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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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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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One year since diagnosis, This is an exact copy of my first post


MY FIRST EVER POST

Things were looking up !! then it all went to ……

FEBRUARY 15, 2013 MY CANCER AND ME

Im not sure where to start so i guess i will start with the begining of this year !!!On the 4th Jan 2013 I recall having a huge headache so bad i put D down for her nap early and had a lie down! I thought i was a migraine which was strange as i havent had one of those in years – but hey nothing to worry about ??The next day was my birthday and whilst i felt shocking my head still banging and now half, exactly half of my tounge was numb i just plodded on, by the sunday i knew i had to see a doc and it had to be that day, so off i went to the out of hours service in peterborough and was rather suprised to be seen straight away, but just thought it was a bit of a bonus.I was in there for what felt like ages and she said i think you have had a TIA .. a mini stroke and ordered me to go to PCH (teh local hospital ) I dont think they realised i was driving but anyways i drove there not realising how seriously they were taking things, well not until i was met at the door of AnE by a lady who introduced herself as the “specialist stoke nurse” bloody billiant i thought !! but i also thought TWITS,  im far too young and i have had so much go wrong with my body so far it wont be that or anything serious (doh)

While there i phoned my parents and asked that they come up (25 mins away) as i needed someone to keep an eye on the children while i had scans etc and i didnt want to phone hubby who was on guard duty — they came but called hubby !! I was less than impressed – I mean of course i was going to call him but I didnt want him unnecessarily worried and rushign away from work when my parents in theory could just help out for a while. Well that was my logic ! Anyways they showed up got kids and were asked to leave by a doc as G arrived at around the same time ! (this pissed them off somewhat i think )Anyways the scans were inconclusive and i was told it was probably a TIA and I was reffered to a nuro -In the mean time i really struggled to eat and joked about being on the best diet ever !!! – i had lost over a stone in less than a month !! (although i can afford to loose another 3 before i will worry too mcuh) – also i kept biting my toung and i had a weird bump on my tounge which i thought was fom biting but i goggled it and google diagnosed tounge cancer 50% suvival rate!!! That was it i was convinced I had the nuro appt on the 24th Jan – at that appt i told her i thing i have tounge cancer !! and that i am a smoker so deserve it but didnt want to die until my daughter was old enough to remember me !!She refered me to the head and neck unit at PCH who i saw on the 5/2/13 i was told it was probably nothing just where i had bitten my tounge but the would biopsey !! which they did a few days later !!

I went in on the 13th for my results and knew it was VERY BAD when they insisted G come in with me, I had said no hes fine the kids are on one – they insisted !!!“so you know we took teh biopsy? Well we have had the results and well you thought it was cancer and we have found cancer “my immediate reaction was “GET MY KIDS OUT OF HERE I DO NOT WANT THEM HEARING THIS”THE NEXT 10 MINUTES WAS A BLUR i was given forms leaflets and told its like skin cancer but on the tounge and we wouldnt know more until we had more tests done …THEN THE TWIST !!!!

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

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Burger and chips with lashings of ketchup


So since my last post ive had my birthday, Im 31 it was a very anti climatic birthday. As this time last year I had a numb tongue and had no idea what was to about to happen,  then later in the year I truely wondered if I would have another birthday or if i would see one of my childrens. I felt in some way there should have been a fan fair “yayyy your alive” but I guess its not the done thing.

For my birthday G got me a galexy tab3 which im currently using by the way, hes really been great through all of this, making allowances for my tiredness, helping  me with my meds and feeds. Who knew our marriage would go through so much, him being my carer *again* (im refering to my pelvic surgery and all the problems), 9 house moves, 2 kids and 2 dogs.

Ive been trying to eat more not quite burger and chips with lashings of ketchup but I did manage to swallow the tinyist bit of a chip, yes it was aided by a swig of water. I tried to have some pasta bolognese, I spent a good ten minutes cutting up the pasta ready to eat, I had taken my pain killers in advance.  I managed probably a table spoon of food, or so I thought it turned out half was in the roof of my mouth and the rest was just a little down my throat. The end result wasnt pretty, and left me feeling really low, wondering why bother.  Its very hard seeing food you used to love, taste them and they are horrible or actually cause pain. I could really do with some help swallowing from speech and language, but it appears in on the list. 

I have my sewing mojo back and have discovered something called crazy quilts, and have started to make a quilt  I will share a few pics on my Facebook page.

Oooh I havent update on the torture tool aka the therabite, its gone to pot as my jaw pain had been bloody horrible it seems to be going up into my ear, its enough to stop me in my tracks.

Friday im off to see Mr Moss with no major panics or worries … maybe that means something

Still smiling and doing good

Before I go does anyone want to go to http://www.sewingshow.co.uk with me…..?