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 onto 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…

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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 for example 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.

1 year post radiotherapy and struggling


I’m at my wit’s end, I’m almost 12 months post radiotherapy and 14 most post surgery (half tongue removed and reconstructed with free flap forearm). 

I keep having blips, here’s a few 

Auto immune reaction in mouth causing extensive ulceration. 
Sickness returning on and off
I STILL  have my peg
My oral food intake is extremely limited ie scrambled egg, beans, sweet potato, cauliflower, bread sauce, weetabix, kings mill muffins,  1 brand of pizza. Ice cream.
Cellulitis which turned into septicaemia. 
Thyroid problems and we are struggling to get my levels right
Thyroiditis aka hashimoto’s

Currently my mouth is extremely sore, my cheeks are bleeding after every time i brush my teeth as is my “new tongue”.  Almost every time i try and eat I get a burning sensation which is so severe I can’t even cry. My jaw is so so saw at the joints and has even partially dislocated a few times in the past few weeks. 

I have only eaten weetabix and a few bowls of ice cream all week. 
I’m feeling desperate and like I’ve gone backwards so so much. Arggggghhh. 

Falsey smiles atm.

Being a better person.


Being a better person ??

Since my cancer i have had a urge, a need to make things better. I think its the “live life to it fullest” type theory.

but what is a better life? Is it being more popular having more friends ? Is it doing crazy things like sky diving ? Or is it just being happy ? and if its the later, can anyone be truly happy all the time?

I’m working on the theory, remove stress and i will be happier, unfortunately i cannot remove the children, dogs and husband as that tends to be frowned upon! I guess i don’t have the same stress of other people, i don’t work, i don’t have a busy social calender, but i have health related stress and issues. I have decided i must find a alternative ways to reduce stress.

I am aiming to do at least 10 minutes of yoga a day and I’m planning on learning to do meditation, in fact i have signed up for a course in meditation. it happens to be something i have always been intrigued about.  I am also trying desperately not to hate myself and my body, i have terrible self image issues and rarely feel comfortable looking in a mirror, which unsurprisingly has been made worse by numerous scars and swelling etc. I am my own worst enemy, i am plagued with self doubt about literally everything. Its so ridiculous that i have even managed to talk myself out of attending the Queens Garden Party !! thankfully i have come to my sences and have a wonderful dress and im now looking for a hat. 

Lots of love and hugs to everyone to needs it. Still smiling 

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I don’t think this is the hat.

On the edge


Living on the edge, walking the fine line between being okay and being petrified and convinced it’s back.

Last week I had a scare, I found a lump in the tip of my tongue, between my ‘new’ and old tongue.  I went to the GP straight away.  She looked at My tongue and said ‘yes I see it, it has irregular edges’. Well that was it, irregular edges screams cancer, she made an appointment for me with Mr Moss for the Friday (I think this happened on a Tuesday). I spent the week trying to keep busy but I wasn’t sleeping so was tired, grumpy and my back pain was bad too.

So Friday arrived and G drove me to my appointment in Peterborough.   We were late but so was Mr moss. He examined my mouth and felt my neck. He said he was not in the least bit worried and it was some fibrous tissue or lympodeama.  It was such a relief, but I left with very mixed feelings, I felt stupid for wasting his time, I felt angry at my whole situation, being one step away from fear, and obviously I was relieved that it wasn’t back.

I don’t think I posted about my last Mr Moss appointment.  It was extremely positive and we discussed getting my PEG removed which is something I never thought would happen.  Obviously I’m really happy about that and there are so many positives not least looking good naked. But again the other side of the coin is the what ifs,  will I manage my medication etc etc.

Food wise things are going well, look what I made for tea (my first time eating sweet potatoes ever)

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It’s roasted sweet potato which I liked but the sweet potato mash I wasn’t keen on, then there was bread sause and cauliflower.  I managed about half and was really pleased with that.

So still moving forward and getting better by the day.

Still smiling and who wouldn’t with this at home.

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Up and down like a yoyo …. but it all comes together. Video included.


I wrote this first bit on the 9th of April

Things are a bit crazy atm, I’m back in hospital with issues to do with my thyroid (you might remember my thyroid glands were destroyed by the radiotherapy) or possibly something entirety different.

 

Rewind to last week, I was doing great managing a bit of scrambled egg and baked beans most days and even progressed to mash potatoes. ….. and my ice cream of course.

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Oh and cauliflower with my mash and the soggy bit of the Yorkshire pud (I was a bit/lot over ambitious with what I put on my plate lol)

 

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So Wednesday I was feeling worn out as I hadn’t slept that night but it was a lazy day so no real problems. Wednesday night I slept really well as I recall and was up and sorted early as I had to do school run as G was working.

I had to drive to Stamford to go to the hospital for a unpleasant procedure, to widen my urethra! !!! But it was just a day case and once it was over so was the pain mostly.  The traffic was bad on the way, so when I stopped at a petrol station I called the hospital to say I would be late… The lady I spoke to was very sweet and pretty much said, as long as it was still morning when I got there it would be fine. So I continue on the drive which I’ve done dozens of times and BANG, I’m being thrown back in my seat…. “what why how OUCH” are my initial thoughts. I had no idea what had happened.  I was in shock..i just sat there, a woman came over to me and I opened my window, WERE YOU ON YOUR PHONE she demands, no no its ( I go to point to it on the passenger seat but it’s been thrown into the foot well), no my phones gone I tell her.  She asks what’s happened and I realised I had no idea. The crash happened between 2 roundabouts, and I don’t even remember going around the first….. i started feeling really panicky, having no recollection was scary and tbh still is, before long the ambulance and police are there. I was taken to hospital to get checked over and the police moved my car etc. In fairness everyone was amazing especially a friend who I called, I was so shaken up, she was amazing she just went into auto pilot and called hubsters work and she collected my children who incidentally adore her.

 

Due to my history and having neck pain this is how i looked

 

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And the car. .m

 

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Coming back up to date I was released from hospital following the crash with just bruising, and from my stay with postural low blood pressure so nothing to worry about really.

Looking forward, the sky is the limit, I really want to enrol in some classes and want to make the effort to get out more. But for today I have washing to do heehee.

Here’s my latest video….

I’ve kicked cancers butt: http://youtu.be/xsKC20ScPEc

http://youtu.be/xsKC20ScPEc