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Update 2017 – still battling on

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HAPPY NEW YEAR EVERYONE

Well here we are almost at the 4 year mark and we all thought it would be way behind us and we would have moved on with life but unfortunately not!

 

Here’s what going on – we are now living near Aylesbury Buckinghamshire (sounds posh doesn’t it ). The kids are doing great Dangerous D is 5 and as adventurous as ever and loving life and my boy is 11 now and is all of a sudden turning into a sporty thing ! who knew? he’s on the football team the netball team (they have a mixed team dues to numbers ) and he’s wanting to do rugby on Sunday mornings ! bye bye lie in ! haa haa only kidding, we have kids there’s no such thing as a lie in. Hubby AKA “G” is doing really well and loving his new role and he has a fantastic boss who had been so so accommodating.

now me !!! drama all the bloody way ! since September I have had 3 peg tubes that failed (the tube split or the balloon burst or the valve was faulty and it fell out), so most recently Jan the 3rd the peg fell out I followed protocol and went straight to A and E peg in hand and explained – unfortunately they were very busy and it was a few hours till I was seen and in this time the stoma started closing ! we managed to get a mall NG tube in it to keep it open and I was kept over night on a drip as I obviously couldn’t use my peg etc – then it all started to go tits up ! the next day I went to x-ray to have a RIG, I did the usual and said – it takes a lot to knock me out and I have EDS and sedatives and local anaesthetics have limited effectiveness yes-yes they said !  so I woke up halfway through and in my have apparently I was “combative” no shit it bloody hurt !!

righow-to-rig

 

 

when I woke up I was in a lot of pain and not really from the peg ! it was in my shoulder and the only way I could describe it was icebergs erupting through my collarbone it was excruciating the only relief was laying totally flat – which is terrible for my back and thanks to radiotherapy I cannot lift my head if I lay flat it really weird actually its like someone’s holding my forehead down I just cant do it lol, I digress. so I was discharged with new RIG PEG on the 4th and the next day was my birthday 34 years old and I’ve only recently decided what I want to do with my life ! more of that later !

in the morning of the 5th I could barely move and was in lots of pain and my tummy was really big but I painted on smiles whilst I received my gifts and opened them I have some gorgeous smellies including bayliss and harding  and ghost and from the children I got this.

birthdaygiftfrom-kids

anyone who knows me will know how happy I was with seeds an sets – I can’t wait to get planting ! I love seeing the fruits of my labour – literally ! we are trying to make raised bed for as little money as possible and using scrap etc (do not thing steptoe yard) it will look beautiful!

so on the 5th I ask Gary to take my discharge notes to the medical centre and I had written a note on there as there was very little information on the discharge summary (it even said I could walk unaided and had no risk of falls lol) anywho my doc, Doc P called to see how I was and by this time 2.30 ish I was in more and more pain. The doc asked if I felt like I had a temperature and I shrugged it off saying no, but he insisted I take my temp 39.9 OOOOPS – he said get to the hospital NOW as I could be going into sepsis — I was in too much pain to get into the car so we had to an ambulance and my numbers weren’t great and they had the usual issues with canualtion and also my sats were low and my bp was in the floor 60 over something ! they gave me gas and air for the pain – GOD I LOVE THAT STUFF and off we went to A and E where I spent a few hors while I received emergency treatment for sepsis I has 2 different antibiotics  and paracetamol for the pain and lovely morphine oh and a drain bag on my (so all the acid etc. was coming out rather that leaking into my abdomen). once I was stable I was put in the walk way as there was no cubicle available so essentially I was in a corridor on a trolley ! nightmare I was hooked up to drips and all over the place, scared and alone. I had my phone in my bra strap near my collarbone and I was in and out of sleep as it was the early hours – I was occasionally woken by people adding drips and or taking me temp and blood pressure – then all of a sudden we were moving we were off to a new ward when they initially I thought I was again going to be in the corridor but there was a bed space available, that when I realised MY PHONE WAS GONE – I hadn’t physically moved so I can only surmise that someone took it! talk about panic and i was heartbroken ! the nurse who wheeled me up ran down to A and E and even went through the laundry bag and there was no luck it was gone! I couldn’t believe it! on top of everything!

 

For the next 11 days I was visited daily by a surgeon who would decide if was suitable for surgery or if they could continue with antibiotics – thankfully I avoided surgery by the skin of my teeth and the medication – tazacin ? and doxycycline? I think they were called seemed to do their job. for those 10 of those 11 days I had nothing in way of nutrition and only had saline /potassium and magnesium infusions!   they were desperate to put me onto TPN (vein feeding) like I had last year but I refused point-blank as I wanted to get home, I didn’t mince my words either ! once we were confident my bowel had healed/ there was no leak we started using the peg, initially I just vomited it up but at a love speed 20mls per hour I tolerated the feed ! but that was only  200 calories in 10 hours so they said I could go home if I made it to 30mls per hour without vomiting, I managed with the help of cyclzine. If I’m honest I’m still pretty dry and not weeing much so I am trying really hard to drink more but its hard you know  after 11 days of starvation your stomach shrinks.

 

anyhow I do now have a working peg it a bit infected and gunky atm so the medical centre are dressing it regularly for me and doing a great job. you know I cannot complain about the medical centre they all go the extra mile and have looked after me so so well in the past few months (I think the fact I bake them cakes helps.)

 

Tomorrow I will give you an update on the cancer care side of things or lack of care – in short, I went from 6 weekly check ups to a 7 monthly check-ups. and i threw my toys out of my pram.

 

 

 

 

 

 

 

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3 years post Radiotherapy. .

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Well this is a milestone and a half!! First thing’s first as far as I’m aware I’m cancer free!!!! I should probably stop there because that’s all that matters, but, I wanted to update as to what’s been going on for the last probably year since my last post.

First of their children are doing great as is husband and we are on the move again this time we are off to RAF Halton it’s a good move was because it’s closer to my maternal grandmother,  and I’ve probably  mentioned her before because I love her to pieces and I can’t wait to be closer. We will also be a little bit closer to other family as well so it will be brilliant for children .

I’ve had a really rocky time if I’m honest I’ve had so so many infections , from facial cellulitis to aspiration pneumonia it’s been hard work. I was in hospital for 9 weeks late last year and even had to be put on tpn. Ive also struggled with exhaustion. It’s been so severe at but I haven’t cared to admit how bad it was. There’s been times where my exhaustion has meant I have slept  the 36 hours without waking once. Then when I do find the energy to get up after an hour or two I’m falling over tired. Or falling asleep in the shower!!

Thankfully at the moment I’m not doing too bad I’ve found a good balance with my medication and nutrition it’s not ideal but it’s working um I’m having regular bloodtests  which you might remember is a bit problematic because I don’t have veins but I feel like we’re ok at the moment.

Of course I wouldn’t be me without some drama! ! so last week I had been doing some baking and was cleaning the kitchen and I started to feel strange and my lips are swollen, we realised I was probably having an allergic reaction, so I took some Piriton and waited for it to work . Unfortunately the swelling continued and was joined by rather unwelcome itching. We call the out of hours doctors service to see if I could perhaps have a double dose of Piriton but they recognised the signs of a life-threatening anaphylactic allergic reaction. Before i knew it i had two paramedics in my living room who were giving me adrenaline and something else but as it wasn’t working they  called for another ambulance ( one which carries different medications).  So now I have 5 paramedics working on me in my living room and I’ve had 4 shots of adrenaline so I’m high as a kite. Long story short I was taken to Hospital overnight and released the next evening and within 6 hours I was back with the same thing!! I still don’t  know what I’m allergic to but I have my epipen and we are working on narrowing it down.  (It’s wasn’t something I’d eaten, more about that after).

Well I’m still on my peg and I still trying to eat. With varying degrees of success.  Some days I just can’t swallow at all . Especially when I  have mucositis which I get every 4 to 6 weeks.

Mucositis is a condition characterised by pain and inflammation of the body’s mucous membrane.

The mucous membrane is the soft layer of tissue lining the digestive system from the mouth to the anus.

Mucositis is a relatively common side effect ofchemotherapy. It’s also sometimes caused by radiotherapy, especially if it involves the head or neck.

oral mucositis – which can cause mouth ulcers(sores) and pain or difficulty swallowing.

What are the symptoms or oral mucositis?

The symptoms of oral mucositis usually begin five to 10 days after starting chemotherapy, or 14 days after starting radiotherapy.

The tissue inside your mouth will start to feel sore, as if you have been burnt by eating hot food. It’s also likely you will develop white patches or ulcers on the lining of your mouth and, in some cases, on your tongue and around your lips.

These ulcers may become very painful and may make it difficult for you to eat, drink or talk. You may also have a dry mouth and a reduced sense of taste. These changes in your mouth can make it more difficult to speak.

Milder symptoms of oral mucositis should ease three to four weeks after your course of chemotherapy or radiotherapy has finished. More severe cases will usually require hospital treatment for monitoring and nutritional support.

Essentially mucositis is like your whole Mouth turning into an ulcer it is hands down one of the most painful things I’ve experienced. The lining of your mouth tongue and gums literally falls way if you touch it. It’s pretty gross really but I haven’t found a way to prevent it but I’m always willing to listen to ideas.

I’ve still got my hang up about wearing my feeding pump and I’m fully aware but it’s all in my head and nobody really gives a shit. So we will gloss over that.

I don’t really get hungry as a rule but sometimes I do and I will have some little sweets or if I’m going crazy !!!! I will have some majorly over cooked cauliflower, yummy. Unfortunately that’s one of the few things I can manage its mild enough in  taste and texture without being starchy or falling apart. I promise I’m not just being picky, i mean who would use cauliflower if they were being picky. I used to manage ice cream quite a lot but I find now that it tends to burn my tongue, that might be the wrong word but it feels like a burn, it causes pain and almost like blood blisters so I don’t have it often have it’s just not worth it.

After all that moaning I have a massive positive and that is that I have been feeling better in myself. My antidepressants were changed a while ago and it has worked amazingly so much so that I’m even back baking, sewing,  making and even some gardening.  

I’m going to sign of the moment but I just wanted to say thank you to everyone who still follows me messages me etc. If you’re just starting out your journey weather it the feeding tubes, head neck Cancer or anything I’ve mentioned please message me I might not get back straight away, I might reply saying I have no idea, but I will reply and if I can help I would love to. I really do believe we’ve got to stick together.

Lots of love Stephanie

Lots and lots and lots of love Stephanie

Hypothyroid

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I think I’ve talked about this before but never at length and i feel now would be a good time to as I’m in the throws of a hypothyroid episode. 

What Does the Thyroid Gland Do?

The thyroid (THY-royd) gland, a small butterfly-shaped gland in the front of your neck, makes thyroid hormones. Thyroid hormones travel from the thyroid gland through the blood to all parts of the body, where they do their work.

Why are thyroid hormones important?

Thyroid hormones help all your organs work well. They control how your body uses food for energy.

Thyroid hormones affect your metabolism rate, which means how fast or slow your brain, heart, muscles, liver, and other parts of your body work.

If your body works too fast or too slowly, you won’t feel well. For example, if you don’t have enough thyroid hormone, you might feel tired and cold. Or, if you have too much thyroid hormone, you might feel nervous, jumpy, and warm.

How does the thyroid gland work?

Your thyroid gland is controlled by the pituitary (pah-TOO-ah-tare-ee) gland, a pea-sized gland located at the base of your brain. The pituitary gland keeps checking the amount of thyroid hormone in your blood. Then it tells your thyroid to make more or less hormone so there’s always the right amount.

Your thyroid uses iodine to make thyroid hormone. Iodine comes from food, mainly seafood and dairy products. It is also added to salt since it can be hard to get enough from food.

Your thyroid gland is located in the front of your neck.

Info from http://www.patient.co.uk (a great resource)

I have something called secondary hypothoidism caused by good old radiotherapy. For me the radiotherapy fried my thyroid glands and if i recall correctly the sonographer  said I had been zapped and shrivelled up.

External radiation
External radiation is most commonly used in the treatment of head and neck cancers (NOT thyroid cancer) and lymphoma. It is an uncommon cause of hypothyroidism. The chance of developing hypothyroidism after external radiation depends on the dose given. External radiation due to nuclear accidents (such as the Chernobyl nuclear reactor incident in 1986) is also a rare cause of hypothyroidism.

Secondary hypothyroidism is a much less common problem. It is caused by diseases that affect the pituitary gland’s ability to make and release TSH. Specific problems include pituitary tumors, postpartum pituitary necrosis (Sheehan’s syndrome — an uncommon problem where all or part of the pituitary dies after childbirth), trauma, or tumors that grow into the pituitary gland.

http://www.mayoclinic.org/diseases-conditions/hypothyroidism/basics/causes/con-20021179

I also found this…but don’t recall where..

Radiation therapy. Radiation used to treat cancers of the head and neck can affect your thyroid gland and may lead to hypothyroidism.

And this

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So from all this you can see the symptoms are many. I added the last one for information as I was suprised by how many foods interact with thyroxine and perhaps others didn’t know.

For me my symptoms include, fatigue,  memory,  weight gain, constipation and i suffer from severe depression and anxiety.  These resulted in me being in bed for a week, last week, sleeping 20 hours a day and not functioning at all. I then had my blood taken, in dramatic style of course, due to my left arm looking like this.

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So the nurse has to use my other arm like every other nurse before her. I have terrible veins apparently they are thin deep and generally crap. Saying that there’s one vein that likes to unload after the nurse takes the needle out, i mean it spurts blood everywhere and even if i tell them it always surprises them and I end up covered in blood from my elbow to my fingers.. see i have to be dramatic. 

So my results came in and my results were around 70 if i recall and moral is between 1 and 3 so it’s pretty high. Saying that looking on various forums I’ve seen ppl saying theirs was over 400 I don’t know if that’s true or even possible but I’m glad mine wasn’t! !

I’m having a follow up blood test next week, I’m also seeing Mr Moss on Friday, SSAFA are taking me as hubster is teaching. I’m particularly nervous for this appointment. One reason is Emily who sadly lost her fight and passed away. This is a go fund me account set up for Emily s husband and 6 children.

http://www.gofundme.com/emilyjane

My husband and his work mates raised £60 + and we rounded it up to £75. If you can afford to please please donate.

Right this is me signing off for now!

Still smiling

Laugh until your belly hurts then laugh a little bit more.

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

730 days Since..

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I became a patient, a statistic, a member of a  club you NEVER ask to join yet can NEVER leave.

I’ve spoken of my depression and anxiety before, but I’ve never found a way to put it in to words.

I’ll try, once you’re in the club you’re playing Russian roulette with Schrödinger’s cancer,  it’s always there, even when it’s not, it is.

My 2 year cancerversary has been playing on my mind, especially as I’ve recently been struggling with infections (9 weeks so far!!), hand in hand with this I’ve felt generally unwell, generally exhausted.  Oh and joy of joys my nausea is kicking my arse again, I can’t even make it out of the village without feeling travel sick, and G is now an expert at finding places to stop so I can puke. The knock on from this is struggling with feeds.  It feels like a vicious circle.

This is a very lonely journey,  terribly so. I no longer have friends, no one says fancy a cuppa? Or are you in, I want a chat…I even have a volunteer friend, yep someone comes to see me once a week, because I’m so lonely I need a reason to get showered and dressed. Now this is no slight on anyone and of course there are exemptions that prove the rule. But I try really hard to not seem desperate while always saying *be my fwend,  come play wiv me..* but I say ‘I’m always in, just pop in, come say hi, I’ll teach you to sew, I’ll make that for you etc’. I always try to ask how people are and offer help and or advice. I set up a support group for military spouses with disabilities and or additional needs to try to fill this gap. But through my awkward paranoid anxious mind I don’t often post in there, because I don’t want my issue to trivialize something else if going through or that people will think it’s *Steph’s moaning again group*.

I try all these things to make friends or to socialise/converse with people. I think I’m the one of those people, that others will say ‘oh yeah I know her’ but that’s as far as it will go. Perhaps it’s always that way for me, I have had friends who I’ve been close to, but it’s never lasted that long.

Anyways, back to where I was going with this; it’s a lonely journey that only members of the club understand,  they understand the pain – it really bloody hurts – they understand struggling with nutrition,  fighting dehydration daily and the FEAR (that word is nowhere near adequate). They understand that if you’re on 6 weekly check ups that, week one is fabulous, two is still good, week three  is rocky and it gets worse from then until week six when you feel anxious and back to square one, and repeat.

One person who truly got this is an online friend, now we aren’t close close but we ‘get it’ we chatted online loads about the pain the struggles, solutions we have found. She’s a wonderful woman. We shared our original diagnosis and we’re progressing similarly.  Until I saw this…

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On reading this I was overcome, I struggled to breath and started choking!  As soon as I got my breath I messaged Em, I can’t recall what I said and I don’t really want look back. It was her hubby who replied,  She’s already sick, really sick.

This broke my heart but it also has filled me with a fear and sorrow that I’ve never experienced.  I cried for days and days. It just makes no sense to me, she’s such an amazing woman.

There’s a link on my Facebook page set up by a friend of theirs to raise some money for the family, for now and for afterwards.  Please, if you can afford to, donate some money. It’s not a lot, but could really help.

My husband is taking part in ‘the suffering race’ an endurance obstacle race and will be seeking sponsorship which will be paid straight into Em’s go fund me account.

On top of this most terrible news, my husbands auntie died, a sweet old lady who made D the most beautiful and delicate receiving blanket, and handmade Christmas cards, her funeral is today. Then we heard that G’s estranged father has cancer that may be terminal.

So all in all it has been pretty shitty recently.

Saying that the children are well, D is 4 next month and I am 2 years post cancer diagnosis and still here!!!

I was picturing this being a memorable post but I’ve not achieved that. But I’ve written what I wanted to and feel better for writing it.

Sending love to those who need it and signing off.

Trying to smile.

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

 

It’s been a while

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I’m still here plodding on, I’ve been struggling with my depression and a few infections but otherwise good.

Recently I’ve been doing a lot of reading about head and neck cancers, the one I had along with others including melanoma as I have a friend who has terminal cancer. Knowledge is power right?!!

I’ve obviously seen the *eat this berry and it will cure cancer* blurb and the *it’s the pharmaceutical companies causing cancer so they can make money*. I give those theories as much credit as I do the *drink your own urine to turn you into a unicorn who poo’s rainbows and skittles* . My next post will be more about what I’ve been reading.

There’s something many people don’t realise, once you have had cancer you’re a ‘cancer patient’ for life, if you were to go to hospital for something completely unrelated you will have to explain about your cancer and treatment. You will see your oncologist/ specialist every 4 weeks for a year then 6 weeks for a year then 8 weeks and so on, although I’m sure it would be different for different cancers and treatments etc. I guess what I’m saying is, moving on, forgetting about it. Not that you can forget.

Like many head and neck cancer patients I have lost a lot. I used to enjoy eating (I was fat) and loved date night with my hubby – we used to love a Indonesian restaurant.  I used to laugh, I used to have friends (this should not be taken as a “I must see Steph now coz I had forgotten she existed before”. I know I’m guilty of pushing people away. I struggle with anxiety and what people may think, and hate adding stress to people, that’s something I worry about. For example if I see on Facebook that someone’s struggling with tiredness or stress at home, I wouldn’t dream of asking them to do something even if they offer.  I would far rather offer to help them. That’s obviously a theoretical but you get the idea.

I still haven’t had my new peg fitted I still have my stupidly small tube that blocks all the time, it’s daft really but G has got his funny way of doing one of my meds that blocks all the time, it makes me giggle because he pulls his concentration face .

I did have a call from speech therapy but it’s not been returned as I need a break. I feel like a child at speech therapy,  it’s just so uncomfortable for me. The only one I ever got on with was in Peterborough but she is more post surgery rather than 2 years, and my speech is good most of the time, my swallow is the same the only change is my ultra sexy new skill, if I’m drinking and look downwards my drink comes out my nose lol the kids can’t help but laugh:)☺. But in the grand scheme of things it’s no biggy.

That reminds me 13th of Feb will be the 2 year mark , since diagnosis.  I’m not sure how i feel about that, the first feeling to surface when thinking about it is anger.  Perhaps this date shouldn’t be marked but the date of my last radiotherapy ie cancer free should be. Hummmm I will have a think.

**I have  just had a thought I’ve had a UTI for 4 weeks or more perhaps that is what’s kicking my arse atm. I’m on antibiotics again but maybe it’s that and I’ve woken up today feeling sooo much more awake. (I wrote most of this a 2 pm and I’m just finishing off now)

Any who’s I hope this isn’t too negative for my first post in a while, but as usual I just write what I’m thinking and feeling at the time i write it.

I’m still smiling 🙂 ☺

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

Sensing tone in the written word

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This is something that has intrigued me for a long while. I find it interesting that you can, for example reply “ok” in a text it can be taken so may ways.

OK,  ie fine whatever I hate you right now!!!!
OK,  ie no issues, I’m happy with that thanks.
OK, ie  lethargic don’t care do what you like.
OK,  ie yippee yayyyyyyyyyyy I’m a happy bunny!!
OK,  ie yep Roger that !

That’s just what I thought
of off the top of my head, sarcasm is a totally different beast,  as without actually stating that your being sarcastic it’s near impossible.

I see this all the time on Facebook, I can’t count the amount of arguments I have seen caused by people meaning one thing and it being read differently, often by different people causing what i could only describe as sub – arguments.

I’m writing this today as I fell victim to this by my own written word, now I’m no real writer, and my punctuation sucks so it’s no surprise it’s happened and it’s not the first time and in this won’t be the last.

So here it is

Me and hubby don’t have much family support (before anyone gets their backs up I’m referring to visits, yes I know ppl work etc )

Looking at it to me it looks like I was immediately defending what i had said, and perhaps in the brackets correcting as well as clarifying. So overall a D- would be the appropriate mark.

Perhaps I could have said due to circumstances  beyond our control we don’t live near to family so rarely see them? Perhaps.

But in essence isn’t the same??

I don’t know, I’m fully aware the lack of visits/support from/seeing family is due to people working, I’ve shared my sisters blog before she’s a steward on yachts all over the  world. Our parents all work and live 3 plus hours away, and 1 works full-time, one part-time and ones retired.

What I’m saying is in my other post,  the quote above I simply meant “I get it” but I have lots of people read by blog who don’t know our families situation.

But the syntax didn’t read that way, the  inflection was misunderstood.

I’m sure this will happen again but I will be more aware from now on.

P.S the antibiotics seem to be working well

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

Another bump in the road!!

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Well, this bloody radiotherapy I had has well and truly buggered me up.

Currently I’m fighting off another bout of cellulitis and mouth sores and mucusitus.  Needless to say, but i will say anyway, I’m in so so much pain. Imagine having salt on a ulser now make that ulser up to 4 mm wide and add 100 more (ish) and your getting close.  The cellulitis thankfully looks like it’s on its way out but for some reason is more painful today. But it IS looking better. I just need to try and not get dehydrated,  with my mouth being so very sore and my TMJ playing up it will not be easy but I don’t want to end up on a drip.

In the past week I’ve lost a stone in weight!! Tbh I’m pretty pleased as I was getting a bit too wobbly.  See i found a silver lining. I won’t lie this has got me very very down. I’ve so much go on. Me and hubby have no real family support (before this gets anyone’s back up I’m referring to visits, yes I know ppl work etc). Although I have a great neighbour who has let Kieran hop into her car on school run when she takers her adorable 2 to the same school.

I think I’ve had so so much to deal with over the past 9 year’s and so much pain both physical and mental,  i guess I’m just worn out.

Not quite smiling if I’m honest

Summer Holidays

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Well its 2 weeks since we started our ‘plan’ of night feeds etc, it’s going ok as long as I’m taking my anti sickness, so could be worse. I’ve not managed much in the way of mls, and 1ml is 1 calorie, here’s an example of a few days feed, 450mls 600 mls 320mls and 0mls as I forgot to put it on.  Also I’m supposed to have 2 to 3 of these a day on top of my night feed to attempt to bring me up to 1700 or 1800 calories a day … anyway it is what they are

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Truth be told, I rarely manage the top ups, due to my almost instant nausea and sickness.  So some days I’m living on 600 calories which is shite. I try to add more but I’m having severe pain as soon as I start eating, doesn’t really make you want to carry on trying to eat, thankfully it’s not every single time by at least 75%.

But the good news is my GP who incidentally is great, says this mouth pain could in theory be down to my hypothyroid, and or my vitamin and mineral deficiencies etc. So hopefully as soon as they all are back up to a healthy level we should be in a much better place. My GP is even trying to find an injectable iron supplement, as the tablets etc don’t agree with me.

In other news I’m doing pretty well, at the moment,  which is a bonus especially as we have just started the summer holidays, which usually fills me with fear and dread, but as the kids get older it seems to be easier.
My poor K thought as soon as the holidays started everyone was out playing all the time?! He got himself all upset on day one and two when no one was around, so I’ve given him a project,  to fill this

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He can fill it with pictures, stories, descriptions of what we have been up to, anything really and it’s a nice thing for him to do in the evening once the Tasmanian devil aka D is in bed. We have a few other bits up my sleeve to keep him occupied,  I will be sure to keep you in the loop.

Don’t forget I have a new blog which in time I will be filtering over to

Www.mrswiggydoingitmyway.com

Still smiling Mwah !!!!

 

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

We have a plan….

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Well the start of a plan. Since my last post I stopped eating due to the pain, so when I went to the doctors he made some phone calls and was clearly very persuasive as I had my dietitian on the phone before I had even left the doctors, well nearly, I had a voice mail as the signal there is a bit random.

So, i use the hands free and return the call she explains that the food diary I did 2 or 3 weeks ago when I was doing really well, wasn’t quite as good as I thought it was the “highlights” were, lack of protein, deficiency in plenty of vitamins and minerals. We then moved on to me barely eating for 2 weeks then not eating for 5 or 6 days, she said I NEED to go back on the feeding pump, she knows I feed over night so it will be many hours till my feed so she says “you need to go in and do a bolus feed, NOW” It’s a good job she’s lovely.

So…

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This is what I have for bolus feeds, for top ups etc. It’s 300 kals and has lots of vitamins and minerals.

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Ignore the bubbles, not that they are dangerous they would just make me feel bloated and possibly burp lol.

I haven’t done this in forever and sort of forgot a few things such as if I do a full bottle ie 2 syringes I feel sick and bloated. Anyways I rushed too as I was going to see a lady J about getting an allotment plot!! I was in such a rush the second syringe was attached As I was going around the allotment.

So as I mentioned I went to get an allotment plot as I’ve always loved growing vegetables and the opportunity was there. Here’s the vegetables I have in my garden currently.

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Green beans

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courgettes

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My pumpkins ant tomatoes at the top although they have literally doubled in size since I took this picture.

Anyways I’m off to see Mr Moss in the morning.  I’m hoping he can help with my pain and getting me back to eating although I know that may take a while.

Anyways I’m off to sleep as it’s 2 am.

Lots of love and hugs to everyone who’s taken the time to read this, remember smiles are contagious and can really make someone’s day.

Still smiling.

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

1 year post radiotherapy and struggling

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I’m at my wit’s end, I’m almost 12 months post radiotherapy and 14 most post surgery (half tongue removed and reconstructed with free flap forearm).

I keep having blips, here’s a few:

– Auto immune reaction in mouth causing extensive ulceration.
– Sickness returning on and off
– I STILL  have my peg
– My oral food intake is extremely limited ie scrambled egg, beans, sweet potato, cauliflower, bread sauce, Weetabix, kings mill muffins,  1 brand of pizza. Ice cream.
– Cellulitis which turned into septicaemia.
– Thyroid problems and we are struggling to get my levels right
– Thyroiditis aka Hashimoto’s

Currently my mouth is extremely sore, my cheeks are bleeding after every time i brush my teeth as is my “new tongue”.  Almost every time I try to eat I get a burning sensation which is so severe I can’t even cry. My jaw is so so sore at the joints and has even partially dislocated a few times in the past few weeks.

I have only eaten Weetabix and a few bowls of ice cream all week.
I’m feeling desperate and like I’ve gone backwards so so much. Arggggghhh.

Falsey smiles atm.

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

BBQ

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This have most definitely been eventful lately, where to start.

Choir, well week 2 I couldn’t go as I barely had a voice, I’m too sure why but at least once a week my voice goes croaky and sometimes just disappears.  Week 3 i turn up and almost instantly i regret it. Other than a speaking voice range i had nothing, there was just no noise. My heart sank and i just knew this wasn’t going to work, well not at the moment.  everyone was practicing so I grabbed my bag and ‘went to the loo’, i wasn’t planning on going back in.  My wonderful neighbour obviously saw my face and followed me, she asked if i was back in and I said no, I don’t think she was overly surprised, I was mortified and was just very aware that I didn’t want to make a fuss, so I sloped off in to the night.  I think if my voice gets stronger and more reliable I will try again. The ladies really are lovely and so welcoming.

What was next…… Our big BBQ !! We held a BBQ to raise money for Macmillan and Cancer Research UK. We invited people through G’s work and Facebook.  We also put an invite through every single house on the street… and the 2 big big bosses houses but non of the misery guts turned up. That is apart from a few who let me know they couldn’t come.

Thankfully those who did were great, C and L were particularly brilliant.

We held a raffle on the day and had some really amazing prizes, we had a wooden boxed golf putting set, champagne,  lots of wine (even though I dufus opened one of the bottles of wine and had a glass, it wasn’t even cold!! And there was plenty in the fridge!!) We had a sock monkey made by C we had 2 lots of Phoenix trading goodies, oh and vouchers for hair cuts at Hair Force, we had back massages from local beauticians,  well all sorts. As well as a super day, we raised £217. 90 and 2 people are sending us cheques but I don’t know how much for. So I’m just waiting on those amounts. Overall a massive success,  I met some new people and became friends with some of our neighbours, who we hadn’t met before. Overall super positive.

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

An Invitation

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We are holding a BBQ to raise money for Macmillan and Cancer Research UK. On the 31st May 2014 from 2pm it’s at our house in Marham, PE33 9PDD.  We are wanting a big doo so if you fancy it message me at mrswiggy.sw@gmail.com.

Also we are looking for raffle prizes if anyone wants to donate x

 

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

Being a Better Person.

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Being a better person ??

Since my cancer I have had an urge, a need to make things better. I think it’s the “live life to its fullest” type theory.

But what is a better life? Is it being more popular having more friends ? Is it doing crazy things like sky diving ? Or is it just being happy ? And if it’s the latter, can anyone be truly happy all the time?

I’m working on the theory, remove stress and I will be happier, unfortunately I cannot remove the children, dogs and husband as that tends to be frowned upon! I guess I don’t have the same stress of other people, I don’t work, I don’t have a busy social calendar, but I have health related stress and issues. I have decided i must find an alternative ways to reduce stress.

I am aiming to do at least 10 minutes of yoga a day and I’m planning on learning to do meditation, in fact I have signed up for a course in meditation; it happens to be something I have always been intrigued about.  I am also trying desperately not to hate myself and my body, I have terrible self-image issues and rarely feel comfortable looking in a mirror, which unsurprisingly has been made worse by numerous scars and swelling etc. I am my own worst enemy, I am plagued with self-doubt about literally everything. It’s so ridiculous that i have even managed to talk myself out of attending the Queens Garden Party !! Thankfully I have come to my senses and have a wonderful dress and im now looking for a hat.

Lots of love and hugs to everyone to needs it. Still smiling

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I don’t think this is the hat.

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

On the edge

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Living on the edge, walking the fine line between being okay and being petrified and convinced it’s back.

Last week I had a scare, I found a lump in the tip of my tongue, between my ‘new’ and old tongue.  I went to the GP straight away.  She looked at My tongue and said ‘yes I see it, it has irregular edges’. Well that was it, irregular edges screams cancer, she made an appointment for me with Mr Moss for the Friday (I think this happened on a Tuesday). I spent the week trying to keep busy but I wasn’t sleeping so was tired, grumpy and my back pain was bad too.

So Friday arrived and G drove me to my appointment in Peterborough.   We were late but so was Mr moss. He examined my mouth and felt my neck. He said he was not in the least bit worried and it was some fibrous tissue or lympodeama.  It was such a relief, but I left with very mixed feelings, I felt stupid for wasting his time, I felt angry at my whole situation, being one step away from fear, and obviously I was relieved that it wasn’t back.

I don’t think I posted about my last Mr Moss appointment.  It was extremely positive and we discussed getting my PEG removed which is something I never thought would happen.  Obviously I’m really happy about that and there are so many positives not least looking good naked. But again the other side of the coin is the what ifs,  will I manage my medication etc etc.

Food wise things are going well, look what I made for tea (my first time eating sweet potatoes ever)

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It’s roasted sweet potato which I liked but the sweet potato mash I wasn’t keen on, then there was bread sauce and cauliflower.  I managed about half and was really pleased with that.

So still moving forward and getting better by the day.

Still smiling and who wouldn’t with this at home.

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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

Up and down like a yoyo …. but it all comes together. Video included.

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I wrote this first bit on the 9th of April

Things are a bit crazy atm, I’m back in hospital with issues to do with my thyroid (you might remember my thyroid glands were destroyed by the radiotherapy) or possibly something entirety different.

 

Rewind to last week, I was doing great managing a bit of scrambled egg and baked beans most days and even progressed to mash potatoes. ….. and my ice cream of course.

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Oh and cauliflower with my mash and the soggy bit of the Yorkshire pud (I was a bit/lot over ambitious with what I put on my plate lol)

 

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So Wednesday I was feeling worn out as I hadn’t slept that night but it was a lazy day so no real problems. Wednesday night I slept really well as I recall and was up and sorted early as I had to do school run as G was working.

I had to drive to Stamford to go to the hospital for an unpleasant procedure, to widen my urethra! !!! But it was just a day case and once it was over so was the pain mostly.  The traffic was bad on the way, so when I stopped at a petrol station I called the hospital to say I would be late… The lady I spoke to was very sweet and pretty much said, as long as it was still morning when I got there it would be fine. So I continue on the drive which I’ve done dozens of times and BANG, I’m being thrown back in my seat…. “what why how OUCH” are my initial thoughts. I had no idea what had happened.  I was in shock..I just sat there, a woman came over to me and I opened my window, WERE YOU ON YOUR PHONE she demands, no-no its ( I go to point to it on the passenger seat but it’s been thrown into the foot well), “no my phone’s gone” I tell her.  She asks what’s happened and I realised I had no idea. The crash happened between 2 roundabouts, and I don’t even remember going around the first….. i started feeling really panicky, having no recollection was scary and tbh still is, before long the ambulance and police are there. I was taken to hospital to get checked over and the police moved my car etc. In fairness everyone was amazing especially a friend who I called, I was so shaken up, she was amazing she just went into auto pilot and called hubsters work and she collected my children who incidentally adore her.

 

Due to my history and having neck pain this is how I looked

 

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And the car. .m

 

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Coming back up to date, I was released from hospital following the crash with just bruising, and from my stay with postural low blood pressure so nothing to worry about really.

Looking forward, the sky is the limit, I really want to enrol in some classes and want to make the effort to get out more. But for today I have washing to do heehee.

Here’s my latest video….

I’ve kicked cancers butt: http://youtu.be/xsKC20ScPEc

http://youtu.be/xsKC20ScPEc

 

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