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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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Uncategorized

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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Diagnosed with tongue cancer!


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 though TWITS  im far too young and i have 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 !!!!