Tuesday 31 May 2011

part 2

It is now 8 days since the amputation and every day gets a little better.

I am trying to set goals for everyday, nothing major just little things. Such as getting ready, using the commode in over the toilet, washing my hair, getting some sleep, staying in the wheelchair for so long etc.

So far so good ! this morning I have managed to do my excersises, get clothes on , have a bed bath (this sucks btw) and wash my hair.
I am slightly concerned though as my left stump seems to be more swollen then the right . However this may be nothing but there is no point going to the GP as they will just refer me back to the surgeon anyway, and the appointment should be through soon. Really don't know what to do for the best on this one.

Spoke to the GP today and have sorted out my sick note and some stronger meds.  He is given me a prescription for Tramadol so fingers crossed it will help control the pain and I will only need them for  a short period of time. Have also spoke to Sunderland Council concerning direct payments and assessment for help in the house so they are getting a duty social worker to ring me on Thursday to assess the help I need and equipment I may need.  Although it is mind boggling to know how they will assess me for the equipment over the phone?

I have also spoke to the DLA concerning my care needs now and they are sending out a pack for me to claim higher rate care. Starting to notice that my fitness levels are increasing which is good, transferring doesn't seem such an ordeal any more but is still very exhausting. Getting used to walking up the bed with my bum to sit upright in the mornings as am having to use 4 large cushions off the couch to enable me to sleep on a night ( this means I can sleep slightly propped up in bed, stops my back from hurting too much, still not ideal).

My aim is too get back to work, from home, by the end of June. Actually getting into the office may not happen until the end of September or later. I am also hoping to restart the OU work I was doing over the summer, but just to stop me going crazy am trying to promote my husbands business through social media, marketing and PR.

My goals for the rest of the week is paint nails tomorrow and get kids breakfast on my own, Thursday go to do my shop at Asda and Friday go to town with David to pay bills and do some shopping.  At some point I want to go to the pictures as well and save up for a shopping trip to the Metro Centre, but these are things to look forward too.

Remember there is always some one worse then you in the world, stay positive and take little steps/set little goals. 

Saturday 28 May 2011

they think its all over now......

Well am now 5 days post operation.

Went in on the morning of Monday 23rd May. By 10.30am I was sitting in theatre being prepared for a spinal block with sedation.They have changed the system a lot since the last time I was in for an amputation.  This time I had to report to the day unit.  Of course this was me and easier said then done. You would have thought that the receptionist in the main part of the hospital would know where this was...ooh no !!

so after 45 mins of running all over the hospital we finally found where we needed to be. David wasn't allowed to stay with me which upset me as the last time he was able to walk with me to theatre. From the day unit I was taking to another waiting room upstairs with lots of other nervous looking people all with over night bags. After about 5 mins I was then taking around the corner to a ward area where all the forms where gone through and they checked what time I had last eaten and drank as well as making sure that I had removed all jewellery, make up and nail varnish.  After  this I was then moved to a single room on my own containing a toilet and a telly.  Here I met the anaesthetist who discussed how things where going to be done.  although it had been decided to go with  a general anaesthetic we both agreed that if we could get away with it to go for a spinal block and heavy sedation.  The bed in ICU was booked as a precaution just in case we had to rethink things half way through. I was then presented with a wonderful looking hospital gown and green foam covers for my shoes.  At  this point my surgeon came in to discuss what was going to  take place.  Once he had finished discussing the operation he asked me if I had any other questions, all I could think of was I wanted a hat like his funky green one!! Bless him, I don't know who is dafter but he came and give me one just before surgery !!!

I had a lot of mixed feelings at this point and really wanted David to be there.  From this little room after 10 mins I was taken to what they referred to as the "holding bay". this was a waiting room that had once been a staff room by the looks of things right next door to the theatres themselves.  After a further 10 mins I was then met by some one else who went through my paper work again, drew arrows on my legs ( this never stops being a source of amusement to me ) and walked me to the theatre. I have to be honest the phrase that sprang to mind was 'dead man walking'.

There was no way out at this point and I tried very hard to stay positive and keep my sense of humour. To the  annoyance of most of the medical staff I think!  snippets included when one of the sensors fell off and the heart machine reacted, my comment was " omg I have flat-lined" and " look every one was right I don't have a heart".  My last thought as I went to sleep with the sedation was of my eldest doing 'graceful ballerina' if you ever meet him or get the  chance you will have to ask him about that lol.


The next thing am aware of as the sedation made me sleep all the way through was being woken in the recovery room at 3pm, too which i asked for another 5 minutes.  As they where assessing my pain I ended up in a conversation with the nurse regarding Camden market and the Mayfair as well as trying to convince one of the male nurses to do a McDonald run....I was starving. After 20 mins I was then transferred onto the ward  Where it was commented on how well I looked and how alert I was considering, all I cared about was when was tea.  Needless to say not long after that I was given roast pork mash and veg and was very happy.

The new stumps are all bandaged up with what is called compression bandages.  I have been told these need to stay on for 3 weeks.  Looking at my legs now they don't look that much different. The biggest shocker for me is being back in a wheelchair.  I forgot how much effort went into transferring and how much i depended on my lower limbs for simple things like moving up the bed or repositioning myself on the settee ( you try laying flat on your back and without using you're legs or feet move into a sitting position up the bed).

I have also discovered much to my dismay that I am extremely unfit! Couldn't get on line in the hospital so couldn't blog but as you have more then likely guessed it was boring. Spent the 5 days in there flat on my back not being able to get out of bed or even change position to sleep.  The pain killers slowly came down in strength until am now using paracetamol and codeine, but being honest I think they need to take a step back up as I am finding now that i am out of bed the pain has increased.  I started my physo on day 2 with knee exercises to try and stop my tendons from shortening or wasting away.  By day 4 I had moved on to leg raises and a bastardised version of Thai Chi.  I would have been out of hospital on day 3 but the hold up was waiting on my wheelchair from OT as i need one that is anti tipping with stump boards.


Between you and me am not coping very well.  I got no sleep last night ( first night at home) as i couldn't get comfortable in bed, the duvet seemed to heavy and my back hurt ( in hospital I had been sleeping at a slight angle) transferring was a pain in and out of it so i spent most of the night in tears. And that has continued mostly on and off during today, my first full day at home and I have been in tears at least 4 times for various reasons, pain, frustration and temper being the prime ones.  Although saying that transffering is getting easier or so it seems and i have not felt sorry for my self ......yet......lets see what tomorrow brings eh?

Friday 20 May 2011

2 days to go

well its the early hours of Saturday morning and its my birthday.

so apart from the world coming to an end what else is happening? I hear you shout!

Well Its only 2 more sleeps before I go into hospital and I am petrified!!  Still doing the decolonistion thingy and now have started the hormone tablets as well. Everything bought in for the hospital just need a dongle now which david is going to get for me later on as for the first few days I will more then likely not know who I am never mind where I am.

Its Jennifers getting leg less party tonight, but really don't feel in the mood any more.  David reckons I will be fine and that I have just got myself a little wound up and a little down about going in on Monday.  Hes probably right.

Rang the hospital tonight to confirm everything and my admission time on Monday, its all in place and I am a morning admission 8am so I wont even get to see the kids off to school.

That's something else that is killing me as well, leaving the kids mainly the younger ones to be honest.  Eden who is 5 had me blaring my eyes out yesterday. She has been acting out lately and we think it is linked to me going into hospital. I pulled her to one side and told her that I needed her to be strong as she would have to supervise the eldest two and help daddy whilst I was in hospital.  She started to get teary eyed then her lip wobbled and she burs in to floods of tears !!
"mammy please don't go into hospital, I don't want you to go into hospital" I tried to explain to her whilst trying to hold back floods of tears my  self , telling her that I could do a lot more things with her once I  had new legs to which she replied that I didn't need new legs and it was alright I could just sit in my wheelchair as daddy would push me and I could sit and watch her play in the park! - what do you say to that?

That really hit me where it hurt!


Wednesday 18 May 2011

Update

well mixed feelings and emotions right now.  Started the decolonisation today so that has brought things home to me a bit more. What a carry on though.

Had a shower using the sterile lints.  Then had to put this foam on my body and my hair.  I have to do that  every morning now until I go in on Monday. Then it was the mouthwash, it was disgusting!! I have to gargle with this twice a day. Next was the turn of the nasal gel, now that was interesting.   3 times a day I have to put a dollop into each nostril  and pinch my nose together.  All this together should help to prevent me catching or kill any germs I could be  carrying of  MRSA when I have my operation.

I have also had Social Services on from the hospital checking on equipment that I will need for coming home.  This is a change as the last time we heard nothing from them and where left to sort everything out ourselves.  This involved fighting with the social services and OT to get the equipment we needed. The wheelchair with stump boards being the  hardest to get a hold of. At least this time we will have the wheelchair for me going into hospital or at least a couple of days after.  This fills me with more confidence then it did the last time.

Mood wise? I don't know really. I feel that I should be stressing or something but am not.  Maybe I am on the inside because I have noticed that this week I have become short tempered and I get irritable quicker. My patients seems to be none existing. But in my head I feel all non pulsed about it. Bizarre.

Trying to keep myself busy I have been trying to market David's Photography business.  And I have to dye his hair.  Not to be left out he is having a very good friend of ours dread his hair to look like Sephiroth!
To top all of this off there is the infamous "Jennifer getting legless party " on Saturday to celebrate my forth coming amputation and birthday.

Today I feel kind of flat.  I have tried to stay motivated and happy but the day has conspired against me am afraid and all I feel now is low, grumpy and bad tempered.


Sunday 15 May 2011

Can you believe it !!

Well here I am again and its one week to go!

Been to the hospital for my pre assessment and I think everything has went OK although I still have to have my ECG done. I have been prodded and poked all over, and swaps taken in places that no one should have a swap shoved !! But at least I know they are being thorough, it gives me some peace of mind.  When I was in nearly 5 years ago it was no where near as thorough. Some one took one vial of blood, they asked if you where on any medication and  they weighed you and took your blood pressure, then that was it .

Been told to stop taking the Vitamin's as the one to help my immune system and the one for the Arthritis in the knees as they cause issues with the anesthetic.  Also as from Wednesday I have to de contaminise my self its called skin decolonisation. Basically I have to have a shower every day for 5 days using this special shower gel that is also used on the hair, I have sterile individually wrapped clothes to use, mouth wash I have to use 3 times a day and nasal drops/spray that I have to squirt up my nose 3 times a day. lovely!I have also been advised that I will be in ICU for a couple of days after the operation as well.

I have to be honest and tell you that am now starting to get nervous.  I suppose its only natural, after all am only human (unless you are my kids who don't think so).  I miss work as sad as that sounds and am scared of how much things are going to change for me. The amount of time I will have off means that work will have changed as I will be out of the loop for so long. Things I do now and take for granted now will change again, socially things will change again there as I will have to build up my confidence all over again not to mention learning to walk again.

At the moment when I think about it and about the fact that it is only a week away, I get that knotted feeling in my stomach, that goes along with the butterflies you sometimes get.  I am going to try to fit a V log in soon and the morning of the operation before I leave am hoping to be able to sit here and let you know first hand what is going through my mind, am also planning a V log before I leave for the hospital and if possible one from the hospital.

On a lighter note some of you may be aware that I am now sporting a rather snazzy head full of colorful dreads . I cant wait to see the nursing staffs faces not to mention the doctors lol


Friday 6 May 2011

3 weeks to go and who's counting?

Sorry its been a while since I have actualy wrote anything but it has bee such a busy time for me lately.

I have been trying to tie all the lose ends up at where I work so that I could hand my clients files over. My last day was Thursday and I am now on holiday for 2 weeks until the operation on the 23rd.
However the  holiday isnt really happening. David took on a business unit for a portrait studio, so I have been helping him to market that place and set everything up so that it will run smoothly for him whilest am in hospital.  To say things have been manic is a understatement!! I had more sleep with 6 kids when they where teething then I have had in the last two weeks with this!
However saying that we have had some lucky breaks. David as done some thrash metal bands one local and one from Boston USA at and inside the Newcastle keep. They have been so impressed with his work that they are talking about using some of it for their next album cover. I was just happy I pulled off geting them inside the keep.
I also managed to get him as Outlast TheSun's official gig Photographer as they are performing one night only as Stiletto to support Tigertailz at the O2 Academy this month. So have also asked if it would be possible to photograph Tigertailz as well. They told me that they didnt see why not and to speak to the tour manager on the day !! so really happy about that as well. Still trying to get him in to do a shoot with Adam Ant but no joy...yet .

So because am busy I havnt had time to think about the upcoming operation. But now as it draws nearer I must admit when I do stop to think about it,like now when am writting this, I feel a little tripidation about it. Nerves I guess.
I allready feel wrong not being at work.
I have already started to pack my bag bit by bit. Buyin new Pjs and tolitries,books etc and putting them in my hospital bag ready. Still dont know what the hospital policy is on me taking my laptop in with a dongle so I can use the internet and Skype?
I plan to update this on a other day or daily basis as I get nearer to the date as well as keeping it going all the way through my hospital stay. I guess I want people to read this and take comfort, hope,inspiration and help from it, for people to understand what it is like to live day to day with this and for other people who may be disabled to be able to say "well if she can do it so can I"
I am lucky to have such a fantastic network of physical and on line friends ( you know who you are!), thank you all of you and a fantastic husband and kids which has enabled me to do what I do and has helped me to get over the bumps in the road.
My operation pre assesment is on Tuesday at 4pm, am sitting here thinking that the carefully planed diet and exercise programme didnt 'quite' work ! and am wondering how much weight I can lose in  a few days !!!
ooh well at least I am trying , and still trying, to lose weight.  It might not be a roaring success but I will fight the good fight. Hey at least I dont eat Pringles any more......just lots of other things instead.