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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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Half term part 2


So we are at the end of half term, we haven’t done anything too exciting but its been good, well other than THE worst mummy fail ever, essentially I told my 8 year old boy he could not wear deodorant because he hasn’t started his periods, in my defence I meant to say puberty. Then thee was a very very awkward 10 minute conversation about the basics of puberty with my 8 year old. I was expecting him to be traumatised by the conversation, but instead he just said “can I go on my xbox” and off he went happy as larry.

So last week I went to the docs for the results of my Vitamin D blood test results, the doctor who I had never seen before spent ages looking into my thyroid issues and I kept trying to say – I have seen a consultant recently so its ok – but he kept saying hang on a minute – it was so frustrating. Anyway I got my results and my vit d is pretty low nothing to worry about but worth trying to up it . He said that I should try and get something for Holland and Barett, but as I cant swallow, so I found a multi vit “tonic” which can go down my feeding tube and has Vit D in it. I then mentioned my increasing back pain, especially my lower back. He examined my back briefly and said he was going to write to Mr Moss and request a bone scan to check its not related to my cancer. Well that was it the shutters came down – I was pissed off – I couldn’t get away from this bloody cancer I felt penned in. Once I had left I stewed for a while then wrote the Dr a note asking him not to request the scan as I thought it was an over reaction. I don’t know if he took notice.

I wrote this on my facebook page and had lots and lots of comments asking me to have the scan and or to speak to the doctor. So I have made a double apt with a doctor that I have seen before so all should be good.

Today we took the kids to the park, it was great and a friend was there with her hubby and kids, it was a lovely atmosphere and the kids had a ball, unfortunately when we got home D became very hot with a temperature and came out in a rash – so Calpol and brufen and she was doing much better. I’m hoping she’s ok for next week as I have lots of appointments.

Other than that I have been doing ok – my jaw pain has been the same but I have managed porridge most days and manage to drink a whole bottle of chocolate milk today. Also I have left the house a few times without my scarf which is a bit of a milestone for me.

Enough rambling for tonight i’m off to bed.

#still smiling

 

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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…..?