cancer, dehydrated, disabled mummy, exhausted, head and neck cancer, hemiglossectomy, hospital, hypothyroid, infection, late effects of head and neck cancers, mouth cancer, MRSA, PEG feeding., Radiotherapy, side effects of radiotherapy, surgery, suvivor, tongue cancer, treatment, Whats radiotherapy like
Well this is a milestone and a half!! First thing’s first as far as I’m aware I’m cancer free!!!! I should probably stop there because that’s all that matters, but, I wanted to update as to what’s been going on for the last probably year since my last post.
First of their children are doing great as is husband and we are on the move again this time we are off to RAF Halton it’s a good move was because it’s closer to my maternal grandmother, and I’ve probably mentioned her before because I love her to pieces and I can’t wait to be closer. We will also be a little bit closer to other family as well so it will be brilliant for children .
I’ve had a really rocky time if I’m honest I’ve had so so many infections , from facial cellulitis to aspiration pneumonia it’s been hard work. I was in hospital for 9 weeks late last year and even had to be put on tpn. Ive also struggled with exhaustion. It’s been so severe at but I haven’t cared to admit how bad it was. There’s been times where my exhaustion has meant I have slept the 36 hours without waking once. Then when I do find the energy to get up after an hour or two I’m falling over tired. Or falling asleep in the shower!!
Thankfully at the moment I’m not doing too bad I’ve found a good balance with my medication and nutrition it’s not ideal but it’s working um I’m having regular bloodtests which you might remember is a bit problematic because I don’t have veins but I feel like we’re ok at the moment.
Of course I wouldn’t be me without some drama! ! so last week I had been doing some baking and was cleaning the kitchen and I started to feel strange and my lips are swollen, we realised I was probably having an allergic reaction, so I took some Piriton and waited for it to work . Unfortunately the swelling continued and was joined by rather unwelcome itching. We call the out of hours doctors service to see if I could perhaps have a double dose of Piriton but they recognised the signs of a life-threatening anaphylactic allergic reaction. Before i knew it i had two paramedics in my living room who were giving me adrenaline and something else but as it wasn’t working they called for another ambulance ( one which carries different medications). So now I have 5 paramedics working on me in my living room and I’ve had 4 shots of adrenaline so I’m high as a kite. Long story short I was taken to Hospital overnight and released the next evening and within 6 hours I was back with the same thing!! I still don’t know what I’m allergic to but I have my epipen and we are working on narrowing it down. (It’s wasn’t something I’d eaten, more about that after).
Well I’m still on my peg and I still trying to eat. With varying degrees of success. Some days I just can’t swallow at all . Especially when I have mucositis which I get every 4 to 6 weeks.
Mucositis is a condition characterised by pain and inflammation of the body’s mucous membrane.
The mucous membrane is the soft layer of tissue lining the digestive system from the mouth to the anus.
Mucositis is a relatively common side effect ofchemotherapy. It’s also sometimes caused by radiotherapy, especially if it involves the head or neck.
oral mucositis – which can cause mouth ulcers(sores) and pain or difficulty swallowing.
What are the symptoms or oral mucositis?
The symptoms of oral mucositis usually begin five to 10 days after starting chemotherapy, or 14 days after starting radiotherapy.
The tissue inside your mouth will start to feel sore, as if you have been burnt by eating hot food. It’s also likely you will develop white patches or ulcers on the lining of your mouth and, in some cases, on your tongue and around your lips.
These ulcers may become very painful and may make it difficult for you to eat, drink or talk. You may also have a dry mouth and a reduced sense of taste. These changes in your mouth can make it more difficult to speak.
Milder symptoms of oral mucositis should ease three to four weeks after your course of chemotherapy or radiotherapy has finished. More severe cases will usually require hospital treatment for monitoring and nutritional support.
Essentially mucositis is like your whole Mouth turning into an ulcer it is hands down one of the most painful things I’ve experienced. The lining of your mouth tongue and gums literally falls way if you touch it. It’s pretty gross really but I haven’t found a way to prevent it but I’m always willing to listen to ideas.
I’ve still got my hang up about wearing my feeding pump and I’m fully aware but it’s all in my head and nobody really gives a shit. So we will gloss over that.
I don’t really get hungry as a rule but sometimes I do and I will have some little sweets or if I’m going crazy !!!! I will have some majorly over cooked cauliflower, yummy. Unfortunately that’s one of the few things I can manage its mild enough in taste and texture without being starchy or falling apart. I promise I’m not just being picky, i mean who would use cauliflower if they were being picky. I used to manage ice cream quite a lot but I find now that it tends to burn my tongue, that might be the wrong word but it feels like a burn, it causes pain and almost like blood blisters so I don’t have it often have it’s just not worth it.
After all that moaning I have a massive positive and that is that I have been feeling better in myself. My antidepressants were changed a while ago and it has worked amazingly so much so that I’m even back baking, sewing, making and even some gardening.
I’m going to sign of the moment but I just wanted to say thank you to everyone who still follows me messages me etc. If you’re just starting out your journey weather it the feeding tubes, head neck Cancer or anything I’ve mentioned please message me I might not get back straight away, I might reply saying I have no idea, but I will reply and if I can help I would love to. I really do believe we’ve got to stick together.
Lots of love Stephanie
Lots and lots and lots of love Stephanie