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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Summer Holidays


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

July 2014

We have a plan….


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

Uncategorized

1 year post radiotherapy and struggling


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

Uncategorized

Thursday. ..to Friday


So G came in early today to bring in some clothes and feed, oh and to see me. Unfortunately I was green around gills having had a ‘orrible night. The ward was really busy this morning so I hadn’t had my anti sickness tablets. So poor G ended up passing me bowls. But saying that they’ve changed my antibiotics slightly to help prevent the sickness and ‘other’ side effects.

G was here when the doctors came… they arrive in a little group…..perhaps its a gaggle of doctors or posse perhaps. Theres big
boss doctors who’s name I will never recall, there’s then tall doc with checked shirts and lady doc, she seems to be the one doing all the writing etc. My theory is her writing is the only one that’s readable lol.

Anyways the docs said as I’m struggling to keep my antibiotics down and still have an upset tum I need to stay put till Monday.  Although right this min I am feeling not too bad, but,  I’m due my antibiotics and that’s what sets off the sickness.  oh and I am IV fluids and medicine free now but look at this.

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I’m also being seen by the dentist bloke, a tall slim doc with black rim “nerd” style glasses (only meant as description rather than observation on personality). I’ve been seeing them mainly as they think my arm tongue is very cool but also because my mouth started filling with sores again. So tall doc and his boss doc (who seems really nice incidentally) come to see me today, they did the usual poking and prodding and wished me well for going home soon. My nurse was in here and said well she has to shes got plans….. I told them I was seeing russle howard in Nottingham so must be well. Then out of nowhere tall/nerd doc says

“Do you find him attractive. “

meaning Russel Howard, it was so clinical the way he said it I blurted No (thinking, oh god why did he ask) in fairness I don’t think I would kick Russel Howard out of bed for farting but that’s for another day.

So off go the doctors and I’m left alone, again looking at this. Dank room with 2 windows with what looks like shower curtains as coverage.

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I wondered if anyone uses Viber? It’s an app for both android and iPhones which uses wi-fi for calls txt and pictures… I’ve only just discovered it, my sister is using it in france so we can keep in touch.

I’ve been having visits from my nutritionist lady, she’s really sweet and teeeny tiny as I guess most nutritionist would be…any ways I’ve been allowed to try som yoghurt and custards etc, so far so good although the “little stars” yoghurt are too sharp and I’m not managing them. I’ve been weighed while I’m here and wowsers in 10st 6……. its mental, I’m the only one who seems happy about this, mum and Dr’s not too happy but lets face it I’m not wasting away lol. From my very heaviest I’m now

8 stone lighter

high 5 to my silver lining.

Well I babbled on enough for now I’m going to try to watch a DVD on my laptop as its soooooo boring although my nurse keeps me smiling and the HCA’s are great too… here’s my nurse xx

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This was at the end of a 12 hour shift and still smiling.

Smiles are contagious and make the world go round, share a smile.

I’m still smiling! !!!

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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