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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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Half term part 2


So we are at the end of half term, we haven’t done anything too exciting but its been good, well other than THE worst mummy fail ever, essentially I told my 8 year old boy he could not wear deodorant because he hasn’t started his periods, in my defence I meant to say puberty. Then thee was a very very awkward 10 minute conversation about the basics of puberty with my 8 year old. I was expecting him to be traumatised by the conversation, but instead he just said “can I go on my xbox” and off he went happy as larry.

So last week I went to the docs for the results of my Vitamin D blood test results, the doctor who I had never seen before spent ages looking into my thyroid issues and I kept trying to say – I have seen a consultant recently so its ok – but he kept saying hang on a minute – it was so frustrating. Anyway I got my results and my vit d is pretty low nothing to worry about but worth trying to up it . He said that I should try and get something for Holland and Barett, but as I cant swallow, so I found a multi vit “tonic” which can go down my feeding tube and has Vit D in it. I then mentioned my increasing back pain, especially my lower back. He examined my back briefly and said he was going to write to Mr Moss and request a bone scan to check its not related to my cancer. Well that was it the shutters came down – I was pissed off – I couldn’t get away from this bloody cancer I felt penned in. Once I had left I stewed for a while then wrote the Dr a note asking him not to request the scan as I thought it was an over reaction. I don’t know if he took notice.

I wrote this on my facebook page and had lots and lots of comments asking me to have the scan and or to speak to the doctor. So I have made a double apt with a doctor that I have seen before so all should be good.

Today we took the kids to the park, it was great and a friend was there with her hubby and kids, it was a lovely atmosphere and the kids had a ball, unfortunately when we got home D became very hot with a temperature and came out in a rash – so Calpol and brufen and she was doing much better. I’m hoping she’s ok for next week as I have lots of appointments.

Other than that I have been doing ok – my jaw pain has been the same but I have managed porridge most days and manage to drink a whole bottle of chocolate milk today. Also I have left the house a few times without my scarf which is a bit of a milestone for me.

Enough rambling for tonight i’m off to bed.

#still smiling

 

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Recovery? (arm pic but not as gross anymore)


I haven’t blogged for ever and I keep getting asked if I am ok as I haven’t blogged – I am ok – in my own way !

I thought I would start with a quick run down of whats been going on I am seeing Mr Moss 4 weekly and at that appointment I also see speech and language (these are also th people to help with swallow and therefore eating – more about that later on) and I see my nutritionist who wants me to “make up” calories so I have the right amount so I have free reign over ice cream …

 

OK arm pic it looks a bit paler in this picture its more pink in real life – its fully healed and we are using massage to stretch it out as the top bit on the left can get very sore as the skin is so tight. But overall I am pretty happy with how its healed I do still hide it a bit not because anyone has said anything but I just feel more confortable.

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The next few pictures are to show how much weight I have lost .. im now a UK 14/16 and was a UK22,  loosing weight that quickly really messes with your head, you pick up a top size 20 and I go to put it on – it drowns me. I wont need to  shop in Evans ever again, im some ways im more confident with my new body but I most definatly need Gok Wan to get me into some magic knickers – I haven’t got baggy skin or anything its just a mummy tummy after 2 C-section and my pelvic surgery.

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NOw this is a bit of a random picture but I wanted to share a friend of mine is going to make one of these for my son for Christmas, which he is going to love, his aunty JoJo got him the first DVD for his birthday which was 10 days ago, he had a great day he got a BMX scooter, a remote controlled helicopter, £65, 3D bedding!!!! oh and a Darlek  alarm clock which projects the time on the ceiling. Then he went to school hee hee, we then took him to his favourite place to eat out, Harvester, he loves the salad bar, actually so does D. everyone (im not inc) had a great meal and pudding and off we trotted back home for some helicopter fun … it was very funny to watch especially hubby as K expected him to be able to do it straight away and he did not, he was as bad as K but they had a good laugh.

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You might remember me taking a questionnaire about my low moods etc – well I am now on anti depressants and have been for some weeks now and am starting to feel the benefits – I spoke to both my GP and Mr Moss to said its almost unusual for cancer patients / during or after treatment not to become depressed. Weirdly hearing that its normal made it easier to talk about and even put in here.

I had my first “scare” (that should read paranoid crazy lady moment) I hadn’t had a period since May and I started to become aware of this and think of it more as August progressed and I got more worried thinking – has it spread – but I had a clear smear in January, but it could be, what if it is, it could be, you never know omg it is… im going to die .. etc etc. But being the sensible person I am I bottled this up and said nothing to anyone until my amazing health visitor popped over and I turned into a snotty blubbering squeaky voiced mess, she proceeded to get me an appointment the next day I think it was, anyway G came with me as by then I has fessed up my crazy. So I explain it all to the doc as she says you have lost a lot of weight you have been through soo much your body has probably just put it on a back burner for now – she then said but as we have spoken about it it will be here within the week, something no one understands but it happens. We left and 5 days later the doctor was proved right.

 

I guess that’s what I have too look forward to for the next … ever, as you never forget that day you never forget the biopsy or the telling people .. so I think what I am saying is I will always be scared in one way or another that its going to /has come back and it will always have that hold over me.

I know this is turning out to be a long post but I just wanted to update about my eating or lack of, I can manage Weetabix most days – some days it feels to sharp in my mouth and leaves my mouth and tongue so so sore. I have tried lots of other things mash potato different soups and have stolen food off everyone’s plate to try and eat and I haven’t found anything that I can eat without it causing burning pain or making me choke and turn a lovely shade of blue. This is starting to piss me off now as I am fancying food – I see or smell something and want it but I cant…. very frustrating

anyways I need to finish a bit of sewing so I will leave you with a non wonky smile

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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