands Nannan came round it was great to see them and the kids had a blast – I love that my littler miss “i dont like people i dont know reallly well” loves her great nannanand great aunty and uncle so so much

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imagemummy found the energy to do our first plat

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We then went off to the hospital to collect this … and for a few appointments – i will update appts later as i am soooo tired