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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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Half term….part 1


So  my last post didn’t have the desired effect, the effect I was going for was “wow its been a year, how things have changed” instead I had “is this still how you feel??!”. Which I refuse to answer as, I have always said my blogging is me writing down how I am feeling in that moment, and we all know feeling can change or not.

Anyways I thought I would take this opportunity to look at what cancer has changed for me and my family.

Physically I have changed loads, im 6 1/2 stone lighter which is my silver lining, my cancer diet.

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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…..?

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Volcano Stephanie


So this was yesterday …
So i lost it in the middle of Sainsbury’s, G was being indecisive about something and i saw red shouting ‘its not like I’m gonna bloody eat any of this, just bloody pick’ with a few bleeps in there for good measure. To be honest  i think its been brewing for a while, I’ve been cooking tea for 3 (admittedly not that often – but im trying) and i might try a tea spoon then bloody choke. Sigh im now in a arsey mardy mood and wish i could drink a lot of vodka !!!! But I spent the evening at my sewing machine which is my de-stress as I love it, here are a few its I have done recently, its a garland / banner with the whole alphabet on for my daughters room, I also made a merry Christmas one for a friend in lovely greens and reds abcdef
 
 
 
Im guessing this is just a new phase “the anger” so watch out im going to turn green and burst out of my clothes and go on a rampage, or not.
 
We do have a lot of potential and real  stress going on in our house at the moment, We have an impending move, a 2 year old who believes like every other 2 year old that the world revolves around her. and who’s newest cringe worthy habit is shouting  COCK  at the top of her lungs after some time we realised that she was actually saying sock… lots of practicing sssssssssssssssssock sssssssssssssssssssssssssssock we now have ssssssssssssCOCK …. PARENTING IS SOOOO MUCH FUN.
 
Then we have our 8 year old who has turned into the devil child who knows all and most defiantly will not be told he is wrong – for example for home work they have to read to an adult 3 times a week, he’s “reading” it alone then asking me to sign his book and when I refuse I am the worst mother that ever was, so I make him read to me and when he gets a word wrong or misses a word as they all do I just tap the word so he knows and can go back, he apparently is too old for sounding out words so that’s like pulling teeth. We were only half way through his homework and he’s been sent to his room, and my goodness I am hoping he doesn’t trash his room like he did the other week for being sent to his room. He’s just sooo moody and mardy, we are making sure that we are rewarding good behaviour big time and verbally reinforcing it – ie thank you for being nice/kind.  suggestions welcome.
 
K is currently upstairs after homework refusal which I will write in his book – I am kind of hoping they make him stay in at break or something to work on it to show him it has to be done – we ll know homework sucks but it was 5 spellings and 5 sentences.
 
Grrrr anyways I managed 750mls of 1.5kal feed over night which is the mist I have had in ages and I have attempted 2 cups of tea – I cannot finish  a whole one, im not sure if its the neck tilt or if my swallow gets tired either way it is getting better and im tasting it which is fab – I never was a tea monster but I did really enjoy a cuppa especially first thing and after school run to warm up etc
 
 
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Recovery? (arm pic but not as gross anymore)


I haven’t blogged for ever and I keep getting asked if I am ok as I haven’t blogged – I am ok – in my own way !

I thought I would start with a quick run down of whats been going on I am seeing Mr Moss 4 weekly and at that appointment I also see speech and language (these are also th people to help with swallow and therefore eating – more about that later on) and I see my nutritionist who wants me to “make up” calories so I have the right amount so I have free reign over ice cream …

 

OK arm pic it looks a bit paler in this picture its more pink in real life – its fully healed and we are using massage to stretch it out as the top bit on the left can get very sore as the skin is so tight. But overall I am pretty happy with how its healed I do still hide it a bit not because anyone has said anything but I just feel more confortable.

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The next few pictures are to show how much weight I have lost .. im now a UK 14/16 and was a UK22,  loosing weight that quickly really messes with your head, you pick up a top size 20 and I go to put it on – it drowns me. I wont need to  shop in Evans ever again, im some ways im more confident with my new body but I most definatly need Gok Wan to get me into some magic knickers – I haven’t got baggy skin or anything its just a mummy tummy after 2 C-section and my pelvic surgery.

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NOw this is a bit of a random picture but I wanted to share a friend of mine is going to make one of these for my son for Christmas, which he is going to love, his aunty JoJo got him the first DVD for his birthday which was 10 days ago, he had a great day he got a BMX scooter, a remote controlled helicopter, £65, 3D bedding!!!! oh and a Darlek  alarm clock which projects the time on the ceiling. Then he went to school hee hee, we then took him to his favourite place to eat out, Harvester, he loves the salad bar, actually so does D. everyone (im not inc) had a great meal and pudding and off we trotted back home for some helicopter fun … it was very funny to watch especially hubby as K expected him to be able to do it straight away and he did not, he was as bad as K but they had a good laugh.

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You might remember me taking a questionnaire about my low moods etc – well I am now on anti depressants and have been for some weeks now and am starting to feel the benefits – I spoke to both my GP and Mr Moss to said its almost unusual for cancer patients / during or after treatment not to become depressed. Weirdly hearing that its normal made it easier to talk about and even put in here.

I had my first “scare” (that should read paranoid crazy lady moment) I hadn’t had a period since May and I started to become aware of this and think of it more as August progressed and I got more worried thinking – has it spread – but I had a clear smear in January, but it could be, what if it is, it could be, you never know omg it is… im going to die .. etc etc. But being the sensible person I am I bottled this up and said nothing to anyone until my amazing health visitor popped over and I turned into a snotty blubbering squeaky voiced mess, she proceeded to get me an appointment the next day I think it was, anyway G came with me as by then I has fessed up my crazy. So I explain it all to the doc as she says you have lost a lot of weight you have been through soo much your body has probably just put it on a back burner for now – she then said but as we have spoken about it it will be here within the week, something no one understands but it happens. We left and 5 days later the doctor was proved right.

 

I guess that’s what I have too look forward to for the next … ever, as you never forget that day you never forget the biopsy or the telling people .. so I think what I am saying is I will always be scared in one way or another that its going to /has come back and it will always have that hold over me.

I know this is turning out to be a long post but I just wanted to update about my eating or lack of, I can manage Weetabix most days – some days it feels to sharp in my mouth and leaves my mouth and tongue so so sore. I have tried lots of other things mash potato different soups and have stolen food off everyone’s plate to try and eat and I haven’t found anything that I can eat without it causing burning pain or making me choke and turn a lovely shade of blue. This is starting to piss me off now as I am fancying food – I see or smell something and want it but I cant…. very frustrating

anyways I need to finish a bit of sewing so I will leave you with a non wonky smile

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Im back !


Its been a long old time since I last blogged this is mainly down to feeling thoroughly rubbish – which I more recently I found out was due to having an infection.

A week ago Friday I was rushed into hospital with a temp of 40.6 and I was totally out of it ! On arrival at the hospital I had a rather batty nurse – she was lovely and looked after me very well- initially the  doctors suspected I had a chest infection – so I was sent for a chest x ray and ten moved to ward B16 the respiratory ward – i was given my own room too, most probably due to the d n v but either way it was a bonus. I has various blood tests which showed i had a raging infection but thy dont show the location either so – i was having IV anti-biotics 4 times a day as well as my usual cocktail, although i had my syringe pump removed and now i just have cyclazine to use as and when – which is a much better solution I think.

 

One night i was happily watching Eastenders and i hear mumbling… i turn around and see a old lady with long grey hair and a zimmer frame looking at me, I smile out of politeness ….. she turns her zimmer and heads her way in to my room still mumbling and grumbling . I press the nurse call button….. she sits in the bed side chair “where is he” she says  i asked the obvious”who” she replies  “da” she replies i told her he wasnt here, and given she was about 90 i did wonder. Eventually the nurses came and ushered her back to bed.

Each day I was promised the gastro doctor would come and see me for both the D n V and to rule out the infection being appendix or bowel etc …. eventually turned up and was terrible, “so you have cancer” was one of his sentances. Anyways he wants to see me as an out patient.

All throughout this i was struggling with seriously low blood pressure 75/48 and alike which was and is making me feel all wooshy headed and collapse. One time was a corker i was on my way back from the loo and my head was spinning and i just went slap straight onto the floor – i had to call for the nurses to help, including a big chap, whos first words were, maybe next time we can meet over a drink lol … they helped me up and down i went with a bang albeit slighly ore controlled this time.

 

The conclusion of this  week stay in hospital….

infection of unknown location now gone

Low BP – ignore and it will go away

D n V  -ignore it and it will go away

 

 

So i am now using the wheelchair much much more incase i fall. its extreemly frustrating – im keeping my fluids up as im told that my help.

 

But Im home and i missed my little people loads D is growingup loads and wants to be so much like mummy and K who is nearly 8 has hit teenager – and is a lot of fun. G has done a fantastic job of keeping the house going –  i just wish i could help more.

 

Im smiling because of my wonderful hubby and kids