Tag: swallow

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Triple therapy and update!

mycancerandme

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!

mycancerandme

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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It’s been a while

mycancerandme

I’m still here plodding on, I’ve been struggling with my depression and a few infections but otherwise good.

Recently I’ve been doing a lot of reading about head and neck cancers, the one I had along with others including melanoma as I have a friend who has terminal cancer. Knowledge is power right?!!

I’ve obviously seen the *eat this berry and it will cure cancer* blurb and the *it’s the pharmaceutical companies causing cancer so they can make money*. I give those theories as much credit as I do the *drink your own urine to turn you into a unicorn who poo’s rainbows and skittles* . My next post will be more about what I’ve been reading.

There’s something many people don’t realise, once you have had cancer you’re a ‘cancer patient’ for life, if you were to go to hospital for something completely unrelated you will have to explain about your cancer and treatment. You will see your oncologist/ specialist every 4 weeks for a year then 6 weeks for a year then 8 weeks and so on, although I’m sure it would be different for different cancers and treatments etc. I guess what I’m saying is, moving on, forgetting about it. Not that you can forget.

Like many head and neck cancer patients I have lost a lot. I used to enjoy eating (I was fat) and loved date night with my hubby – we used to love a Indonesian restaurant.  I used to laugh, I used to have friends (this should not be taken as a “I must see Steph now coz I had forgotten she existed before”. I know I’m guilty of pushing people away. I struggle with anxiety and what people may think, and hate adding stress to people, that’s something I worry about. For example if I see on Facebook that someone’s struggling with tiredness or stress at home, I wouldn’t dream of asking them to do something even if they offer.  I would far rather offer to help them. That’s obviously a theoretical but you get the idea.

I still haven’t had my new peg fitted I still have my stupidly small tube that blocks all the time, it’s daft really but G has got his funny way of doing one of my meds that blocks all the time, it makes me giggle because he pulls his concentration face .

I did have a call from speech therapy but it’s not been returned as I need a break. I feel like a child at speech therapy,  it’s just so uncomfortable for me. The only one I ever got on with was in Peterborough but she is more post surgery rather than 2 years, and my speech is good most of the time, my swallow is the same the only change is my ultra sexy new skill, if I’m drinking and look downwards my drink comes out my nose lol the kids can’t help but laugh:)☺. But in the grand scheme of things it’s no biggy.

That reminds me 13th of Feb will be the 2 year mark , since diagnosis.  I’m not sure how i feel about that, the first feeling to surface when thinking about it is anger.  Perhaps this date shouldn’t be marked but the date of my last radiotherapy ie cancer free should be. Hummmm I will have a think.

**I have  just had a thought I’ve had a UTI for 4 weeks or more perhaps that is what’s kicking my arse atm. I’m on antibiotics again but maybe it’s that and I’ve woken up today feeling sooo much more awake. (I wrote most of this a 2 pm and I’m just finishing off now)

Any who’s I hope this isn’t too negative for my first post in a while, but as usual I just write what I’m thinking and feeling at the time i write it.

I’m still smiling 🙂 ☺

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