Jan 2017

Update 2017 – still battling on


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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Uncategorized

Hypothyroid


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.

image

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