Wednesday, 30 June 2010

Friday 11th June

I have Molly to myself this evening and it is the most beautiful evening in a long time.
Andy has gone back to Coventry to watch the England game so my friend collects Molly from nursery for me.
I explain to Molly she needs to be extra good and help me help her and she is a dream. She helps me in the kitchen make her dinner and offers to lay the table. Although to be honest this was a waste as we sat on the couch and watched scooby doo whilst eating dinner instead.
At 7.00pm Molly announced it was time for bed. We went upstairs and read a book and then Molly said night night. I made my way down stairs and did not hear a peep out of her.
I am so proud that even after all the changes to what routine we did have my lovely lady knows how to behave to help her mum.

Friday, 25 June 2010

June - I month on

The first few weeks in June fly by. After the initial dreadfulness of being home and the loneliest of being home but down stairs has warn off.
We are in much more of a routine and friends and visitors come and go and its fun. I can hear myself laughing and I like the sound of it.

I still struggle when other children are around, the noise for some reason really bothers me where it never did before and I have no patience for them other than for Molly.
Molly has been terrific. She has been passed from pillar to post for 2 months nearly and hardly seems to let it effect her. She had so much fun playing at peoples houses there for a while. Now sadly though she doesn't want to, and has decided to spend one day with mummy and 4 days in nursery. I guess she craves the structure nursery offers her.
I have lost over two and half stone since this all began. From the first day I was weighed by the surgeon in Eastbourne til now.  I still have a way to go to lose another stone to get back to what I was when I had Molly.
Even being in the wheelchair to go out shopping is not so embarrassing and I look forward to Sundays - going to church in the morning and spending the afternoon in town. We go for cake in Starbucks and then buy some clothes or bits before wandering home.

21 DPO - 29/30/31 st May

It has rained for the past few days and many days nights have merged into one
I am alone so much more that I am home that I can't cope with this feeling. I don't want people to pop in and leave me as I feel so much lonelier when they are gone.
I am wishing this week away and praying that by next week the withdrawal will have ended.

18 DPO - 28th May

I cry on everyone and anyone who calls or pops in to see me.
I can't control this and I am so frightened. I want to go back into hospital this can't be right this is not how it was meant to be. The pain is unbearable but this dispair and tears is too much.
When a good friend phones she recognises immediately the withdrawal symptoms not only from the pain killers but from being institutionalised. She takes control and phones the doctors for me who change my medication strength so the withdrawal is not so intense.
Its not even sad things that make me cry, its a disgusting self pity crying that I hate to allow flow. I dont want to let it out because the hurt feels like I should be punished.

This evening is much better, Andy and Molly sit and eat on my bed with me and molly falls asleep next to me. It is going to get better but I fear this is the hardest part now.

17 DPO - 27th May 2010

Okay I going home this is the big day we have been working towards.... excited?...no, happy?......no
What is wrong with me? Why am I crying about this?
I should want to go home but I am scared, tired and oh so suffering from the withdrawal.
When the discharge nurse asks what time I want the ambulance to arrive I cry! I could have had the ambulance transfer home after all. Why did no one tell me this? Andy is a few miles away from the hospital there is no way I am not going home in his car now!
The discharge nurse seems very patient with my tears and tantrums though. I go and give my special friend a hug and kiss and she promises to write to me. She seems so vulnerable and I don't want to leave her. I have some good friends here now and it feels like I have been asked to leave the holiday early. I can't quite explain it right.
When we get home I burst into tears, I warn Andy I can't control them and don't understand them. Everything feels like such an anti climax and a disappointment.

16 DPO - 26th May 2010

I have been awake all night, literally.I went to the toilet at 4 and then fell over too which makes everything worse. My pelvis really hurts but I don't think from the fall particularly although my wrist really huts from that. I see the night doctor who suggests an a ray after ward rounds.

When the surgeon arrives I am terrified he will shout at me! Have I ruined his hard work? He is nice, and looks at my wrist too. He suspects I have fractured a small bone in the wrist and asks for a splint to be worn. At least the pain is not too much of a shock after what I have been through.
I am not going home today after all but definitely tomorrow.
I spend the entire afternoon crying on bed, I keep pulling the curtains round to hide me but some nurse or other keeps pulling them back. The day is like a bad comedy I can't even describe it.
I want Andy to come and get me now and take me away from this place.

15 DPO - 25th May 2010

This morning we tackle some steps. I am not kidding you I stopped and cryed with the pain. this can't be right. People can't be expected to do this it seems so inhumane. This hurts so much how can it help? Why won't they just leave me alone? I don't feel ready I am scared. I can't deal with this pain at home alone what is happening?
And then it hits me, withdrawal?
I am being taken off the morphine whether I like it or not and its replaced with a lower dose opiate based pain relief that is given only 2 times a day.  My mood dives and I know it.
This afternoon it gets worse. We get word that one of the patients moved out of our bay before I arrived into a private ward died in her room last night. The fear and the sadness is unbelievable. I never met this lady but her death seems so unfair. This is just an orthopaedic ward how can someone die?
To make it worse, my dear and beautiful friend is terrified now of her operation in the morning, And then the drama really begins.
It appears our little princess does not want to go home and her mother refuses to take her. They want her to stay in? I'm sorry what? why? Because they think they are being mistreated, she has not been here as long as some patients - ie me per chance? After the police are called and threaten to arrest them they sulk around for another hour and then quietly leave - no goodbyes or thank yous just waltz off thinking the world owes them a favour.

14 DPO - 24th May 2010

The start of a new week and I am walking much better. I can get to the toilet with the physio with one stop. I have to try again later this afternoon and then can look at going home Wednesday. It has already been decided it wont be tomorrow.
But tomorrow I plan to walk back and forth to the toilet and prove I guess to myself that I can do this. I have come so far already I need to be able to focus on carrying on.
There is a lovely lady on the ward with a badly broken elbow who has been willing me on from her bed all last week. She is waiting to have surgery and has already been in a week the poor love. She has such a smile that is so beautiful and lights up the ward I feel my spirits lift after talking with her.

13 DPO - 23rd May 2010

Urgh day!
I want to go home I miss Molly and Andy so much I am struggling to breath.
I spend a lot of time asleep - or pretending to sleep because I just can't face the chat of the patients and visitors.
Its days like today that I wish I was nearer home.

12 DPO - 22nd May 2010

All day I am focused on Molly and Andy coming. I wear my nicest pyjamas and check I am looking as good as I can.
When they arrive you can here Molly chatting all the way up the corridor and its lovely. I can't believe I have lived without her for so long.
We go down for coffee again and this time sit outside in the sunshine, I know I will be home next week and I am feeling so excited about it.
Molly chats and laughs and generally seems totally oblivious to what she has had to go through!
At tea time they go down to the cafe and leave me to have tea in the ward, as soon as they are gone I cry and want them back. What am I doing sitting in the ward, I could have gone with them. Andy phone is just going straight to voice mail I am gutted.
When they return I am so tired and sleepy. Molly and I lay on he bed for ages just chatting rubbish and playing eye spy. I hope this has all been worth this.

11 DPO - 21st May 2010

Today I manage to walk around the bed with no stops. I have had a rough couple of days and spend a lot of time after having done a little walk laying down with ice on my crotch! I asked the physio for some phallic shaped ice but it was not to be!
Now as it is Friday I am aiming to be home Tuesday! That seems a much more likely goal although still incredibly scary!

10 DPO - 20th May 2010

Oh what a night! Well the ibuprofen do help but there is no way I can give up the morphine yet.
I wait as long as I can all day before asking for my next dose.

9 DPO - 19th May 2010

This morning I am woken early as usual with the normal routine checks and told again that the INR result is still very poor they are considering a transfusion. I don't know what this means but as it is only a possibility I decide to ignore it on go with what I know.
Our lovely nurse was on last night and he gives out our pain meds before the next shift start at 8.30 so at least I an get up and wash as soon as I like rather than waiting for the nurses to have time to help after hand over.
This afternoon I meet the pain team who give me some other pain killers on top of what I am taking. Now there advice is to take more, stick to taking the morphine too and that getting on top of the pain first is more important then trying to get home. I feel caught between 2 sides because I am sure the surgical and physio team would prefer me to cut back on the pain relief?
I feel a little down about all the confusion.

8 DPO - 18th May 2010

Today is the start of a definite plan to get home. I need to be able to stay off the morphine for 24 hrs before they will let me home. So the first day I skip that voluntarily I know I have a high chance of being allowed out the next day. At the moment it feels like a goal that's so far away but one step at a time
I manage with the physio to walk the distance around my bed and get in from the other side. It takes 2 stops to achieve this which seems a lot but the plan is tomorrow it would take none. The improvement from day to day now should be much more noticeable if I can control the pain!

This evening we have a new patient on the ward. A young girl has come in for a hip operation. Her family are treating her like a real princess, I am not sure if I am jealous or something else but it is making queasy how much attention her mum is lavishing on her.

Friday, 18 June 2010

7 DPO - 17th May 2010

Well its the beginning of a new week!
I am looking forward to seeing the physio as we are going to try and take a few steps.
I make sure to eat breakfast - slice of bread and jam and a strong cup of tea and shuffle into the chair for a wash! Whilst I am washing myself in marches the team of doctors! Thankfully my surgeons registrar offers to come back at a more appropriate time. I think the surgeon would have just carried on - well I suppose he has seen it all before. But he wasn't my surgeon so I was uncomfortable. A minute later they come back. They can't hide the fact they are concerned that I have not been able to walk yet. The nurse explains its not just the pain but the low blood pressure but they say not to worry. The plan is to aim to be home maybe Wednesday and under community physio and nurse instead.
After I am dressed my physios arrive to help me walk. I am able to stand with the frame but cant lift either leg. They are just sort of dragged along. The left leg is considerably weaker. After 3 steps my legs begin to shake, I am worried as it looks so shockingly like a much older person trying to walk. Especially given the fact I am using a frame. I collapse into the chair and can't hide the stinging tears in my eyes. The physio tells me I have done well, she explains my muscles would have started to deteriorate and I need to build up my strength. I don't get a gold star but she does draw a smiley face on the board above my bed which describes what care I require.
After this I need to wash and change again - it appears that having surgery on your pelvis requires the surgeon to move the bladder out of the way which can affect it temporarily during recovery. Another thing that I don't remember seeing mentioned anywhere! Embarrassing it may be but they are certainly used to it. A lovely HCA gathers up all my worn pj's and offers to wash and dry them for me.
I spend the rest of the day relaxing on the bed and chatting to the other patients. One of the ladies who has been here the whole time I have is going home with her new knee today. She was a fiesty bugger that the doctors did not argue with! She instructs the nurses and other patients to look after me and promises to phone to see how we all are.
Its strangely sad to see someone go. Even though its obviously good that she is well and on her way home, we have all started to really bond. We are all in similar situations but with vastly different lives.

Thursday, 17 June 2010

6 DPO - 16th May 2010

Today I am tired, cranky sore and cranky - have I said cranky already?
I feel exhausted, I think yesterday took it out of me. It was such a long day and I didn't nap while the family were here. It was definitely worth it, but I am paying for it.
After a breakfast of the usual jam and bread, I push the boat out and have a coffee instead of a tea. There are no physios in today so it is up to me to make sure I move from bed to chair safely. I am not able to walk around or anything yet but I can shuffle into my chair.
After having a wash in the chair I start to feel really unwell. The nurse comes to check me and tells me I am hot, my BP is way too low and that my heart rate is now high. I don't understand what any of this means but am put back into bed.
Four hours later I waken. Thankfully the lovely lady that pushes the tea trolley has stopped at me bed and woken me. She tells me I have slept through lunch but would I like some tea and cake. And I would, and it is lovely. I feel much better - whether it was the sleep or the cake I don't know! But I am very grateful for the tea lady.

Wednesday, 16 June 2010

5 DPO - 15th May 2010

Today is going to be a good day! I am definitely having the catheter removed and Molly and Andy will be visiting this afternoon.
At about 10.30 the nurse comes to finally remove my bag of wee. I am relieved (tee hee) that is doesn't hurt. They just deflate a little balloon that held it all in place and out comes the tube. Done. Would have been a whole lot easier if I wasn't having to give repeated directions to hubby on where to take Molly for her ballet lesson mind! Why don't they just go where you tell them and park where you tell them? I am giving directions from a car park that I have never even heard of! Anyway enough of my incredible multi tasking. Where's that shower so I can look super lovely for my visitors I really would like to wash my hair.
After lunch the shower is out of the question - I am too knackered. Unbelievable but sitting in chair can really wear you out you know.
Instead I chose to change in to some pyjamas instead - now I don't have to carry around that damn bag pj's are much easier to wear.
At 2.00 the family arrive and we enjoy a fabulous afternoon in the coffee shop and buy me a few snacks from the M&S shop. Molly is looking stunning and seems very happy and well looked after. Andy looks a little tired, and a little fed up. We talk about me coming home on maybe Tuesday/Wednesday but that doesn't seem to cheer him up. Maybe he is worried about looking after me at home?
By 7 its time for them to go, I am really exhausted and in quite a lot of pain. I have a few tears when they leave and try not to cry in front of them. I am literally choking though and feel like I have swallowed a golf ball.
I lay back and listen to some music for a while whilst I look through the many get well soon cards Molly has made me.
Overnight I get worse, the pain is unbearable and I am struggling to sleep. The nurses check our BP's again and again mine has dipped.. I am warned I may need a blood transfusion at some point and that they will monitor it for next few days. With another dose of morphine I am in the land of nod.

Tuesday, 15 June 2010

4 DPO - 14th May 2010

This is my lowest day so far, I have been up so much in the night with the pain. A new lady is due to go down to theatre this morning for a hip replacement. She has already had several other similar surgeries. I begin to worry that maybe mine hasn't worked and I will be back in here in the future too. Maybe that is why I am so much pain still?
When the physio arrives we talk about my going home - it won't be until next week and only if I can walk to and from the bathroom unaided several times in a day. I am happy this is the goal. Although I am disappointed that I also have to sit in a chair for 3 hours to make sure that I can cope with the journey home. It appears the hospital are not going to offer me transport home as previously suggested.
I also still have my catheter firmly in place and attached to my walking frame - which I can now use to get from bed to chair. I ask every nurse today if they can remove it and the answer is always later.
This afternoons checks show I have a temperature and low blood pressure. It has always been fairly low but it seems to have dropped a bit today. The doctor comes and tells me they hope its just because I am getting used to moving after being still for so long and nothing more serious.
This evening I feel a little better, the sun setting has turned the sky a beautiful red and the view over London actually looks quite nice this evening maybe that's just all the morphine?

3 DPO - 13th May 2010

Well oddly enough I am in ground hog day, I am again awoken far too early and nearly crying for morphine until a kind nurse arranges the morphine and a cup of tea! I am so grateful for that lady whoever you are.
At 8.00 along comes the breakfast trolley, I decline the porridge and try some bread and jam instead. My Molly would love this for breakfast, the thought of her today has me in tears. I think its because I was so expecting to see her last night. I listen back to the videos we recorded on the way to hospital on Monday - me and molly destroying some song on the radio! If I can work out how I shall add it on to here in the future.
By lunch time I am moved on to the orthopaedic ward. I am in bed 4. I listen as the nurses go past and refer to all the patients as their bed number - it feels a bit like prison - only the food is worse here.
My new bed is a dream! Honestly! I have an air mattress now that constantly moves ever so slightly to stop you getting sores. I also have a monkey bar over the bed which I will learn to use to sit up unaided and some bed bars that I am taught how to manoeuvre myself up the bed. What a difference being on this ward has made to me already.
The physio arrives late afternoon and I finally get from bed to chair. I ask her when I can have the catheter removed? Although its nice not worrying about getting to the loo on time it is getting rather annoying carrying a bag of wee with you!
I am told I have to 'open my bowels' first. I then have this discussion with a nurse who tells me I need to 'open my bowels' today. Well I don't know about you but I am not one for doing this on demand. Its funny how everyone acts like they are whispering this phrase - but actually draw more attention to it and end up shouting it instead. Now this o longer bothers me, the entire ward is in the same boat. Everyone has had lower limb surgery in here and are more than willing to put there opinion on the whole bowl movement subject. In the end I had no choice, after laughing along to one woman's tale of opening her bowels a teeny tiny nurse whirls in, whips the curtain shut and has me on my side suppositories inserted before I can even mutter bowels open. Job done. I am told she will be back in 30 minutes where she will wheel me to the toilet in time! She blooming better!

2 DPO - 12th May 2010

Today starts exactly the same as yesterday, awoken very early for checks and tests and then waiting around until 8.00am for some breakfast to arrive.
Luckily there is a nice nurse on the ward who offers to get me some tea from the kitchen as she has noticed I can't do anything for myself.
I really enjoy that cup of tea. The porridge however I can only manage a few mouth fulls again.
Around mid morning again the physio returns. This time with a rather large frame that would allow me to stand up and lean on it with the full length of my arm from able to wrist.
The aim today is to get up from the bed and stand.... the reality is I nearly faint just moving from lying down to sitting on the edge of the bed. The room is spinning and I so want to throw up. After deep breathes I manage to keep down the porridge and allowed to rest. She will be back later with someone else to help.
Straight after the surgeon arrives, he tells me how pleased he is with how I did and that the operation went really well. He does suggest though that I am not recovering as well as he would have hoped - probably due to how long I had spd for before surgery and that once a bed is found in the orthopaedic ward I will be moved there and kept in over the weekend. I am not really disappointed. I know I am struggling and could not manage at home like this, so the best place is to be here.
This afternoon I am taken down to X ray - thank fully this is done over lunch time so I don't have to worry about refusing that meal. The guys in x ray are great and manage to move me from my bed to the x ray table without hurting me at all. I tell them they need to teach the porters and the staff on the ward that trick!
After the x ray I am left in the waiting room of A and E with everyone walking past my bed having a good old stare at me. I feel like i am on show. Maybe it is the great big bag of urine hanging from the end of my bed!!
Once back on the ward the lovely nurse from this morning comes over and tells me I have a urine infection and that I am to be put on another drip of antibiotics as well as the one I already have in. To be honest it feels like no big deal considering what I have already gone through. They can stick 20 cannula's in my arms for all I care.
Tea time is a jacket potato, I am grateful I can eat almost half of it. That gives me enough strength to be able sit up again when the physio returns. She says though that she is going to take my frame up to the orthopaedic ward where I can reunited with it tomorrow. She doesn't want me tempted into going for a walk on my own - seriously she has no worries there!
As night falls another nurse and a new young male trainee arrive to give me the pleasure of a bed bath. Urm - can I say no? Apparently not! So I am shuffled back and forth from side to side and scrubbed and changed into my own nightwear - which to be honest feels very nice indeed. I feel clean and have a clean nightie on. I am pleased because Andy and Molly should be here very soon. They were leaving home at 4.30. No sooner thought then my phone rings, they have been stuck in traffic for 3 hours now, I decide they should go home as Molly has already fallen asleep. I tell Andy that I am to be kept in over the weekend anyway so they can come and spend some time with me on Saturday instead.
A couple of other ladies on the ward talk to me tonight. They feel sorry for me for having no visitors! I don't mind, we chat and compare notes on the staff and all get to tell our horror stories of surgery. I win on the comparing wounds front - the one which I can show them is across the left side of my stomach - it looks worse than it is because of the staples. The other wound is too low down  to show someone I have only just met.

1 DPO - 11th May 2010

I day post operation!

Crikey why don't they let you sleep. At 6.00 I am awoken again for more BP checks and temperature checks. I am still on the oxygen but they have thankfully removed the mask and given the little thing that pokes up your nose.
During the night when they do these checks I normally get more pain relief and can go back to sleep but at 6.00am it appears everyone wakes up. Which is rather foolish as breakfast is another 2 hours away what is everyone going to do?
I switch on my TV and wonder if I can face some toast. At 8.00am I discover that even if I could eat I can't because toast is not on the menu,instead I am given some porridge. 2 mouth fulls is enough and then I feel sick.
The physio arrives mid morning with a pair of crutches, if I could I would laugh. There is no way she is getting me on them! Instead we try to work out a way to get me to sit up. Its harder then you would think!
Eventually I am helped on to my side and half lifted into a seating position, as she moves my legs off the bed the pain is unbearable and I promptly part with the 2 mouth fulls of porridge. It looks a lot more splattered on the floor.
I apologise but I get the impression that's not the worst bodily fluid that's missed her shoes.
I am allowed to lay back down and informed that I feel sick because of the drugs and the fact I have been lying flat for so long.
The rest of the day passes in a blur. By tea time I am quite ready for some food. Until it arrives, and I decide that maybe I will give it a miss until tomorrow. After all its only been one day!

Friday, 4 June 2010

Day 0 - Day of the operation

I was so so tired this morning.  I woke up at 4, (although pretty sure I had not actually been to sleep at all) and quietly dressed and checked my many lists of things to do, things to pack and lists for Andy and Molly to do whilst I was away.
Once the car was loaded and warmed Andy scooped Molly up and into her car seat too. The plan was for her to stay asleep until we reached the hospital. However she was suddenly wide awake before we got off the drive and I was secretly pleased for the distraction.
Once at the hospital we parked and changed Molly out of pj's and into some clothes.  We made our way slowly to the surgical admissions lounge and waited with all the others for the doors to open at 7
Thankfully I was seen rather quickly, I was assessed by the surgical team and the surgeons registrar and we were all happy to proceed. Later the anaesthetist came over and said I would be taken down in an hour or so. I was changed into a hospital gown and some rather fetching TED stockings to prevent DVT.
Molly and Andy spent most of the morning slipping in and out of the lounge to eat - they were not allowed to eat in front of people waiting for surgery.
When I said goodbye to Molly I was scared, I tried to take a memory picture of exactly how she looked, the smell of her hair and skin and the sound of her voice. I had to turn away before she saw me cry. Andy took control and led her away.
Waiting outside the operating theatre I was so tempted to run. But realising that I couldn't and that was part of the reason I was there in the first place I stayed put and said a few silent prayers asking for strength.
Once inside a small room and on a small table I was given a not so small cannula in the back of my hand, the lady talked to me as she put some liquid through the cannula - to be honest I thought she was washing it out, she never said this was it. That was the last thing I remember!
Five hours later in the recovery room I remember a lovely nurse talking to me, telling me it was all over and that the surgeon was really pleased with how the operation had went. All I could see and hear were bleeping machines, the whir of the oxygen - (why was I wearing an oxygen mask?) and tubes and leads coming out of both hands now.
A little later I was wheeled up to the surgical ward, I could see Molly and Andy on chairs outside, I was so happy to see and hear them chatting away. Once at the ward I was asked to move from one bed to another. I was dumbstruck, I knew I was not supposed to move. They kept insisting I needed to move, I had barely the strength to speak and then they finally asked what operation I had. I could have cried, this was not how it was meant to be! After trying to shuffle and crying with pain and effort they finally pulled back the covers and I guess realised this was not up to me to get from one bed to another. A sliding board was eventually found and I was tucked up in bed.
Andy and Molly then came in and all the anger then was forgotten, I was so happy to see them. Molly looked a little worried so we tried to reassure her that everything was fine and mummy was okay. After some small talk and Andy sorting out my TV for me they were off. I felt a little sad to be left behind but the morphine soon took care of that. It had been a long old day and I was ready to catch up on some serious sleep.
Unfortunately I was woken every hour to have my blood pressure checked, given more medication or to have the catheter emptied. It was going to take a while to catch up on that sleep!