Surgery update

Oooooookay people, we are on our way. Holy Moly this is actually going to happen. I am going to get a major organ taken out. There is a sentence I didn't think I would say. 

When I had my ostomy surgery last year I always knew that the colon had to go and I knew the longer I had it still in tact the more the symptoms would increase and the more uncomfortable and poorly I would get. I felt so chipper after my surgery though all those symptoms felt a long way off. When I had to ostomy surgery my surgeon tried to empty the enormous amount of, well, you know what but he wasn't able to meaning I am quite literally full of, erm, you know what and it's been in there for over a year now. Gross I know. 

In all honesty when I went to see my surgeon back in January he wanted to book me in for March but I was still deeply in shock about the last surgery without even knowing I was in shock. I thought I was doing great and just wasn't ready to think about more surgery. It wasn't until I spent mothering sunday afternoon on the bathroom floor crying, well, sobbing that I realised for the first time something was really wrong. 

I guess admitting you have a problem is the first and hardest step and I am now waiting for counselling but Tony and I talk things through more then we did before. 

I wish now that I had taken that first date (he actually offered me 3 in that appointment. I know I have bought this on myself but I wasn't even two months post op then and it all felt a bit too much) but I didn't and now it's my turn to live with the fallout. The symptoms are pretty awful to be honest. First there is the fact I am solid food intolerant again, then there's the horrendous spasms that will only ease if I sit on the toilet but by sitting on the toilet it triggers terrible back pain and pins and needles like you wouldn't believe in my legs!

Following on from those three symptoms there's the constant nausea that makes me feel like I have done a loop dee loop a thousand times. I also get headaches like I have never experienced in my life. Laying down in a dark room does nothing to touch these bad boys! 

I suppose the most embarrassing would be the raging fevers that strike at any time. I can be listening to a child read at school (where I go in if I am well enough for an afternoon or two a week) and from nowhere be sweating buckets. I have had to start carrying a hanky with me because if I don't dab my forehead it will literally drip down my nose!! 

 

It's also causing my joint pain to go crackers. I never knew the colon could be responsible for so much. Certainly not an increase in joint pain but indeed it does. (thanks to the NHS website for that nugget of information) I wake many days and feel like I have the flu. It really is pretty rotten. I talk with Tony about everything but I haven't really got anyone else to talk to. I don't want to upset my family, they have already been through so much with me that constantly complaining about my new rack of symptoms isn't going to help anybody else. 

I think generally people simply don't know how ill I am. Obviously apart from my family no one else sees the illness. It's just there, a part of my life that is hidden below foundation, good blusher and a dollop of mascara and of course a great big smile. 

My doctor explained to me that he is going to organise a nurse to come out to the house to show me how to use a disposable catheter as I've lost control of my bladder. (I know right, good times!) Possibly it's because of my colon but in a nutshell my bladder has over stretched which means it holds way too much liquid (which is exactly what happened to my colon and caused it to eventually fail) I use to be able to push down on my stomach to release the floods but now even that doesn't work very often meaning I am getting more and more and more uncomfortable and have to visit the bathroom every 30 minutes or so in a desperate bid to release it but to no avail.

So as you can see the colon has to go! I'm not sad about having to have a bag for the rest of my life but the idea of the operation itself, it's always nevre wracking going for surgery but this one feels bigger then the others. 

There is no way we could afford to have it done privately which would make me feel so much more relaxed about the wrong thing but the surgeon has said if we could afford it then he would be happy to do the surgery in the NHS hospital and then have me transferred to the private hospital for the recovery. I have had nothing but traumatic experiences with my local hospital. They are so stretched for good nursing staff that if you go in as a disabled patient or have complex medical needs on top of the reason you are in hospital they just cannot cope with it. 

The private hospital was just amazing when I had my last surgery, on top of having my own room Tony was allowed to stay with me day or night if I needed him and when I started to get very unwell with the infection the staff were 100% on top of it. They also really took in how much pain I was in without brushing it aside. When I've complained of pain in the past in NHS hospitals I've been told either it's in my mind (totally not true) or that there is nothing they can do and then ignored me and quite literally pulled the curtain around. I've also been passed a bloody tissue from under my bed and been told to put it in the bin myself when I pointed out it wasn't actually my bloody tissue. I've slept in bedding with stains and holes in and been left without water when Tony wasn't around to fill up my jug. I've never had problems with doctors or hospitals but I am terrified of staying in an NHS hospital after this op. The ill treatment of patients is terrible and I don't want to get an infection like last time and not come through it this time because it isn't picked up in time or taken seriously. I am sure this all sounds perfectly ridiculous to most but for me it's all about peace of mind and being in the best possible surroundings so I can make a full recovery as quickly as possible. 

Like I say, the colon has to go. I need to take a deep breath and put it in God's hands. Everything will work out. 

I hope!     

If you would like to donate to our gofundme page created by a friend of our family please click the link and it will take you directly to our page.  http://www.gofundme.com/foroursongbird 

Where we are...

So we're three weeks into the holidays and we are having the best time. I must admit I was worried I was setting myself up for disappointment. I had so much I wanted to do with Amelia-Rose during the holidays but wasn't sure if I would ever be well enough to do it all!

So far so good though! I must admit I can't say I am doing a great job at pacing myself but I am trying to learn! I seem to be in that place where I go go go go go and then I crash which is something I must 'un learn', at least I am aware of it though and am trying to do something about it!

I am finding the only time I have to sit and write is when I am absolutely exhausted (like now) which sort of sucks but I do write when I can! I have an article that I have to edit and I need a good chunk of time do it but finding that time (again when I have the energy) is near on impossible!

My Youtube channel is getting some great feedback which is incredible. I never expected it to be so well received and have been blown away by people's honesty if they leave a comment or send me a message! It's amazing how when you're really deeply honest people feel content to respond with honesty.

It's a really scary thing to be honest and put yourself 'out there' and I was terrified at the idea of making the step from blogger to vlogger but I couldn't get rid of this feeling that it was something I was meant to do. (Don't you just hate that feeling ;-) It's like a feeling of "No God!! Not me! Not now! Get someone else to do it! Ha! Obviously you might not get that if you don't believe in God though!)

Anywho, I have been filming and editing daily vlogs which I must admit I have grown to love. It is such an amazing way to record our lives because Lord knows how bad my memory is now! I love sitting and watching all the footage I recorded that day. I actually wish we had been doing it for years! I generally try to edit it into a film of 15 minutes or less for the sake of YouTube but I have all of this extra amazing footage 'just for us'.

I am digging deep and trying to 'be brave' in a way that I am normally rubbish at. In terms of doctors, procedures without sedation, hospital appointments and operations I generally think I am pretty darn brave but when it comes to putting myself sort of forward for stuff I am RUBBISH at 'being brave'. Being a singer and performer you may not believe that but honestly it's true.

The other day I happened across an amazing website that sells eco friendly and vegan make up. I've managed to find eye shadows etc but have struggled to find companies that sell 'the whole face' make up range, especially really nice bronzers and blushers. I browsed through the website and fell in love with it.

I thought how awesome it would be to review the products on my channel and decided to email the contact email and ask if I could. I guess I have a fear of rejection so doing things like that take a lot of courage for me but I went ahead and did it anyway. It turns out it was well worth it because I got the sweetest email back and they not only offered me an amazing discount but they also said that if I did review them they would also offer the readers of my blog and my YouTube channel viewers a 20% discount with a special code generated just for us!!

I ordered the make up at about 1am Thursday morning and they arrived Friday morning and I absolutely love them! I am going to write a proper review and film a tutorial and review with them to go along with the videos I made of my opening the package. I was so excited it was ridiculous! Honestly the silliest things make me excited!

The other 'brave' thing I did recently was to get in touch with a fellow YouTuber who I have been watching for a while. Her channel is called (and indeed she is called) dearmamasal and she VLOGS on her way to work everyday. The camera is set up on her dashboard and she talks about, well, life really!

I am a great believer in affirming people and wanted to message her to say 'good job' but I felt a bit shy! I eventually went ahead and did it anyway and again I got the sweetest email back. Not only that though she also shared a few of my videos with her viewers and we've exchanged message pretty much every other day or so since. I think she is one of the most like minded people that I have come across recently. Once again my 'being brave' was rewarded although this time with a new friend.

It's amazing what you get back if you put yourself out there.

I am deeply sorry but I am going to have to stop here and not go back and check/edit what I have written. I have the most awful headache and its making me feel quite sick. I really wanted to give you all a full update but I am going to have to stop writing and lay down in the dark. It's only 9.30 but because it's overcast and rainy its already dark outside.

Sorry for any spelling, grammar or just general 'that doesn't make sense' mistakes.

Blessings

C x x

http://youtu.be/2Wa_AviZvGQ (Check out the VLOG here!)

A gentle weekend

This weekend despite still feel rough as... Well, lets leave it as rough shall we! ;-) I have made an effort for Amelia-Rose's sake to get up and appear 'normal mum'. It didn't start too great as Friday night my insomnia kicked in and I got absolutely no sleep! It did mean though that by 7.30am my over tired hyper energy had kicked in and I decided to make hot cross buns! 'Normal' for me involves baking!

They were a real hit with everyone from my year old nephew to my husband!

Whilst I was waiting for the hot cross buns to prove I showed Amelia-Rose how to make a boat out of an egg box (thanks pinterest) and later when my nephews came over I showed my older nephew (age 3!) how to do it too.

Tony took Amelia-Rose to the local museum which is her favourite outing in our town. It closes in the winter and she really misses it! It's a shame because I think she would love to do that on her birthday! It's a good museum but it is fairly small, that doesn't bother Amelia-Rose though! The fact that it's free means she gets to go whenever she asks as long we we have a free day. Another local museum she love is the dinosaur museum but that's fairly pricey for what it is and is a 20 minute car ride away meaning they can't just pop in.

Today Amelia-Rose and I spent most the morning playing (for some of the time we had frustrating fun with her aqua beads!) then Tony took her to the supermarket to get a few bits then she went to church with my parents.

The last time I went to church was when I was embarassingly ended up doubled over in agony and being taken out by paramedics on a stretcher and started my two weeks in hospital. It will take a while to rebuild my confidence to go back.

In the evening we cleaned out our stick insects. We had them before but they all died. They only have a life span of 12 months and I got them to teach Amelia-Rose about the life cycle. You can't really get emotionally attached to a stick insect even if you are five. I had them as a teenager so know all about them. When they had all eventually died (they died over the course of a few months) I emptied the tank but left some eggs on the bottom thinking I would give it a proper clean out when I put the fish in there. Never in a million years did I think they would hatch!

A few weeks later when I was dusting I noticed 5 tiny baby insects in there with their eggs still attached!! We couldn't believe it! We put some privet in leaving the remaining eggs and the next time we looked there was 7, then 10!

Yesterday I noticed oddly there was a moth inside!! Today we cleaned them out all together and released the moth outside. We all had our jobs, I took the insects out and passed them to Amelia-Rose who put them in a tub and Tony watched the tub. They are quick little gits when they want to be! As I was taking the leafs out I found the moth's cacoon that we have saved so she can take it into school. We counted a staggering 18 insects!! All various sizes!

As the weather has been so.beautiful and my tulips are all in full bloom I took a turn about the garden (as Jane Austen characters would say! ) and plenty of beautiful albeit slightly abstract in some cases photos of the tulips.

I was excited to see some green shoots and buds on my apple tree. I bought it in October from the local garden centre when it was full of delicious apples. The poor thing is still in the pot I bought it in but Tony hasn't the time to get it in the ground. I don't bland him at all, with the amount he has on his plate it would be harsh of me to be cross about it! It's just a shame. I did get a quote from a guy but it felt a bit steep for our budget! Perhaps a local who reads my blog might like to come and dig it a hole ;-) ;-)

I'll put all the relevant pictures from the weekend below. All in all bar the insomnia and still feeling so horribly full and comfortable it's been a nice weekend. This week is operation Easter! Hopefully crafts galore! I had wanted to make Amelia-Rose an Easter countdown but I haven't been well enough. This week as we are in the spirit I am hoping to make it this week ready for next year.