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Triple therapy and update!


My goodness it’s been so long since I’ve updated and I’ve done quite a lot where to start. As you may know I’ve moved again and I’m now based in Aylesbury which means a new doctor. I had to find a new Mr Moss let’s find someone I can trust and someone who would look after me, thankfully I have! there is absolutely fabulous doc he’s a black Mr moss if I’m allowed to say that, Mr Fasamade. I’m only seeing him every 6 months or if I’ve got a problem which is fine with me. Although we do have a small hiccup at the moment, due to radiotherapy damage I need to have two teeth extracted and unfortunately when you’ve had radiotherapy your bones in the area of radiotherapy do not heal they are notoriously difficult and so it’s not something that we’re taking lightly. I’ve been put on something called triple therapy, which is a cocktail of drugs to try and prevent something called osteoradionecrosis and which can be very dangerous and so we have to keep everything crossed that its not going to happen. The extraction is on the 17th of September, I may have that wrong but about then. So if you could keep your fingers crossed I’d really appreciate that because I am going into it pretty nervous. Its obviously going to be more difficult because of the radiotherapy but also my mouth is still very very sore and tender and having someone extracting your tooth is my stuff of nightmares, but it needs to happen. Here is a picture of the medication I’m on I have to be on it for seven weeks before my surgery and 5 weeks after ive healed from surgery.

Now you might have seen my post regarding me hoping to be peg free in 12 months! This is something I’ve wanted for for a long time and I’ve wished for and hoped for. Unfortunately realistically it may never happen I still have to rely on it for extra fluids and my medication at the very least, there are days that my mouth is so sore I can’t eat food so I need to top up with special drinks and formula. But I’m no longer pump feeding overnight which in itself is a huge milestone. Being hooked up to a pump overnight was not only and nuisance but it made my bed a hospital bed it made me feel like a patient.

I’ve been keeping pretty well recently I’ve been out of hospital most of the time with only a few little hiccups to do with my feeding tube and I had a bout of abdominal pain which we think was down to the feeling tube. So overall I think I’m getting stronger I feel stronger I’m even crafting making and sewing again now and I’ll pop a few pictures of the things I’ve made recently just show off.

The pendants have forget-me-not flowers in that have been dried in them, they are my absolute favourite.

Anyways I’m going to sign off for now ttfn

As always feel free to message me xx

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Triple therapy and update!


My goodness it’s been so long since I’ve updated and I’ve done quite a lot where to start. As you may know I’ve moved again and I’m now based in Aylesbury which means a new doctor. I had to find a new Mr Moss let’s find someone I can trust and someone who would look after me, thankfully I have! there is absolutely fabulous doc he’s a black Mr moss if I’m allowed to say that, Mr Fasamade. I’m only seeing him every 6 months or if I’ve got a problem which is fine with me. Although we do have a small hiccup at the moment, due to radiotherapy damage I need to have two teeth extracted and unfortunately when you’ve had radiotherapy your bones in the area of radiotherapy do not heal they are notoriously difficult and so it’s not something that we’re taking lightly. I’ve been put on something called triple therapy, which is a cocktail of drugs to try and prevent something called osteoradionecrosis and which can be very dangerous and so we have to keep everything crossed that its not going to happen. The extraction is on the 17th of September, I may have that wrong but about then. So if you could keep your fingers crossed I’d really appreciate that because I am going into it pretty nervous. Its obviously going to be more difficult because of the radiotherapy but also my mouth is still very very sore and tender and having someone extracting your tooth is my stuff of nightmares, but it needs to happen. Here is a picture of the medication I’m on I have to be on it for seven weeks before my surgery and 5 weeks after ive healed from surgery.

Now you might have seen my post regarding me hoping to be peg free in 12 months! This is something I’ve wanted for for a long time and I’ve wished for and hoped for. Unfortunately realistically it may never happen I still have to rely on it for extra fluids and my medication at the very least, there are days that my mouth is so sore I can’t eat food so I need to top up with special drinks and formula. But I’m no longer pump feeding overnight which in itself is a huge milestone. Being hooked up to a pump overnight was not only and nuisance but it made my bed a hospital bed it made me feel like a patient.

I’ve been keeping pretty well recently I’ve been out of hospital most of the time with only a few little hiccups to do with my feeding tube and I had a bout of abdominal pain which we think was down to the feeling tube. So overall I think I’m getting stronger I feel stronger I’m even crafting making and sewing again now and I’ll pop a few pictures of the things I’ve made recently just show off.

The pendants have forget-me-not flowers in that have been dried in them, they are my absolute favourite.

Anyways I’m going to sign off for now ttfn

As always feel free to message me xx

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Scan done – just waiting for results !


So yesterday i had my scan, it was at high Wycombe hospital. the night before i was struggling with feeling stressed and found myself frantically cleaning  which id a default i go to when I’m feeling stressed and over whelmed, its a distraction techniques as I’m obviously worried for the result. Its not helped that its coming up to the anniversary of a fellow head and neck patients deaths, now don’t get me wrong i’m not freaking out i’m just finding that i’m thinking of all scenarios good and bad which, must be pretty common in situations like this right??  Anyway i was up till gone 3 so i was knackered but i got there in my new car (more about that soon).

 

So i managed to find the hospital pretty easily, from the outside it looked like a very old concreted office block (the bit i went into anyways ) but, it was actually a really nice looking hospital once you get inside and it was relatively easy to find. i was seen on time which was amazing ! I then had to have a cannula  inserted and as you all know i don’t have any good veins they are all shot to shit, but we managed to get one, we needed one because it wasn’t a “normal” MRI, by that i mean that there’s a certain way that head and neck MRI’s are done here is a picture –

index

as you can see you have a cage around your head and face and it can be very claustrophobic and my god is it loud ! For my scan I had an injection a dye into my veins and then redid some of the scan, I’m not 100% sure why they did this but who am i to argue!

Once finished i was taken to a nurses room for my cannula to be removed and so i could pop my necklaces back on etc and the radiographer that took the cannula was only one of the ladies from my British sign language course!! how cool is that ! she actually the sweetest person and so kind, it was so nice to see a friendly face.

I have mentioned it before haven’t I ?? I’m doing – or should that be redoing my BSL (British sign language )level 1  course at college one evening a week. I’m actually already qualified but that was 20years ago and i can barely remember a thing. This time round we have THE best tutor, M, she is mad as a box of frogs but very very good at what she does and teaches so well. With sign language being such a visual language it can be a bit daunting and can make you feel a bit daft at times ie “make this face with this hand movements” to mean X you have to let go and just go for it, like this. The group are all fantastic seriously nice and such diversity, all with one goal its very special and it has “forced” me out of the house and meeting other people which i have mentioned before is something i struggle with. anyways ive just been invited for a cuppa with a neighbor so i will go now and i will update as soon as i have some news

 

 

Just one last thought – MR F’s next clinic is the 24th of this month and i will be booked into see him then but if its not good news he will want to see me sooner, so no news is good news right?? well that’s there I’m stood on this one.

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Meeting my new head and neck surgeon, nerve wracking doesn’t come close! & I have a lump in my neck


Well as you all know I now live in Aylesbury area and getting to see Mr Moss is a nightmare its 2 plus hours and with my travel sickness, which is now so severe I have to carry sick bags at all times and take 2 different ant sickness meds – which sometimes work but not all the time – quite frankly I have traveling now – still do it when I need to obviously but it sucks !

so this means I haven’t seen Mr moss since the end of September I think it was, and given I was supposed to be seeing him every 6 to 8 weeks I was majorly over due – I was battling to see someone locally and was getting nowhere in the end I called Macmillan and my old macmillan nurse Lesley and I called PALS at kings lynn hospital – I was starting to panic I was having new symptoms and I have found a lump – its been there since early December and hasn’t changed when I was on antibiotics etc so not just a gland up (like you get with a cold) so anyways – im not sure which one of the avenues worked but I got an appointment 24th March !!!!! NO WAY was that okay, to be honest I cant remember who I called, probably the same people again as I was starting to fell completely at sea without a paddle ! long story short – whilst I was a inpatient I was visited by my new Head and neck specialist nurse called NW and from that I was called by Mr F’s secretary and my appo9ntment was on Friday just gone 27/01/2017.

So I had to get a taxi there as G was in a meeting and it was too soon for me to be driving especially as I was in a tizwas and stressed. it was at Amersham hospital – a lovely little place but very hard to navigate. I got there and promptly asked for a sick bowl as the nerves hit !!!

 

I went in and he was not what I was expecting – not that I know what I was expecting – I think I was dreading having someone who wasn’t MR moss I was expecting Mr Moss’ opposite which simply didn’t happen. I was greeted by NW and Mr F was engaging and interested in what I was saying and listened – he then asked if I had any concerns – I mentioned that the right side of my neck was majorly misbehaving and at times it would go into full spasm which left me look like my ear and shoulder were glues together and my face looked as if I had bells palsy (due to the arm tongue being attached to muscles in neck ) and I said this only happens if I’m sat looking to my left (sort of how I was sat at the time ….(watch this space). I then went on to mention the lump in my neck – saying that G could feel it too so I wasn’t imagining it (coving my crazy ass), next came the examination first external – he firstly looked then felt my neck face and shoulder area it was ok not too painful only a few winces, then he put on his head lamp thingy with magnifying lenses (he did look a bit daft but needs must), and he examined my mouth inside and other than 2 area of dentistry needed he was happy.

BUT the lump he could feel it too – he agreed it was there and had asked for a urgent i.e. within 2 weeks MRI and ultrasound of head and neck to see what’s going on, he did try and reassure me that whist the people booking it may sound pushy to get it done and said  it was just to be sure and not to panic etc., that was when I decided to demonstrate the neck spasm for him !! my god I looked sexy I was practically dribbling – but you know what he was amazing he helped it pass quickly and had given me some medication to help stop them happening – he did mention botox but also said something regarding it may not be possible but by then I was a bit distracted by thoughts of the lump. MR F was great and I instantly felt as ease in his presence, he will never replace Mr Moss but he is great so far!

 

So here we are playing the waiting game! Is the lump something sinister or just a lump ??

 

 

Jan 2017

Mummy blog – because what ever I go through so do they


well as title says really? and I know its not just the kids it G as well.

When I’m in hospital or unwell it effects the whole house which is one of the many reason I hate being in hospital, I can see the effect it is having and yet am powerless to help. There is the emotional side the practical side and the financial side (drinks snacks and dreaded parking/petrol etc.)

D is now 5 but is very much a mummy’s girl at heart although she wraps daddy round her little finger!  and gets away with murder when he’s on duty lol and K is 11, which is a funny age as he’s entering puberty so has all these emotions and has no idea how to handle them – (although now I’ve typed that it sounds like something someone would use to describe all men lol).

We have found that the kids find quick visits easier to deal with, so we manufacture scenarios where they will pop and see mum on the way to, or from X.  This means they don’t get bored and or upset and its nice and upbeat and they can perhaps come twice in a day even if for only 20 minutes at a time set up . Also with D being so active she simply can’t stay still enough and for some reason she is ALWAYS hot in hospitals (perhaps a bit stressed) and a 5 when your hot you take clothes off, which obviously isn’t ideal lol ! !!

K on the other hand goes really quite and doesn’t really know how to handle it as he wants to help but knows he’s out of his depth. Oh that reminds me we were referred to a young carers group and we had a meeting with someone before Christmas and he’s been accepted and this will give him a great place to meet like minded kids who understand what its like to have a mum with additional needs or disability’s or illness’s, they have a youth club and activities. also we have signed him up for scouts – and as long as we can sort out some transport home for him that should be great too (its at the same time as my college course so I will have the car)

That reminds me I taught the kids to sign a song for Christmas and they performed it for Christmas assembly at school and here is a little video if Daisy practicing before the event and here’s a picture of us after we did it with our Head Teachers award stickers

daisykieran-and-mummy

I am so proud of my children – Christ they aren’t perfect but neither am I and who wans robots – they are kind and caring and are fantastic to be around and regardless of my tubes scars and all that goes with it they love me and support me in their own way.

one last thing I wanted to share was this really cool mummy cheat – you know what its like naming and labelling kids school uniform its a bloody nightmare right? WRONG !!!! I have found a company who not only deliver super super quick but they also have they best products

these name tags are amazing you can attach them to everything from shoes to swim towels and school bags even inside uniform and they wash and wash and wash, then there’s the name stickers and again theses wash and wash and wash – D actually outgrew something before the sticker faded !! They also have a ink stamp so you can just stamp your child’s name on their uniform – no sewing or ironing on labels (they never stayed on anyways. I think these are so so good and as a mum who has to think about what energy I have and how to use it on bad days using a stamp rather than having to fiddle and sew etc. is perfect – its literally the perfect product (no I haven’t been paid to say this !) oh and I even use the stamp on husbands uniform as its just a surname !

Here is a link to the website and Facebook

https://www.facebook.com/nametags4u/ and https://www.nametags4u.co.uk/

Anyways its nearly midnight so I will schedule thus to post in the morning and I will update about my MaxFax appointment tomorrow xx

lots of love and thank you to those who follow

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Not the best start to the year,onward and upwards -I say


Well 2017 thus far has been a bit of a bugger ! and hasn’t gone quite to plan

I think I got up to about the 11th in my last post – well I ended up being blue lighted back to hospital. I had attended the Medical centre near me, who, incidentally are simply fabulous, even the receptionist is such a lovely lady H her name is and she just gorgeous and lovely  (apologies if that upsets but we have had some right doozies of doctors receptionists in the past),   I was booked in as a emergency patient and saw the big boss doc (the one who’s car parking space is next to the very narrow disabled space, its so nerve wracking every time I get in and out of the car, I’m worried that I might accidently bash his very expensive Jag when getting out- but so far so good). I went into see the doc who had a look through my records so had a good idea of why I was there, I had a v high temp again and my belly was HUGE, I’m told I passed out in his room as well, but I don’t recall this, so that was that back to hospital.

Once I got to the hospital it was clear I needed IV antibiotics AGAIN and TPN and I would also need a PIC line – its like a cannula but its 40cm long as it goes into the top of the arm and follows they vain all the way to a big artery at the top of the heart .

Here is some information from the PINNT website, they offer great support and information for those with artificial feeding issues etc.

What is Parenteral Nutrition?
Parenteral Nutrition (PN) is a means of supplying your body with nutrients and hydration which bypasses the digestive system. This is achieved through the insertion of a catheter directly into the bloodstream, through which a feed that is specific to your needs is administered. This is commonly referred to as Total Parenteral Nutrition (TPN) or HPN.
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What do the letters TPN mean?
TPN is a common abbreviation for TOTAL PARENTERAL NUTRITION. This literally means to eat (-enteral) through the vein (par-). However the terms PN (Parenteral Nutrition), HPN (Home Parenteral Nutrition) and TPN are often used interchangeably.
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How will the nutrition enter my veins?
A very fine soft tube known as a ‘catheter’ is inserted under the skin of your chest wall into a large vein that leads to your heart. A local anaesthetic is given beforehand to minimise any discomfort. A mild sedative may also be given while your catheter is being inserted. The procedure is normally done under Xray guidance. Once the correct position of the tip of the catheter is confirmed it can be connected to a container of PN fluid using a giving set.
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Will PN contain everything I need?
Your doctor and the nutrition team will have calculated the amount of nutrients you require in your PN to keep your body well nourished. This is done by making measurements of your weight, height and by blood tests and urine collections. Changes may be made to your feed to meet your on-going needs. Due to PN being prescribed on an individual basis, some people may make additions to their PN, if this is necessary you will be taught how and when to do this.
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When will I be fed?
Most people on PN feed whilst they are asleep however it is well documented that the infusion time often extends beyond time spent asleep. You will determine how best to fit in the time you require in order to complete your infusion time with your lifestyle. During the night sleep patterns may be disturbed due to necessary visits to the toilet. Many people find they adjust to this over time but people reported sometimes feeling tired depending on the number of times they need to get up. Feeding as much overnight allows freedom during the day, evening or morning. Each person’s infusion time will be agreed in line with your personal needs. New patients may be given a set time with this being reduced over time.
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Will I be confined to bed or at home?
HPN should not be restricted to lying in bed or staying at home unless that is your choice or is necessary for your individual needs. Portable feeding pumps have made it easier to be mobile whilst receiving your feed. Not all patients want to use a portable pump but improved mobility can be achieved with smaller drip stands for use around the home.
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How long will I need to be on PN?
Some patients will require PN for only a short time, such as to permit the digestive system to rest following surgery or illness or for a variety of reasons. For others they will require PN for the rest of their lives. If a specific condition improves then PN can be reduced or in some cases patients may be switched to enteral feeding depending on their specific medical needs.
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Will I be able to eat and drink?
This will vary according to your condition. Your doctor may suggest that you eat and drink as well as receiving HPN. In fact you may wish to continue eating and drinking on a social basis, which even if your digestive system is unable to absorb the nutrition may help you to feel included in social activities. Your doctor will advise you whether you are able to do this. This is one aspect that may change from time to time depending on your personal needs. If you are constantly thirsty you should contact your doctor or nurse and oral fluids will not replenish the thirst and may actually be detrimental to you. There are some oral mixtures for patients who want and need to drink which contain sugars and salts, these may be suggested on an individual basis.
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How will PN affect me on a day to day basis?
This will depend on the symptoms of your underlying illness. However many patients say that they feel stronger than they have for some time due to being well nourished and hydrated and therefore more able to cope with life.
Thankfully I was only on this for a short time and I got from it the energy I needed and the hydration I needed to allow my stomach to heal or whatever it needed and we were ready to try and use my RIG PEG again. thankfully it was successful this time (30mls per hour at 1kal per ml )- I am still getting pain – it feels like my actual stomach is bruised and it keeps filling with air – at times I can literally aspirate 100-200 +ml’s of air which is a bit odd.
Whilst in I met 2 really nice nutritionists one was called B and the other was called L both of which you just know they know their stuff and more importantly they clearly give a fuck about their patients and are not mechanical like the doctors can be – anyways L mentioned that perhaps I should be looking at my EDS (ehlers Danlos syndrome) as a reason for these feeding issues and it is a condition which can and does effect every single part of the body. so that’s something I will be looking into at some point.
Also whilst I was in I made contact with my new specialist Head and neck cancer Macmillan nurse NW and she was also great and gets it  for example she noticed before I even said anything that I was struggling to face her straight on as my neck was playing silly buggers! she also made me an urgent appointment to see Mr Fasanmade as I haven’t had an appointment since I moved here and I have a few new things cropped up regarding the cancer/cancer treatment side of things.
I mentioned the neck issues well at times these are pretty severe, they range of a tired ache as if my head is waaay to heavy for my neck, to muscle aches that male my right fingers (think its the pinkie and ring finger) tingle, although I still have movement and strength then at its worst it goes into full spasm and its not pretty my head tilts to the left my mouth is slightly open and my tongue (remembering the right side is just a graft and non functional) gets pulled to the base of the mouth and I’m almost paralysed by this I’m unable to do anything ot talk (well I try but its not understandable) until it passes, which can take up to 20 minutes.
I also have a palpable lump in my neck, we noticed it just before Christmas and have tried not to dwell? fret? panic? about this as we all know it could be nothing but we also know the alternative.
I will update about my appointment later
still smiling as ever
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.