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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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Another bump in the road!!


Well, this bloody radiotherapy I had has well and truly buggered me up.

Currently I’m fighting off another bout of cellulitis and mouth sores and mucusitus.  Needless to say, but i will say anyway, I’m in so so much pain. Imagine having salt on a ulser now make that ulser up to 4 mm wide and add 100 more (ish) and your getting close.  The cellulitis thankfully looks like it’s on its way out but for some reason is more painful today. But it IS looking better. I just need to try and not get dehydrated,  with my mouth being so very sore and my TMJ playing up it will not be easy but I don’t want to end up on a drip.

In the past week I’ve lost a stone in weight!! Tbh I’m pretty pleased as I was getting a bit too wobbly.  See i found a silver lining. I won’t lie this has got me very very down. I’ve so much go on. Me and hubby have no real family support (before this gets anyone’s back up I’m referring to visits, yes I know ppl work etc). Although I have a great neighbour who has let Kieran hop into her car on school run when she takers her adorable 2 to the same school.

I think I’ve had so so much to deal with over the past 9 year’s and so much pain both physical and mental,  i guess I’m just worn out.

Not quite smiling if I’m honest

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1 year post radiotherapy and struggling


I’m at my wit’s end, I’m almost 12 months post radiotherapy and 14 most post surgery (half tongue removed and reconstructed with free flap forearm).

I keep having blips, here’s a few:

– Auto immune reaction in mouth causing extensive ulceration.
– Sickness returning on and off
– I STILL  have my peg
– My oral food intake is extremely limited ie scrambled egg, beans, sweet potato, cauliflower, bread sauce, Weetabix, kings mill muffins,  1 brand of pizza. Ice cream.
– Cellulitis which turned into septicaemia.
– Thyroid problems and we are struggling to get my levels right
– Thyroiditis aka Hashimoto’s

Currently my mouth is extremely sore, my cheeks are bleeding after every time i brush my teeth as is my “new tongue”.  Almost every time I try to eat I get a burning sensation which is so severe I can’t even cry. My jaw is so so sore at the joints and has even partially dislocated a few times in the past few weeks.

I have only eaten Weetabix and a few bowls of ice cream all week.
I’m feeling desperate and like I’ve gone backwards so so much. Arggggghhh.

Falsey smiles atm.

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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Stuck in hospital


Just a quick one to apologise for lack of post I’ve not felt great for a while and now I’m in hospital with cellulitus on my face neck and chest. And poss pleurisy.

So I’m feeling very sore and poorly.  But still managing a smile.

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