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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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Half term….part 1


So  my last post didn’t have the desired effect, the effect I was going for was “wow its been a year, how things have changed” instead I had “is this still how you feel??!”. Which I refuse to answer as, I have always said my blogging is me writing down how I am feeling in that moment, and we all know feeling can change or not.

Anyways I thought I would take this opportunity to look at what cancer has changed for me and my family.

Physically I have changed loads, im 6 1/2 stone lighter which is my silver lining, my cancer diet.

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Recovery? (arm pic but not as gross anymore)


I haven’t blogged for ever and I keep getting asked if I am ok as I haven’t blogged – I am ok – in my own way !

I thought I would start with a quick run down of whats been going on I am seeing Mr Moss 4 weekly and at that appointment I also see speech and language (these are also th people to help with swallow and therefore eating – more about that later on) and I see my nutritionist who wants me to “make up” calories so I have the right amount so I have free reign over ice cream …

 

OK arm pic it looks a bit paler in this picture its more pink in real life – its fully healed and we are using massage to stretch it out as the top bit on the left can get very sore as the skin is so tight. But overall I am pretty happy with how its healed I do still hide it a bit not because anyone has said anything but I just feel more confortable.

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The next few pictures are to show how much weight I have lost .. im now a UK 14/16 and was a UK22,  loosing weight that quickly really messes with your head, you pick up a top size 20 and I go to put it on – it drowns me. I wont need to  shop in Evans ever again, im some ways im more confident with my new body but I most definatly need Gok Wan to get me into some magic knickers – I haven’t got baggy skin or anything its just a mummy tummy after 2 C-section and my pelvic surgery.

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NOw this is a bit of a random picture but I wanted to share a friend of mine is going to make one of these for my son for Christmas, which he is going to love, his aunty JoJo got him the first DVD for his birthday which was 10 days ago, he had a great day he got a BMX scooter, a remote controlled helicopter, £65, 3D bedding!!!! oh and a Darlek  alarm clock which projects the time on the ceiling. Then he went to school hee hee, we then took him to his favourite place to eat out, Harvester, he loves the salad bar, actually so does D. everyone (im not inc) had a great meal and pudding and off we trotted back home for some helicopter fun … it was very funny to watch especially hubby as K expected him to be able to do it straight away and he did not, he was as bad as K but they had a good laugh.

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You might remember me taking a questionnaire about my low moods etc – well I am now on anti depressants and have been for some weeks now and am starting to feel the benefits – I spoke to both my GP and Mr Moss to said its almost unusual for cancer patients / during or after treatment not to become depressed. Weirdly hearing that its normal made it easier to talk about and even put in here.

I had my first “scare” (that should read paranoid crazy lady moment) I hadn’t had a period since May and I started to become aware of this and think of it more as August progressed and I got more worried thinking – has it spread – but I had a clear smear in January, but it could be, what if it is, it could be, you never know omg it is… im going to die .. etc etc. But being the sensible person I am I bottled this up and said nothing to anyone until my amazing health visitor popped over and I turned into a snotty blubbering squeaky voiced mess, she proceeded to get me an appointment the next day I think it was, anyway G came with me as by then I has fessed up my crazy. So I explain it all to the doc as she says you have lost a lot of weight you have been through soo much your body has probably just put it on a back burner for now – she then said but as we have spoken about it it will be here within the week, something no one understands but it happens. We left and 5 days later the doctor was proved right.

 

I guess that’s what I have too look forward to for the next … ever, as you never forget that day you never forget the biopsy or the telling people .. so I think what I am saying is I will always be scared in one way or another that its going to /has come back and it will always have that hold over me.

I know this is turning out to be a long post but I just wanted to update about my eating or lack of, I can manage Weetabix most days – some days it feels to sharp in my mouth and leaves my mouth and tongue so so sore. I have tried lots of other things mash potato different soups and have stolen food off everyone’s plate to try and eat and I haven’t found anything that I can eat without it causing burning pain or making me choke and turn a lovely shade of blue. This is starting to piss me off now as I am fancying food – I see or smell something and want it but I cant…. very frustrating

anyways I need to finish a bit of sewing so I will leave you with a non wonky smile

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As weak as a kitten…


Well friday, after seeing the palliative care doctor (not end if life, but symptom control), who added as drug to my syringe driver and gave me the ok to go home.

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This is Sarah the Dr  I saw and she was THE kindest doctor, she was amazing and I even loved her dress (it was from … Pepper Berry and yes i asked lol)

I can honestly say she was the most supportive doc i have ever seen – she took on board your concerns and made sure you were feeling ok about the decisions which were being made – which inevitably would affect me.

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Just before i left i spotted this to, a LEAF  – i asked what it meant …. I was told by an amazing health care assistant who has helped me loads (pic below) thats they place leaf pictures above the beds of the patients who are at risk of falls’s. I thought it was great.

 

Especially as i did have a fall whilst i was in hospital and didnt want to shout about it ..

imageThis is another amazing member of staff – she never stoppped working and was just so so helpful and lovley .

 

I got home via hospital transport and i will admit i found it bloody hard work – i was so bloody tired and jiggling round didnt help, I got home to discover that the syringe driver (as per video) had come out so we had to call out the district nurse!

 

The next day, saturday,  my aunty,Uncle ands Nannan came round it was great to see them and the kids had a blast – I love that my littler miss “i dont like people i dont know reallly well” loves her great nannanand great aunty and uncle so so much

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imagemummy found the energy to do our first plat

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We then went off to the hospital to collect this … and for a few appointments – i will update appts later as i am soooo tired

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What my furture holds


I have been thinking about this a lot recently and it was dragged kicking and screaming to the surface  today, when we took the children to MacDonalds and I say and cried – not coz i love the food, although i did love a chicken sandwich meal, but I cried because I cannot eat – my last actual meal was the end of Jan. I was sat there thinking I know what that tastes like and I can smell it – but i have no taste – I cannot eat. I felt throughly lonely and “different” it was a very cold and unwelcome feeling.

If I am to think about the future I should get my taste back in a few months – but even then I have half a bloody tongue which doesnt work very well – compared. With all the therapy in the world i will never go out for steak chips with mustard again, never have a date night with hubby at out favourite place in stamford as spicy food is and will be a no go for years to come

Even now when i manage ice cream, its messy, i cannot lick my lips. its embarressting, at 30 years old i need something to wipe my face (i hear the jokes of well im  a messy eater etc but not like this)

I wonder if i will every be confident enough to eat around people.

all of this may seem trivial but if your reading this – please do this …. stick your tongue out — bite your tongue enough to stop it moving– now swallow… that is easier than me swallowing now. I have massive pain which i can only liken to having triple tonsilitis and a throat infection.

Silly things i will never, blow a raspberry with my kids, lick a lolly, whistle for my dogs.

 

I have notice people treating me differently as soon as i start speaking – in shops etc – and rightly or wrongly I feel its down to my facial drop, again it may not seem much to some but I am constantly aware of it – it affects my already pretty shitty speech, i can feel it is in the “wrong” place and mostly how it looks – i don’t look “normal” like me – how i want to look. The scars are pretty bad – as in there’s lots of them but i don’t really mind them. But the mouth drop I HATE IT

 

Not one doctor or nurse has spoken to me about my drop since i was in hospital for my operation. Its like its OK its no biggy – Im inclined to disagree !

 

And the cherry ontop of my day was being asked out to dinner buy someone close who – im hoping was just having a brain fart or mad moment – as i was so bloody thrown by it – but i tell you what its made me feel shocking

 

ahhhh I’m ok – its healthy to have a rant and get it out of your system – or so they say

 

Wonky smiles

 

xxx