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The battle continues ….. smiling still (occasionally through gritted teeth)


Hello and thanks for reading if your here. I haven’t updated in quite a while which i’m taking as a good thing as i think it means i have not needed this outlet, and perhaps we haven’t had too much going on…. that’s sort of true.  although i am about to have a small operation to put a new PEG in as i have had so many issues with it.

I will start with the amazing fact that we are now post 5 years (2 months) since i finished my treatment, BUT what many people don’t realise is that this is not always the end, ill start with something i shared on my facebook page.

Life after Cancer –Fun fact – When i eat orally, which i don’t do often, but food quite often goes up my nose — and there’s only one way out!
Its a horrible sensation and at times painful but more than that its like the feeling when you get water up your nose when swimming, you know?? then you have to force it out your nose …. sexy no????

Life after cancer for many is a new normal, weather it be a breast cancer patient with lymphedema in their arm or arms or a head and neck patient dealing with a physical change to the face and neck (one that other may see).

Cancer for many leave mental scars that no one will see, for example if i slip off my pillow and wake up laying flat I cannot get up – my neck muscles have atrophied and been cut in places — when this happens my mind jumps back to the times that i was attached to a metal table by a face mask – unable to move – my head squashed in a plastic jail – its a feeling of helplessness, of panic – it doesn’t last long, but long enough.
please join me in saying #fuckcancer 

Another fun side effect is travel sickness …. to such an extent we take sick bags everywhere – i throw up after i have been a passenger for anything more than 10 minutes – sometimes less —- we have tried sea bands but due to the anatomy of my left wrist (donor site) they don’t seem to work – cyclizine – gives me an extra 10 minutes and ondansetron sometimes works … its not just vomiting its a woozy headache that makes me feel rough – its the physical pain of vomiting violently, when you have a PEG vomiting pulls the tube and it HURTS – then theres the effects on the children and G – they seem mum throwing up heaving and looking poorly all the time – Now i don’t get sick when i drive but i suffer from fatigue and at time take strong painkillers so cant always drive!!

 

All of my readers aka friends will know my health is fragile its a balance, both from my cancer side effects (ie radiotherapy damage mainly) and spinal issues, which include cord impingement symptoms and discoordinated bladder etc and my pelvis problems (post metal fixation causing hypermobility in SI Joints causing sacroiliitis). I have to trust how i feel – i get infections that go nuts quickly –  and have UTI infections monthly, but i am extremely lucky to have an AMAZING doctors surgery – so amazing that they see me same day when needed (i don’t use this facility unless needed), from D and J on the reception who know i need a double appt as a rule to the nurses who work with my incredibly difficult to find veins for my regular blood tests. To the pharmacist who has to work extra hard as i need all my items in liquid form for my PEG or for them to be crushable (some you can’t crush – or may be known to block pegs) – she always has a smile and nothing is every too much … & the DOCTORS my goodness they are simply out of this world – here’s a few phrases they have said *you know your body better than anyone tell me what you need from me! *do you think you need to go in? (inpatient hospital) – they always have time for me they have never in my hundreds of visit have made me feel like i have wasted a second of their time or that they are not genuinely interested in me… its a lovely feeling to know this fantastic facility and safety net is there for me.

 

More recently i have been having a few problems, i lost 10kg very quickly and without meaning to ( now i don’t mind but as it wasn’t on purpose it can be a sign of other things) and i have been having muscle spasms … so very severe in my neck, they go into spasm and contort my face – i cannot speak or move my neck and it is extremely painful and they come in groups (for want of a better term) as soon as one stops another starts and some even affects my tongue muscle… OUCH … and the past 2 weeks i have felt like i have a pneumonia ie unable to take a deep breath and having to catch a breath at the end of sentences and a ring of solid muscles mid back round to sides – this is restricting breathing as well.

TRYING TO HELP MYSELF

** I went for a massage with Becca at Scruples who are BRILLIANT in hope of getting the **muscles released but, in her words she *couldn’t get through* and shes awesome so it **certainly wasn’t for the want of trying so that didn’t help.

**I am also addressing my diet – or lack of as i live on ensure drinks via peg and odd **snippets when i’m able to swallow (it comes and goes and technically i’m advised not **to try solids at all). Anyways i have decided that i am going to be adding some juicing to me diet (super shots) alongside some specific natural additives

  •  Manuka honey – which has amazing healing properties – i even had manuka        dressing on infected wounds in the past – its THAT good …. and its tastes AMAZING
  • Aloe juice with cranberry – also is great for digestion and healing and the cranberry is good for bladder health
  • a probiotic which is something most peg users need.
  • Turmeric – which had been proven to have powerful anti inflammatory effect and a strong antioxidant
  • Cacao boost – which is Cacao, Lacuma, Hemp and Maca > these are antioxidants, packed with vitamins and minerals, high quality protein with lots of amino acids and a good source of fiber
  • Flaxseeds -Omega-3 essential fatty acids and fibre
  • Supergreens from bioglan which has iron, Vitamins B12/C/E/Zink

I am not going bonkers with it (it was after weight loss btw) i am adding a few things each week to make sure they agree with me etc. With the amazing advice from my jetsetting sister Jo i am hoping to help improve my overall health – even if it makes it 1% better it has to be worth a shot ??

 

I will just add how amazing lucky I feel to have a fantastic family – we are just finishing out 6 weeks summer holidays and i don’t think i have shouted at me kids once !!! They have been amazing and Gary had been great he took 2 weeks leave staggered over the 6 weeks, which allowed me to rest (i slept for 23 hours in one go last week).

 

family london eyefamily pictire london

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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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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

July 2014

We have a plan….


Well the start of a plan. Since my last post I stopped eating due to the pain, so when I went to the doctors he made some phone calls and was clearly very persuasive as I had my dietitian on the phone before I had even left the doctors, well nearly, I had a voice mail as the signal there is a bit random.

So, i use the hands free and return the call she explains that the food diary I did 2 or 3 weeks ago when I was doing really well, wasn’t quite as good as I thought it was the “highlights” were, lack of protein, deficiency in plenty of vitamins and minerals. We then moved on to me barely eating for 2 weeks then not eating for 5 or 6 days, she said I NEED to go back on the feeding pump, she knows I feed over night so it will be many hours till my feed so she says “you need to go in and do a bolus feed, NOW” It’s a good job she’s lovely.

So…

image

This is what I have for bolus feeds, for top ups etc. It’s 300 kals and has lots of vitamins and minerals.

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Ignore the bubbles, not that they are dangerous they would just make me feel bloated and possibly burp lol.

I haven’t done this in forever and sort of forgot a few things such as if I do a full bottle ie 2 syringes I feel sick and bloated. Anyways I rushed too as I was going to see a lady J about getting an allotment plot!! I was in such a rush the second syringe was attached As I was going around the allotment.

So as I mentioned I went to get an allotment plot as I’ve always loved growing vegetables and the opportunity was there. Here’s the vegetables I have in my garden currently.

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Green beans

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courgettes

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My pumpkins ant tomatoes at the top although they have literally doubled in size since I took this picture.

Anyways I’m off to see Mr Moss in the morning.  I’m hoping he can help with my pain and getting me back to eating although I know that may take a while.

Anyways I’m off to sleep as it’s 2 am.

Lots of love and hugs to everyone who’s taken the time to read this, remember smiles are contagious and can really make someone’s day.

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

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Mr Moss


Hello, hope everyone is safe and tucked up inside away from the storms.

So Wednesday I went to see the boss, G drove me after what happened last time. We get there just on time, I go in ahead of G while he parks the car.

I was called to get weighed first and it looks like my weight has finally settled, although in my head I have a fair bit to loose but would have no idea how to go about it with my alreadt limited diet. Moving on, we are called in by a registrar of Mr Moss’ I haven’t met him before but he seemed really nice. We did the usual how are you bla bla bla he has a feel of ny neck. He then gets the boss who’s first words are porridge woohoo. He examines me and suggests I take something for the nerve pains I’ve been having in my jaw.

He then mentions my Baat was not too concerned about a nodule,  well that was bloody news to me but does explain the new appointment I got the other day. Either way a good appointment, I didn’t manage to see speech therapy or nutritionist but I think I have an appointment soon with my new nutritionist.   

I can’t remember if I had mentioned this already but Macmillan have cut all ties…. what happened was I had a phone call from my new Macmillan nurse who I haven’t met but had one previous short call with. Anyway she said as I’m not palliative that Macmillan can no longer see/help me, and that all care should go through my GP. Which is fine but I felt really abandoned, and like it was a kick in the guts.   Now its not like I have asked for anything or called them etc. I guess its another support string cut, so time to suck it up and move on.

On thursday I had a letter come through from the GP  “please come in to discuss your recent results” well that’s never good news is it, the only recent test was my Vit D so I’m guessing its that. I’m off to see them Tuesday. 

We are doing ok at the moment,  I’m even cinsidering going swimming with kieran in the week. Not sure if it will happen but I’m sure we will find something to do.

Well I’m currently laying in bed listening to a hurricane outside, I can hear the roof tiles moving so I dread to think what we will find tomorrow. 

Well I must try and get some sleep.

Still smiling and thinking of my poorly relative who’s back in hospital. 

Stay safe. X