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Physical and psychological effects of Head and neck cancers
Your face
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
- I haven’t many teeth left and what I do have are crumbling
- I have limited ability to move things from to left to right or to the back of my mouth pre-swallow
- 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.
- 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)
- 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.
- 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
- 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.
Joining the dots … Ehlers Danlos Syndrome EDS
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.
Forget me not?????! Memory problems and more
Over the past year, and especially over the past few months I have been having real issues with my short-term memory. Not just walking into a room and forgetting why I’m there but being told something and immediately forgetting – or ordering the exact same thing on Amazon 3 times in the space of a few days .. THREE gaming headsets for my son – simply because if FORGOT I had ordered it. Not my finest moment.
My very best friend has been in hospital so we chat on the phone most days and via messenger – and there have been countless times that she has said – “I told you yesterday or an hour ago or you told me yesterday or an hour ago. Its so bad that my doctor’s surgery has the receptionist ring me the day of my appointments so that I don’t forget to come again.
Now before anyone says write it on the calendar, and in your phone, I do, I have and G reminds me before work, don’t forget blaa blaa ….. and 20 mins later its gone – and not just I need to concentrate and I will find it – I mean gone gone NOTHING no recollection at all …..its actually quite scary.
Here’s another example – Kieran wanted a friend round and the done thing is the mum’s text or call to make sure its all okay etc – so I had been texting this mum and it was all arranged and a few hours later a lady appeared at my door and there was a boy behind her….”hello?” I had no idea who this woman was or why she might be here, I just looked at her blank faced for what seemed like an age before she said – its so and so, here for Kieran, at which point the penny dropped, I blamed lack of sleep, and made a joke. But if I’m honest I was embarrassed.
I’ve also been exhausted and by this I mean in involuntarily fall asleep at a drop of a hat (something I berate my hubby for doing), I struggle to get up in the morning as if I’ve not slept at all, I then do school run, return home and I’m normally asleep by 10.30, G comes home for lunch and says I’m always very deeply asleep, I then have 5 different alarms to make sure I wake up in time for school run – BUT even then I have slept through a fair few times. Thankfully my 13 year old is there to pick my 7 year old up and the walk home is nice and easy so the kids don’t mind in the slightest. Whereas me, I hate it – I hate the feeling of not having the energy to get up and pee so just holding it for hours on end, I hate putting EVERYTHING off because I know it will exhaust me.
Lets say I go to bed a 8pm on Friday night, if G lets me sleep I will sleep till 4 or 5 Saturday or even later, at which point if I wake I make myself have something to drink and go for a pee and often go back to sleep till Sunday midday so 34 hours from Friday to Sunday and that’s the NORM.
So I spoke to my GP about this Dr Hannah (who is soo nice), G was with me for my first appointment about this and she did this memory test thingi on me and it is done on a score, and I dont recall my score (ironic huh?) but she said that it showed that there may be reason for further investigation –
She suggested some blood tests. A few days later I went to the docs for the blood tests and as per usual they had issues trying to find a vein (I will have a post about this very soon) … they goy half a bottle and said they would send it but I needed to book back in for another nurse to try a few days later …..which I forgot to do.
I then go for my results – only to be told I cant have results with out having had me tests DOH
So we try and get the bloods again- lots of try’s later and the send me off to the hospital to get them done there.
RESULTS Take 2
Back to see Dr Hannah and they are “all over the place”… I have low ferritin and low iron and very low vit D all of which in theory could cause “brain fog” and tiredness and seeing as though I have a full house I’m hopeful that we have found the reason, and a fixable one. AAAnd because its me its never simple, all my medications have to go down the PEG so have to be liquid or crushable (some tablets cannot be crushed (im sure there is a very good reason why not- but tbh I have no idea ) anywho… the doc has had to order in these meds especially as I ma going to have to start on a very high dose of a few of them.
The last time I had iron tablets they gave me a terrible upset stomach and I had to stop and I was given a iron infusion and as I am due to have a few surgeries soon that may be happening this time soon if I cant tolerate them again – but lets wait and see.
One last thing – its might be possible that the memory issues are related to my radiotherapy due to the area of the head/brain that was in the “field” but we are going to look at that as a last resort.
What does this mean? I cannot go there …not again..
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
It’s not always about the patient !
This post isn’t about me it’s about family and how they are affected by my ill health and my hospital stays. It’s something I’ve mentioned but recently the effects have been bad have been BAD.
As you know I’ve just been discharged after being in hospital for eight weeks. My husband has had to keep the house running, the children going and visiting Me AND all my extra washing as well as things I wanted bringing into the hospital.
Now being a military wife some might say well it’s just the same as when the husband or wife go away on tour. That’s just wrong, when a husband or wife goes away for 4 or 6 months we have to juggle the house, children, dogs, and family we do not have the added stress and worry of having a loved one in hospital and the additional stress of visiting , and finding parking, which is damn near impossible as Stoke Mandiville Hospital! He’s had to cope with the children being upset because mummy is sick, the seven-year-old who is waking up in the night because he misses mummy and is scared that something bad is gonna happen . He then has me phoning whingeing saying I’m having a bad day, saying the crazy patient opposite has been literally screaming for ten hours or that the little old lady you really liked had passed away. Venting my frustrations about Doctors or Nurses or that HCA who was making up numbers when taking SATS (yes I reported him).
When you get home I hope everything will go back to normal but it doesn’t, you come home to a seven-year-old who is crying because she wants a cuddle yet she’s sitting on your lap cuddling you. A child who doesn’t trust your home to stay so doesn’t want to be away from you. One who’s regressed so so much your no longer mummy but mumma.
It gets worse!
While is in hospital I was I thought I kept in the loop about D and how she was coping at school which wasn’t well and what was being done about it.
You come home and take over school run because she wants which is fine and I’m quite liking getting back to normal. Your then told by senior member of staff that she is not just been having a bit of a rough time, she’s now the polar opposite of the child you left.
The highlights.. {scarcasm here!}
*she barely smiles [was known as a smiler last year]
*refusing to work to the extent she has been removed from the class! [just wow this has NEVER EVER happened]
*crys everyday over everything and nothing (again new)
*not speaking to adults well [ok well yes she need reminding sometimes but it’s never been an issue.]
And so much more.
I may have been in hospital, but, she has 2 parents. Yes they told G that she was struggling but OMFG REALLY ….. we could have put things in place .. support or I don’t know?! arranged for me to call her every lunch time … oh I don’t know but SOMETHING … now we are in a situation where it appears that her form teacher thinks she’s a “bad kid” [my assumption not something that’s been said – but I do have my reasons ] Now, they do have pastoral care type person Miss A and she’s great but she’s not in the classroom she’s there as a defuser for when this kick off or have a melt down [again an assumption based on what I’ve seen ] don’t get me wrong she lovely and when D has has a melt down she’s taken her off for a walk so daisy can chat away to her heart content and do a bit if a brain dump- ready to return to class.
My my poor girl [ive not forgotten my boy but I think he would appreciate me just saying how he’s suffered too but because he’s well ard he ok… I joke but seriously – Yes he’s suffered, but since being in cadets he seems to be able to handle things much much better – that said young careers are also helping out]… where was I? Yes D she’s massively been suffering and I feel that we have been somewhat been kept in the dark… perhaps from a well meaning standpoint but one I wholeheartedly believe is wrong.
So …what have we done, tried to reassure her as much as we can especially as she doesn’t believe for one second that I’m not going back into hospital. I’ve sought advice from my wonderful GP who I cannot thank enough Dr L ..and I’m going to see her teacher Tuesday.
Dr L said something that’s very true…
Your family are professional copers…no one knows how much you are going through and dealing with as you have a vissard.
So trying to lower the vissard here’s a few little known family facts ..
Ok dropping my guard here!
G wakes up early every day to prepare my medication. Every day so that I can move in the morning, as without my medication I’m stuck in bed.. [there’s about eight meds, some need crushing and putting into water, some are liquids all need to be in syringes and then go into my feeding tube (PEG)].
Another random one not many people know about is..
I cant be a passenger in a car more than 20 minutes without vomiting [violently even after medication, yet I struggle with fatigue so don’t drive too far… what to do? The thoughts are that the radiotherapy damaged my inner ear massively which also accounts for some of my valence issues.
Anyways this is me signing off – I usually say still smiling but today I am truthfully not smiling
A little update 4 weeks in hospital so far!
I can’t believe it’s been a over week since I last updated and I’m afraid it’s gonna be a long one much like my hospital stay.
Ok so totally I’m on ward 17 at stoke Mandeville Hospital Aylesbury been here for 5 days or so. I’m going to be here for two weeks at least,
In my last post we had discovered the fact that I have been diagnosed with kidney problem and also was having to have a full-time catheter well, 1 out of 2 is still true. My hydronephrosis (swollen not draining kidney) has now resolved because of the full time catheter which is great, but, it means a catheter has to stay which isn’t great so bit of a, sorry, not sorry situation.
We also found out that I had a UTI which was the cause of my temperatures and I also had an infection in my peg site the *new one.
My PEG died
So who’s with update of where we are at the moment my new peg has broken physically broken it’s unusable! So needs replacing! ordinarily this would be a simple one in one out procedure but as the tract the stoma is new it needs time to heal before it’s safe to switch it out. without that, I have no source of nutrition so I’ve had to stay in hospital and be started on something on TPN.
https://en.m.wikipedia.org/wiki/Parenteral_nutrition
Parenteral nutrition is the feeding of nutritional products to a person intravenously, bypassing the usual process of eating and digestion. The person receives nutritional formulae that contain nutrients such as glucose, salts, amino acids, lipids and added vitamins and dietary minerals.
Tpn is given via a picc line which is like a canula but a lot lot longer it goes in the top of my rear left or right arm across your chest into your heart. Mine has 2 ports and one for TPN and one for fluids and medicines.
So that’s my update for now. I can’t seem to get on with writing much atm. So apologies if this hasn’t flowed well.
