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!     

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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.