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Portugal Holiday – the ups and downs


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

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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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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