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

Still smiling – but with help (arm pic)

It seems like ages since I have updates – I actually think its 4 days which I guess in blog terns is quite a lot. Truth be told I have mostly slept since my last blog.

I mean that literally all I seem to do is sleep, one day I went for a nap at 1am and woke up at 4am .. talk about sleeping your life away…

So the syringe driver that I went home with si working well I haven’t been sick once (touches wood), I developed a lovely allergy to the dressings

, but thankjfully the district nurses had various ones to try. The district nurses have been amazing – I have known some of them since October with my bback so its lovley to see them, yjeu klnow the kids they know the dogs and most importantly they know me and know I look when I am ok. They currently come out every day and refill my syringe driver and whilst they are there every other day they change the dressings on my arm, which incidently is looking fanbloodytastic its amazing here is a pic…


I had the doc round the other day, my GP to see how I was and stuff – the mutual decision was made to start happy pills as I have emotionally been struggling, so rather than having them for depression per say, its situational at the moment. But who knows – I do have a history of depression, from regular depression to post natal. We are just waiting for the medication in liquid form so it can go down the peg.

Talking of the PEG im still 99.9% reliant on the peg now – I am trying things – the other day I tried a cuppa soup I managed a few tea spoons of that and a tiny bit of mega soggy bread ! and I have had ice cream a table spoon at a time. I am getting in creasingly frustrated wit this – I have time that my swallow just doesn’t work – the mechanism just doest work – I have time where I choke and tiem where the pain is simply too much… and that’s all just with water. I try to taste food from g’s plate and its like I have forgotten what to do with it. But its not likr I can taste it anyways….

I have found myself making goals for the future some of which may sound small or pointless but for me atm they seem huge


• Eat Christmas Dinner

• Go On Holiday 2014 (pennies permitting)

• Not be afraid of eating to drinking in front of people

• Not be so self-conscious of my facial/ mouth problems

• Make my sewing our second income rather than a hobby ..

• Be a stronger person

Now its time to go back to bed –

still smiling xx


As weak as a kitten…

Well friday, after seeing the palliative care doctor (not end if life, but symptom control), who added as drug to my syringe driver and gave me the ok to go home.


This is Sarah the Dr  I saw and she was THE kindest doctor, she was amazing and I even loved her dress (it was from … Pepper Berry and yes i asked lol)

I can honestly say she was the most supportive doc i have ever seen – she took on board your concerns and made sure you were feeling ok about the decisions which were being made – which inevitably would affect me.


Just before i left i spotted this to, a LEAF  – i asked what it meant …. I was told by an amazing health care assistant who has helped me loads (pic below) thats they place leaf pictures above the beds of the patients who are at risk of falls’s. I thought it was great.


Especially as i did have a fall whilst i was in hospital and didnt want to shout about it ..

imageThis is another amazing member of staff – she never stoppped working and was just so so helpful and lovley .


I got home via hospital transport and i will admit i found it bloody hard work – i was so bloody tired and jiggling round didnt help, I got home to discover that the syringe driver (as per video) had come out so we had to call out the district nurse!


The next day, saturday,  my aunty,Uncle ands Nannan came round it was great to see them and the kids had a blast – I love that my littler miss “i dont like people i dont know reallly well” loves her great nannanand great aunty and uncle so so much


imagemummy found the energy to do our first plat




We then went off to the hospital to collect this … and for a few appointments – i will update appts later as i am soooo tired



Who would have thought it – i certainly didn’t – its seemed forever away in the beginning… but I’m there – although i cannot take all the credit – i have had a lot  of help.


I did have some bad news this week thou, friday i has the speech and language therapist (SALT) show up … she asked how eating and drinking was going – I said eating had pretty much stopped as i couldn’t taste and it hurt too much so not even eating for taste anymore, and drinking was ok, apart from the choking! RED FLAG to the SALT — I will be right back she says and off she goes – comes back with cups a jelly a yoghurt and a spoon. I am going to do a swallowing assessment she says … she says she will spoon in water and i am to swallow and she will have her hand gently on my throat to check the mechanism of my swallow. Sounds ok to me except o bloody choke about half of the time … i ask to do it a different way, but by then i am tired so choke more. she then goes and gets some thickener. now rightly or wrongly (due to personal experience) i associate this with very sick people. She goes ahead and shows me how it thickens the water and i try it and yes i didnt choke but, I WILL NOT BE USING IT  not how not never… its like wallpaper paste its horrible the texture is just awful. Anyways out of this I am officially diagnosed with an unsafe swallow and am advised not to even try food and not to drink unless it’s thickened !! oh and if i do i am at high risk of chest infections etc !!! Now is it me or is that a bit shit !


Saturday i had a catch up radiotherapy (i missed 2 last week) and then i slept till sunday lol – the tiredness is killing me slowly.


Today I had radio then dr’s he was asking about my sickness and those of you on my Facebook page will know that i had had 2 days of not being sick (yes past tense). he advised cutting out one of the drugs – and i have felt nausea most of the afternoon – i am hoping its a fluke and we shall see what the morning brings – but i do have a bowl ready ! – what a sexy life i lead – its practically sex and the city lol. Other than that he is happy – then SALT and Nutritionist – 2 people who i used to fear – in a im gonna get told off by teacher sort of way .. so i sit down – we work out im having 1000 -1500 kal a day on a good day and sometimes as low as 800. which  even i know isnt great but turns out i am maintaining my weight so she lost that fight although 500mls of water in a day BAD SHOW had to agree on that one.. then SALT she asked if i had used the thickener – I said no and that mentally i wasnt there – that it didn’t seem right ! which is true it really doesnt and I don’t think i will be using it any time soon.


Pain.. Ive been in quite a lot of pain this week my back, neck and mouth/throat… so I have had to take oramorph a fair few times on top of my normal medication. but i guess that why i have it, to take when needed.


I guess i am feeling defiant atm – very much – you say i cant do something so i will – i will prove you wrong, If i am 100% honest it probably stems from fear but i am soooooo not there yet – for now i will happily choke on water and feel crappy each time !


So … I cried

I can honestly say I have only cried a handful of times since diagnosis and that includes when i was told and even after surgery … see i don’t like crying, i worry i wont stop or i will loose control. but tonight i am in a lot of pain, my back isn’t liking the bed that i lay on for treatment and given my surgery was only October im still a bit sore – and my mouth feels like a major dose of tonsillitis and we all know that sucks … mix that up with general knackeredness and a dash of fucked off with the world and I CRY.

G suggested i write in here more often how I am truly feeling ir the bad stuff and not to worry if people don’t like it or read it – just to write it down.

So here goes I am frustrated, I have a friend moving house and normally i would have helped even if it was making the tea.

I am pissed of i haven’t been able to “use” the fact i have recovered from my back surgery.

I feel like a prisoner, who is “exercised” everyday to addenbrookes and back

I wish someone truly knew how i was feeling, how i just want to scream and punch things and how certain people simply could not fuck me off more if they tried .. this is going to sound very “pot calling the kettle”.. but this person is so wrapped up in their woe is me life — which to so many others would be a perfect existence.

I believe in Karma and have recently witnessed it in full force, but if it does exist, why have i had all the shite…. im often reminded i was a shitty teenager and a terrible toddler who never slept, but to my recollection i haven’t done anything too bad, other than some cracking arguments with my mother which no doubt were of my making and my “fiery nature”. When i have been able to to have done volunteer work – even if its spending weeks making some bunting for a children’s charity’s new building – its not much but they appreciated the thought .. i volunteered at a special needs school – i taught children basic sign language .. and i always gave a shit – i would help people where i could – even if its just an ear to listen or a shoulder to cry on… I set up and now run a on line support group for military spouses with additional needs and or disabilities ..

Maybe i have asked too much of people – actually i am certain i have, which is why I haven’t seen anyone well my parents 4 ish times since diagnosis, my friend E is moving so doesn’t count, nor does H as she’s not too well … but thats it no-one …. im lonely – thats not to say i want to inundated with people i dont know well, hugging me and coming over for coffee etc and tbh i would probably find that hard to deal with – i guess i have realised i dont have many friends – more people i know, you know.

its sad really for a woman of 30 to say … which sums up how I am feeling, sad.


And repeat…..


Same view same staff same faces, except the newbys who hold their diagnosis letter and their schedule of treatments as if its proof they should be here… its  obvious many are panicing possibly imagining big cancer fighting lazer beams whereas its a big polo with beeps and clicks.. you want feel it… or see it…. insted you see nothing and generally feel a bit crap and very tired….

Since wednesday my mask hasnt fitted well.. lots of adjustments and now im coming out with a honey comb effect on my head…. look


Today i asked the radiotherapyographer (its something like this, altho im now wondering if i should have an ologist in there too), anyway backing away slowly from my mentalness… the reason for the poor fitting is weight loss… now  this piss’s me off do o look like ive lost weight….


I dont think so …. see ive been trying foods different ones and getting my calories its very frustrating. Im gonna try n get to stamford our local town for some foods i can try…. i did try grapes today… BIG FAIL choked and needed to peel them like u do for your toddler…

Anywayz this is my current view


Oooodles of traffic

Signing off wonky sore smile n all xxxx