So yesterday i had my scan, it was at high Wycombe hospital. the night before i was struggling with feeling stressed and found myself frantically cleaning  which id a default i go to when I’m feeling stressed and over whelmed, its a distraction techniques as I’m obviously worried for the result. Its not helped that its coming up to the anniversary of a fellow head and neck patients deaths, now don’t get me wrong i’m not freaking out i’m just finding that i’m thinking of all scenarios good and bad which, must be pretty common in situations like this right??  Anyway i was up till gone 3 so i was knackered but i got there in my new car (more about that soon).

So i managed to find the hospital pretty easily, from the outside it looked like a very old concreted office block (the bit i went into anyways ) but, it was actually a really nice looking hospital once you get inside and it was relatively easy to find. i was seen on time which was amazing ! I then had to have a cannula  inserted and as you all know i don’t have any good veins they are all shot to shit, but we managed to get one, we needed one because it wasn’t a “normal” MRI, by that i mean that there’s a certain way that head and neck MRI’s are done here is a picture –

as you can see you have a cage around your head and face and it can be very claustrophobic and my god is it loud ! For my scan I had an injection a dye into my veins and then redid some of the scan, I’m not 100% sure why they did this but who am i to argue!

Once finished i was taken to a nurses room for my cannula to be removed and so i could pop my necklaces back on etc and the radiographer that took the cannula was only one of the ladies from my British sign language course!! how cool is that ! she actually the sweetest person and so kind, it was so nice to see a friendly face.

I have mentioned it before haven’t I ?? I’m doing – or should that be redoing my BSL (British sign language )level 1  course at college one evening a week. I’m actually already qualified but that was 20years ago and i can barely remember a thing. This time round we have THE best tutor, M, she is mad as a box of frogs but very very good at what she does and teaches so well. With sign language being such a visual language it can be a bit daunting and can make you feel a bit daft at times ie “make this face with this hand movements” to mean X you have to let go and just go for it, like this. The group are all fantastic seriously nice and such diversity, all with one goal its very special and it has “forced” me out of the house and meeting other people which i have mentioned before is something i struggle with. anyways ive just been invited for a cuppa with a neighbor so i will go now and i will update as soon as i have some news

Just one last thought – MR F’s next clinic is the 24th of this month and i will be booked into see him then but if its not good news he will want to see me sooner, so no news is good news right?? well that’s there I’m stood on this one.

Well as you all know I now live in Aylesbury area and getting to see Mr Moss is a nightmare its 2 plus hours and with my travel sickness, which is now so severe I have to carry sick bags at all times and take 2 different ant sickness meds – which sometimes work but not all the time – quite frankly I have traveling now – still do it when I need to obviously but it sucks !

so this means I haven’t seen Mr moss since the end of September I think it was, and given I was supposed to be seeing him every 6 to 8 weeks I was majorly over due – I was battling to see someone locally and was getting nowhere in the end I called Macmillan and my old macmillan nurse Lesley and I called PALS at kings lynn hospital – I was starting to panic I was having new symptoms and I have found a lump – its been there since early December and hasn’t changed when I was on antibiotics etc so not just a gland up (like you get with a cold) so anyways – im not sure which one of the avenues worked but I got an appointment 24th March !!!!! NO WAY was that okay, to be honest I cant remember who I called, probably the same people again as I was starting to fell completely at sea without a paddle ! long story short – whilst I was a inpatient I was visited by my new Head and neck specialist nurse called NW and from that I was called by Mr F’s secretary and my appo9ntment was on Friday just gone 27/01/2017.

So I had to get a taxi there as G was in a meeting and it was too soon for me to be driving especially as I was in a tizwas and stressed. it was at Amersham hospital – a lovely little place but very hard to navigate. I got there and promptly asked for a sick bowl as the nerves hit !!!

I went in and he was not what I was expecting – not that I know what I was expecting – I think I was dreading having someone who wasn’t MR moss I was expecting Mr Moss’ opposite which simply didn’t happen. I was greeted by NW and Mr F was engaging and interested in what I was saying and listened – he then asked if I had any concerns – I mentioned that the right side of my neck was majorly misbehaving and at times it would go into full spasm which left me look like my ear and shoulder were glues together and my face looked as if I had bells palsy (due to the arm tongue being attached to muscles in neck ) and I said this only happens if I’m sat looking to my left (sort of how I was sat at the time ….(watch this space). I then went on to mention the lump in my neck – saying that G could feel it too so I wasn’t imagining it (coving my crazy ass), next came the examination first external – he firstly looked then felt my neck face and shoulder area it was ok not too painful only a few winces, then he put on his head lamp thingy with magnifying lenses (he did look a bit daft but needs must), and he examined my mouth inside and other than 2 area of dentistry needed he was happy.

BUT the lump he could feel it too – he agreed it was there and had asked for a urgent i.e. within 2 weeks MRI and ultrasound of head and neck to see what’s going on, he did try and reassure me that whist the people booking it may sound pushy to get it done and said  it was just to be sure and not to panic etc., that was when I decided to demonstrate the neck spasm for him !! my god I looked sexy I was practically dribbling – but you know what he was amazing he helped it pass quickly and had given me some medication to help stop them happening – he did mention botox but also said something regarding it may not be possible but by then I was a bit distracted by thoughts of the lump. MR F was great and I instantly felt as ease in his presence, he will never replace Mr Moss but he is great so far!

So here we are playing the waiting game! Is the lump something sinister or just a lump ??

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