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Portugal Holiday – the ups and downs


Hi guys I hope everyone’s doing well. I havent the in the blog-post in quite while, but I really wanted to share some things with you.. some super great and some pretty crappy..I’m writing this from Portugal I’m on holiday with my husband and children as well as my parents and my dad’s mum, my nannan, so the kids great nannan.

This holiday is only been possible thanks to my parents generosity, to say we are grateful is the biggest understatement I don’t even know how to put that into words but we are having the best time.

Before we left…

If you have medical needs, like me there is quite a lot to be organised before you go away, for example your medication you need to make sure you have enough of everything and a medical letter to confirm you are prescribed them, especially important if you have stronger medications as some in countrys it may be a banned substance. (I think Turkey has a ban Codeine banned for example).

I’m very lucky that I have a awesome medical team at my doctors surgery, and a wonderful GP who helped me prepare for my holiday.

So we had 7 day holiday booked so I needed 7 days worth of all my meds, but my doctor said it was sensible/ advisable to take an additional 7 days just in case of delays or other problems. (Similar advice can be found on the Pinnt website too.) That in itself could be quite a lot to organize for most, but if you have liquid medications then the physical size and weight of them makes it difficult. G was great and helped me work out how much we needed of each medication for example

Senna I take that twice a day 20ml each time.

So…. 20ml x 7 = 140ml PLUS 140ml = 280ml

We did this for all of my medications and gave the numbers to my doctor who wrote a fantastic letter explaining everything, including dosges etc and very importantly that I would need to keep all of the medications on my person at all times. This is for a few reasons, firstly if I have it, it cannot end up lost luggage, or stolen. Secondly incase I need to take any meds especially if there is a delay, you may have seen the on the news the guy who had Parkinson’s and was delayed without medication LINK here .  

As My two of my medications control drugs one of them is sort of in that category (pregabalin), nothing we cant handle though.

Then we have my nutritional supplies this is for me ensure compact, flexitainers (empty bottles for pump), the tubing known as giving sets) and syringes. Again we did the maths and my GP added this to my letter. This didnt need to be kept with me but would most definitely use up my baggage allowance cause it weighed 17kg. So I spoke to TUI who added additional baggage for me …I will do a video on how to arrange this and special assistance at airports etc.

We arrived in Portugal and wow it is beautiful and the Villa is amazing once we found it..lol a we went the scenic route

Mom and Dad have been great, from making sure there was a downstairs bedroom to making sure beaches are accessible to somebody on crutches, plus finding shade from the sun as it has been an excessive 35° here most days so it’s been bloody hot. To help me cope with this I’ve added electrolytes to my fluids each night (dioralite) when I have my feeding pump running because I’ve been trying to play catch-up. I don’t reply it’s been bloody hard. 

I have pushed myself each day but have desperately tried not to let it impact on the next day – and to be honest I have done pretty well. Food wise I have tried to take part in meal times but have found it pretty hard I’ve ordered children meals and picked at that, so that I looked and felt part of the family activities. I’ve also managed to hide my chokes and coughing fits……. I have learnt over time to suppress the choke\panic reflex and I just throat clear if I can or calmly ask G to help … it something I’m actually pretty proud of – the main reason I’ve don’t it is panicking makes the choke worse but also being a mummy I try and not scare the kiddo’s . 

I have slept til 9 or 10 most days and with having the pool here we haven’t had to go out to entertain the children (they’re no allowed to go in the pool without an adult on poolside)

Thursday we had our big trip planned so Wednesday I had extra fluids and feeds overnight and slept in in prep for the big trip. 

Thursday we went on a boat trip to see the Caves and Dolphins (the dolphins were a bit shy),  getting to the marina was a 15 to 20 min taxi ride then there was a bit of a walk to the marina where we had lunch and drinks. I was pretty glad to have a sit down and drink cause it was massively hot – we weren’t due to depart till 4 and had hoped it would be cooler by then …WRONG it was still at least 36 degrees….  but because our party had my nanny who is in the 80s and children (and of course me) we chose a boat that had some shade. 

This is who we went with Ocean eye they were brilliant and we DID see some dolphins .. actually me and Daisy saw them first which was awesome and then standing on the boat (folding on for dear life ) whist it sped over the ocean was such and exhilarating feeling – the wind through my hair – it was AWESOME. 

We got off the boat and found a taxi I WAS EXHAUSTED…. seriously knackered – my speech was shit and I was nodding off at a seconds notice, we arrived at the restaurant and I did my usual order a children’s item, and wow it went tits up!!!! 

Almost immediately I choked on the food, and spat it out, and had some drink.Despertaly thing to hide it as a member of our party is *grossed out by my peg and all things related ) I then tried again and this time I couldn’t trigger a swallow so I was doing my chin tucks and NOTHING – I had to spit it out. But in my desperation to be normal I forced some food down and BANG I had food stuck in my throat- cue coughing fit – I did keep calm it enough to walk outside and have a further coughing fit  followed by a visit to the toilets to vomit – I had managed a grand sum of nothing. and was left feeling totally crap and embarrassed (yes I know they’re family and probably don’t care – but I DO… ). The NEED  to look and feel normal is still as strong as it was 6 years ago – I don’t think it will ever leave. 

We came home and the pain of the day hit me and it was a 9 out of 10 – so bad that I needed G to help me go to the bathroom and wash up before bed.  Its not often that I need G to help me with EVERYTHING down to my underwear. I then needed putting to bed, and we made a makeshift fixed sleep position with a duvet from the cupboard and various pillows and cushions. 

I had my max meds including the liquid one PLUS we used the lidnocane patch that we purchased over here in Portugal (I will post about these seperatly soon). 

I woke several time cause of pain and took today very slowly – that said I would 100% do it again – I think sometime we need to take the hit … I  know its coming but we don’t let it stop me …. some might say it’s daft to do it but you know my mantra “fuckit”.

any who this is my penultimate night here and I have had several vodka and cokes so its bedtime. 

sending love to all who’ve managed to read this to the end you are amazing and Iove you lots.. keep fighting whether its cancer, a long term illness or another battle  … you are strong. 

feel free to message me anytime 

mrswiggy.sw@gmail.com

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What does this mean? I cannot go there …not again..


My yearly cancer check-up was this Sunday, it was an overflow clinic hence the weekend. I saw Mr Fasemade who’s the boss man – ie the new Mr Moss.

SOOO, where do I start, I have been aware of a white patch on my tongue for a while, it’s not sore or gross looking its a indent with a white colour. also, I have had a funny feeling when i swallow recently – I kind of feels like one part of the throat is narrower so it feels like I’m swallowing a big lump of food and more recently drink. Now this “symptom” didn’t worry me at all – i just thought it was good old radiotherapy causing the tissues to tighten up or maybe even that it was in my head, i was ramping up towards my yearly check-up so maybe it was in my head – which is why i hadn’t told anyone other than G a few days before the appointment.

So, I go in and as always I notice MR F’s huge hands …. seriously every time I see him this is my first thought… anyway we have the usual hellos and how are yous.
Then it’s time for business, the last time I saw him he said I needed a tooth extracting (side note, radiotherapy demolishes your teeth and makes removal complicated), for this to happen Mr F insists patients have 6 weeks of what he calls triple therapy, which is an antibiotic, a med which helps small vessels have good blood flow and a very high dose Vit E (all from memory so apologies if ive messed up), anyways I was put on this triple therapy and it made me sooo sick, I was vomiting 5 or 6 times every day and felt dreadful, I managed 3 weeks and said NO enough is enough, and essentially cancelled the extraction (this could have gone tits up but I think I got away with it). Mr F then spends what feels like for ever explaining that removing a tooth can lead to osteo-radio-necrosis ie jaw bone death – and that he would need to use my rib or a bone from my lower leg to make me a new jaw as the infection would eat away at the bones of my jaw …. nice huh ??!?

I then tell him I have this white patch and that I have ruled out thrush (something people who have RT get lots of) and that Ive even tried to scratch it off and it has not worked and I want him to look, he does and sees what I mean straight away, he says “it could be s sharp bit if tooth” and shoves a gloved hand into my mouth, feeling for sharp edges, which hes doesn’t find. I say I’m not happy about it and I’m actually quite worried about what this could be. He is very calm and says that we don’t want to jump the gun but he agrees that perhaps we should take a closer look and have a biopsy – he starts filling out a medical photography form, apparently, we need a before shot.

As hes doing this I say “there is this one little thing….. ” and I explain about the throat…. He immediately says, OK we need that scanned – let put it as urgent – and I notice lots of glances between Mr F and the Nurse who was also in the room. He seems much more worried about the throat symptom than the tongue. I’m told i will be contacted and off I go…

WHAT IF

I cannot help but to go there, I have moments where my mind takes me to places i NEVER want to go

  • 6 months down the line I’m on chemo… as I can’t have more radiotherapy to that area
  • surgery .. theres not much tongue to take – what will I be left with – if any – will i talk – will i loose the tip of my tongue this time – –Christ could i loose the whole thing
  • Maybe I cannot take the treatment? let’s face it ive got shitty health and it was so very hard last time – on the whole family …..

Now these are my split-second thoughts so no-one jump the gun, but you really can’t help going there when you have a history like this and TWO potential issues… what will be will be. I’m not letting it control me or take over they are just passing thoughts/worries.

Now a few days later I have my letters for my dates I have my MRI on the 29th Jan and my Biopsy 23 Feb !!!!!!—- I have already called and asked for it to be sooner but was told it was the soonest they had – so I have said that I will take a cancellation appointment and I can be there in 14 minutes.

so now the waiting game…..

or

** surgery .. theres not much tongue to take – what willi be left with – if any – will i talk – will i loose the tip of my tongue this time – –christ could i loose the whole thing

Or

Maybe i cannot take the treatment ? lets face it ive got shitty health and it was so very hard last time – on the whole family …..

Now these are my split second thoughts so no-one jump the gun, but you really cant help going there when you have a history like this and TWO potential issues… what will be will be. Im not letting it control me ot take over they are just passing thoughts/worries.

I have my letters for my dates

MRI on the 29th Jan

Biopsy 23 Feb —- i have already called and asked for it to be sooner but was told it was the soonest they had – so i have said that i will take a cancellation appointment and i can be there in 14 minutes.

so now the waiting game

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It’s not always about the patient !


This post isn’t about me it’s about family and how they are affected by my ill health and my hospital stays. It’s something I’ve mentioned but recently the effects have been bad have been BAD.

As you know I’ve just been discharged after being in hospital for eight weeks. My husband has had to keep the house running, the children going and visiting Me AND all my extra washing as well as things I wanted bringing into the hospital.

Now being a military wife some might say well it’s just the same as when the husband or wife go away on tour. That’s just wrong, when a husband or wife goes away for 4 or 6 months we have to juggle the house, children, dogs, and family we do not have the added stress and worry of having a loved one in hospital and the additional stress of visiting , and finding parking, which is damn near impossible as Stoke Mandiville Hospital! He’s had to cope with the children being upset because mummy is sick, the seven-year-old who is waking up in the night because he misses mummy and is scared that something bad is gonna happen . He then has me phoning whingeing saying I’m having a bad day, saying the crazy patient opposite has been literally screaming for ten hours or that the little old lady you really liked had passed away. Venting my frustrations about Doctors or Nurses or that HCA who was making up numbers when taking SATS (yes I reported him).

When you get home I hope everything will go back to normal but it doesn’t, you come home to a seven-year-old who is crying because she wants a cuddle yet she’s sitting on your lap cuddling you. A child who doesn’t trust your home to stay so doesn’t want to be away from you. One who’s regressed so so much your no longer mummy but mumma.

It gets worse!

While is in hospital I was I thought I kept in the loop about D and how she was coping at school which wasn’t well and what was being done about it.

You come home and take over school run because she wants which is fine and I’m quite liking getting back to normal. Your then told by senior member of staff that she is not just been having a bit of a rough time, she’s now the polar opposite of the child you left.

The highlights.. {scarcasm here!}

*she barely smiles [was known as a smiler last year]

*refusing to work to the extent she has been removed from the class! [just wow this has NEVER EVER happened]

*crys everyday over everything and nothing (again new)

*not speaking to adults well [ok well yes she need reminding sometimes but it’s never been an issue.]

And so much more.

I may have been in hospital, but, she has 2 parents. Yes they told G that she was struggling but OMFG REALLY ….. we could have put things in place .. support or I don’t know?! arranged for me to call her every lunch time … oh I don’t know but SOMETHING … now we are in a situation where it appears that her form teacher thinks she’s a “bad kid” [my assumption not something that’s been said – but I do have my reasons ] Now, they do have pastoral care type person Miss A and she’s great but she’s not in the classroom she’s there as a defuser for when this kick off or have a melt down [again an assumption based on what I’ve seen ] don’t get me wrong she lovely and when D has has a melt down she’s taken her off for a walk so daisy can chat away to her heart content and do a bit if a brain dump- ready to return to class.

My my poor girl [ive not forgotten my boy but I think he would appreciate me just saying how he’s suffered too but because he’s well ard he ok… I joke but seriously – Yes he’s suffered, but since being in cadets he seems to be able to handle things much much better – that said young careers are also helping out]… where was I? Yes D she’s massively been suffering and I feel that we have been somewhat been kept in the dark… perhaps from a well meaning standpoint but one I wholeheartedly believe is wrong.

So …what have we done, tried to reassure her as much as we can especially as she doesn’t believe for one second that I’m not going back into hospital. I’ve sought advice from my wonderful GP who I cannot thank enough Dr L ..and I’m going to see her teacher Tuesday.

Dr L said something that’s very true…

Your family are professional copers…no one knows how much you are going through and dealing with as you have a vissard.

So trying to lower the vissard here’s a few little known family facts ..

Ok dropping my guard here!

G wakes up early every day to prepare my medication. Every day so that I can move in the morning, as without my medication I’m stuck in bed.. [there’s about eight meds, some need crushing and putting into water, some are liquids all need to be in syringes and then go into my feeding tube (PEG)].

Another random one not many people know about is..

I cant be a passenger in a car more than 20 minutes without vomiting [violently even after medication, yet I struggle with fatigue so don’t drive too far… what to do? The thoughts are that the radiotherapy damaged my inner ear massively which also accounts for some of my valence issues.

Anyways this is me signing off – I usually say still smiling but today I am truthfully not smiling

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The battle continues ….. smiling still (occasionally through gritted teeth)


Hello and thanks for reading if your here. I haven’t updated in quite a while which i’m taking as a good thing as i think it means i have not needed this outlet, and perhaps we haven’t had too much going on…. that’s sort of true.  although i am about to have a small operation to put a new PEG in as i have had so many issues with it.

I will start with the amazing fact that we are now post 5 years (2 months) since i finished my treatment, BUT what many people don’t realise is that this is not always the end, ill start with something i shared on my facebook page.

Life after Cancer –Fun fact – When i eat orally, which i don’t do often, but food quite often goes up my nose — and there’s only one way out!
Its a horrible sensation and at times painful but more than that its like the feeling when you get water up your nose when swimming, you know?? then you have to force it out your nose …. sexy no????

Life after cancer for many is a new normal, weather it be a breast cancer patient with lymphedema in their arm or arms or a head and neck patient dealing with a physical change to the face and neck (one that other may see).

Cancer for many leave mental scars that no one will see, for example if i slip off my pillow and wake up laying flat I cannot get up – my neck muscles have atrophied and been cut in places — when this happens my mind jumps back to the times that i was attached to a metal table by a face mask – unable to move – my head squashed in a plastic jail – its a feeling of helplessness, of panic – it doesn’t last long, but long enough.
please join me in saying #fuckcancer 

Another fun side effect is travel sickness …. to such an extent we take sick bags everywhere – i throw up after i have been a passenger for anything more than 10 minutes – sometimes less —- we have tried sea bands but due to the anatomy of my left wrist (donor site) they don’t seem to work – cyclizine – gives me an extra 10 minutes and ondansetron sometimes works … its not just vomiting its a woozy headache that makes me feel rough – its the physical pain of vomiting violently, when you have a PEG vomiting pulls the tube and it HURTS – then theres the effects on the children and G – they seem mum throwing up heaving and looking poorly all the time – Now i don’t get sick when i drive but i suffer from fatigue and at time take strong painkillers so cant always drive!!

 

All of my readers aka friends will know my health is fragile its a balance, both from my cancer side effects (ie radiotherapy damage mainly) and spinal issues, which include cord impingement symptoms and discoordinated bladder etc and my pelvis problems (post metal fixation causing hypermobility in SI Joints causing sacroiliitis). I have to trust how i feel – i get infections that go nuts quickly –  and have UTI infections monthly, but i am extremely lucky to have an AMAZING doctors surgery – so amazing that they see me same day when needed (i don’t use this facility unless needed), from D and J on the reception who know i need a double appt as a rule to the nurses who work with my incredibly difficult to find veins for my regular blood tests. To the pharmacist who has to work extra hard as i need all my items in liquid form for my PEG or for them to be crushable (some you can’t crush – or may be known to block pegs) – she always has a smile and nothing is every too much … & the DOCTORS my goodness they are simply out of this world – here’s a few phrases they have said *you know your body better than anyone tell me what you need from me! *do you think you need to go in? (inpatient hospital) – they always have time for me they have never in my hundreds of visit have made me feel like i have wasted a second of their time or that they are not genuinely interested in me… its a lovely feeling to know this fantastic facility and safety net is there for me.

 

More recently i have been having a few problems, i lost 10kg very quickly and without meaning to ( now i don’t mind but as it wasn’t on purpose it can be a sign of other things) and i have been having muscle spasms … so very severe in my neck, they go into spasm and contort my face – i cannot speak or move my neck and it is extremely painful and they come in groups (for want of a better term) as soon as one stops another starts and some even affects my tongue muscle… OUCH … and the past 2 weeks i have felt like i have a pneumonia ie unable to take a deep breath and having to catch a breath at the end of sentences and a ring of solid muscles mid back round to sides – this is restricting breathing as well.

TRYING TO HELP MYSELF

** I went for a massage with Becca at Scruples who are BRILLIANT in hope of getting the **muscles released but, in her words she *couldn’t get through* and shes awesome so it **certainly wasn’t for the want of trying so that didn’t help.

**I am also addressing my diet – or lack of as i live on ensure drinks via peg and odd **snippets when i’m able to swallow (it comes and goes and technically i’m advised not **to try solids at all). Anyways i have decided that i am going to be adding some juicing to me diet (super shots) alongside some specific natural additives

  •  Manuka honey – which has amazing healing properties – i even had manuka        dressing on infected wounds in the past – its THAT good …. and its tastes AMAZING
  • Aloe juice with cranberry – also is great for digestion and healing and the cranberry is good for bladder health
  • a probiotic which is something most peg users need.
  • Turmeric – which had been proven to have powerful anti inflammatory effect and a strong antioxidant
  • Cacao boost – which is Cacao, Lacuma, Hemp and Maca > these are antioxidants, packed with vitamins and minerals, high quality protein with lots of amino acids and a good source of fiber
  • Flaxseeds -Omega-3 essential fatty acids and fibre
  • Supergreens from bioglan which has iron, Vitamins B12/C/E/Zink

I am not going bonkers with it (it was after weight loss btw) i am adding a few things each week to make sure they agree with me etc. With the amazing advice from my jetsetting sister Jo i am hoping to help improve my overall health – even if it makes it 1% better it has to be worth a shot ??

 

I will just add how amazing lucky I feel to have a fantastic family – we are just finishing out 6 weeks summer holidays and i don’t think i have shouted at me kids once !!! They have been amazing and Gary had been great he took 2 weeks leave staggered over the 6 weeks, which allowed me to rest (i slept for 23 hours in one go last week).

 

family london eyefamily pictire london

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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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The expert patient


I think I’ve written about this previously,  but my GP actually called me this the other day. I was at the doctors, as I am almost weekly at the moment and my Doctor who I respect massively said “well it’s easier when you have an *expert patient*” now, I know why he said this but I can’t help feeling like I’m a nuisance to them, I hate the fact that the doctors and support staff recognise me and say hi Stephanie when I go in, the logical part of my brain knows that they are just being polite but the anxious overthinking part my brain feels as though they are fed up of seeing me, these feelings were made worse in the last couple of weeks let me fill you in.

So on the 3rd of January my peg tube fell out due to the balloon springing a leak. I went to Stoke Mandeville Hospital as I’m supposed to and had to get a new tube inserted. This time there was a problem the hole had started to close so I needed to have a RIG placed

**A radiologically Inserted gastrostomy is a technique whereby a narrow plastic tube is placed through the skin, directly into your stomach. Once in place the tube can be used to give you liquid feed directly into your stomach, to provide nutrition.**

 

As soon as I came round from the procedure I knew something wasn’t right I had pain unlike anything I’ve had before which turned out to be free fluid and air in the abdomen which of course got infected I ended up staying in hospital for almost 3 weeks. Even once home I felt that something wasn’t right and i was having temperatures and abdominal pain (upper left) .  I’ve been back and forth to the doctors for various antibiotics, which seemed to work for a while but then the pain and infection would rear its ugly head again. I’ve been back and forth to the hospital and we couldn’t find out what was going on, and why I wasn’t getting better!

On the 24th Feb I went in with massive temperatures which we couldn’t control at home. I was kept in for 24 hours for IV antibiotics and they also checked the placement of the Peg which was fine (as I had told them it was). On this admission something went wrong! As I was signing in at the reception of accident and emergency at Stoke Mandeville Hospital,  the woman behind the desk could not understand my surname and kept writing it wrong telling me I wasn’t on the computer,  so I wrote it down in capital letters clearly. She still got it wrong! which I simply cant understand (its not like it was rammed). it might not seem that important but it meant that the blood test results and the swabs that were taken were under a different name, and therefore were not checked.  This proved to be a real problem as they showed I had a extremely serious infection which needed treatment. I continued struggling on trying to convince myself this pain was in my head and that I should just man up.

So this week I had to see the duty doctor (GP) as the second or third (lost count) lot of antibiotics had stopped working and the pain was increasing AGAIN, she wanted to get me admitted but I begged to stay home, she agreed on the condition that I see my regular doc after the weekend (cue crazy voice thinking/saying things like *back again!* and I felt rather anxious) but I did agree to come and see Dr P.

Well Dr P took one look at me and knew I wasn’t good, he wanted me seen at the hospital so off I went.

The docs and nurses had 8 attempts at getting blood and after each failure they called a more senior person.  I was in the waiting room for 13 hours in total! 13!

Whilst there Dr P called and said you need to go and tell your doctor your swab results are back it’s MRSA! (in my peg stoma site infection centred on stomach wall its thought) Bloody marvellous that’s just what I wanted to hear!  

The problem was these results were under the misspelt name so didn’t show up on my arrival!

So I tell the doctor and things finally start happening, I’m told that I will need a  PICC line and I will need very strong antibiotics at which point I told them I was not staying hospital. There are several reason for this, the first being the children, it upsetting for them and disruptive and of course I miss them  on a more practical level we would need before and after school club to cover hubby’s working hours and we simply cannot afford this. Thankfully with the persuasive powers of a specialist nurse “L” they agreed to let me go in for IV antibiotics and come home in-between doses. this is obviously needed but if I am being 100% honest I’ve simply had enough! this isn’t normal I can’t help but to ask why? why is all this happening to me? of course I put on a front and pretend that I am fine with all this, but it underneath I’m not fine I’m struggling mentally and physically and practically. What I want is someone to come and scoop me up take control and deal with all my s*** because I feel like I want to run away, but that’s not gonna happen. I now have 2 medical devices “in” my body – my feeding tube and a PICC line, I know the PICC wont be there forever but its just another thing to make me feel ugly. I wish that I just got colds or sore throats but NO I get pneumonias and MRSA. Its exhausting and I genuinely feel alone in this – making friends is hard especially when you are as unreliable as me – not through choice – some days I’m just so tired that if I don’t have a nap I could fall asleep at the wheel on school run (not that I would drive if I felt that tired).

I’m going to come back to this tomorrow but for now it mega late and I need to be asleep