Recovery

So I have now been out of hospital almost the same amount of time I was in hospital, and boy has this week gone faster?!  I am still relishing every second of not being in hospital and the fact I can sit and stand without being in intense pain, although I am drinking a lot of diet coke as every morning I seem to wake up with a headache and get worried it might develop further.

I can't get my head around how weak I have become though.  I have gone from walking 10 miles a day around Japan with no problem what so ever, to having trouble walking to the Community Centre and back and having to rest up in bed for about 3 hours afterwards to recover.  I had NO IDEA your body could pack up on you so quickly!  Everyone keeps telling me that I've had a big operation, that my body is in trauma and I need to listen to it etc etc.  I am, I have slowed down, I have spent countless number of hours in bed, but it doesn't stop me being amazed at how rubbish my body has become!!!!!

I think the menopause has started too, I am waking up in the middle of the night soaking with sweat.  Matt's already had to change the bed sheets, and I'm having to have showers in the morning as apparently "I honk!".  It's difficult to know for me whether I am having the sweats as reaction to the operation / trauma or whether it is the menopause.  I have always been susceptible to sweatiness and have had the odd night sweat anyway.  I think I will see how it goes and if it gets unbearable then get in touch with the Dr.  I did ask at the hospital about menopause, but they said they didn't have any information - I guess most of their patients have already been through it.

I'm also having trouble sleeping - I'm not that physically active during the day, so even though I am very tired when I go to bed, I am awake again around 2am (cold and sweaty) and find it very difficult to get back to sleep again, if I do then I'm awake before 6am.  I'm hoping better sleep will come once I'm a bit more active.

My appetite is appalling as well.  When I came out of hospital, it actually hurt to eat, I could feel food / drink going down my stomach in a way I have never done so before.  It literally took my breath away, but I didn't say anything to anyone at the hospital because I didn't want them to find a reason to keep me there.  As the week has gone on that pain has more or less gone and I'm even able to gulp drinks to an extent now.  However, food is not exciting me at all, not even my favourite snacks are exciting me.  I sit down to dinner to a sparrow's portion and struggle to get it in.  I think Tom and I are eating about the same at the moment.  My weight has plummeted so much that for the first time ever, I am now lighter than Matt!  I'm hoping that at some stage my appetite will get better, it is very strange not having an appetite - my life has always revolved around food!

Oh, one of the first things I did on the Sunday when I got home was ask Matt exactly what Nick Wood said to him on Monday after the operation.  Nick Wood did come to visit me on the Monday after the op, but I was so drugged up that I can't remember a thing he told me.  I obviously had plenty of opportunities to ask him later on during the week, but all I wanted to focus on was getting out of that hospital, not anything else.

So, apparently when he opened me up he found hundreds of cysts.  He took out my womb, cervix, ovaries, fallopian tubes, appendix and omentum.  The cysts didn't have thick mucus in them (the sign of pseudomyxoma peritonei), however the pattern of the cysts was in common with it.  So we are no closer to knowing really.  He did have to leave some cysts in me - they were by the liver and he isn't qualified to go into that area to remove them.  He said that it takes quite a while to get the results back because it is a complicated process to analyse everything.  I guess we will just have to wait.

Anyway, here is what happened this week:

Sunday
Sunday I got back home, it was fantastic to be home.  The journey back wasn't the most comfortable (mainly because I was wearing jeans and a belt) and I was glad when we finally got here, I had a huge smile on my face for the rest of the day.  My back did begin to ache big time though, which is what the anaesthetist said would happen.  Being elated about being out of hospital, I completely forgot about pain relief.  I went for a walk to see if I could ease the pain, no joy!  The sofa was uncomfortable (I could feel exactly where yesterday's epidural took place), the bar stools were uncomfortable, the kitchen chairs were uncomfortable.  I was wondering what to do with myself, when I finally realised that I hadn't taken any pain relief.  I loaded myself up: paracetamol, ibuprofen and the codeine the hospital gave me.  In half an hour I was fine again.  We had dinner: beef stew, green veg, potatoes and carrots, all very nice, but I realised that I have very little appetite and could only eat a very small portion.

Mum said that she couldn't eat after her hysterectomy either, so I was encouraged that it was normal.  I can feel all fluids and solids going down my side, it is very strange and a little concerning.

After dinner I was pretty much shot, Tom and I both went to bed at the same time.  I very much enjoyed being in my bed again - pure bliss.

Monday
I naively thought I could return back to normal life today.  We needed some veg, so me and Matt went to Booths in Kirkby Lonsdale to get some and some painkillers (hospital didn't provide any paracetamol or ibuprofen) and then to Ireby for soup.  By the time we got back I was completely exhausted.  I had to go and lie down almost immediately and didn't really recover for the rest of the day.

Just as I fell asleep the phone went - it was Dr Morgan from the surgery, she was hoping I was out of hospital and wanted to check on how it went and how I was.  She was lovely, very concerned, understanding, sensible etc.  She knows of two people who have had pseudomyxoma peritonei - one was a patient at an old practise, she lost touch so didn't know how it went with them and another is a family member, however, her diagnosis got down graded to something else and she is doing really well and is clear at the moment.  She has put on her notes that I can ask to speak to her personally via triage, and has said I can call at any time.

Matt, Mum and Dad were cooking the goose today, I had totally lost interest in anything by the time dinner was ready and managed just a tiny, tiny portion.  All I wanted to do was lie down.  I think everyone realised, as I got sent up to bed before everyone else had finished.  What can I say?  I overdid it!!!!!

Tuesday
After yesterday I realised that I really do have to take it very very very very easy if I am to last the day.  After breakfast Kate turned up for a natter, which was nice.  I then lay down for an hour or so, before Matt took me to Clapham for lunch.  We had soup, did a quick, short circuit of the village and then returned home so I could rest before Tom came home.  Then I got up, managed to make dinner, and think I stayed up until about 8pm.  A better day than yesterday.

Wednesday
Mum and Dad left to go home today.  They said that as I wasn't an invalid and Matt was looking after me well, it was time for them to go and for us to re-establish a routine that works.  We were all sorry to see them go, they did a stirling job keeping everything going whilst I was away.  Matt said that he doesn't know if he could have coped without them, so it was big hugs all round.

Caroline came round for a natter after they had left and then Matt took me to the Community Centre so we could post Leia's Japanese pressie.  Now, everyone who knows Ingleton will know that the Community Centre isn't that far from us and we went the field way (i.e. no up and down, just flat).  I got there fine, and was expecting a nice long sit down whilst Matt waited in line (there is always a queue on Post Office days).  Typical, there was no wait today, so I was back walking home in 5 mins. I was a little shaky when we got back and I had to go straight back to bed to lie down.  It took me 3 hours to recover!  Wow!

Tom had swimming this evening, I was hoping to go, but my body was telling me no so I stayed behind.  It was a shame, because he did so well, that he went up a class.  Fantastic.  However, that now means his swimming time is 7.15 - 7.45pm which means he's going to be more tired mid week, and I probably won't make next week either!  Never mind we were both very proud of him.

Thursday
Thursday morning Anne and Janine came round in the morning which was lovely, nattering about nothing in particular.  We sent Matt out for the day on his motorbike - he needed a blast to help get his head clear again and also the weather was magnificent, if I couldn't join him outside in it - I couldn't possibly stop him enjoying it - you never know how long it will last!  Once the girls had gone, I walked over to the Newsagents to pay the papers.  A huge distance for me and I was struggling a little on the home straight, but I did it ok.

The afternoon was then spent in bed, and receiving parcels.  OMG - I received so many cards and parcels today - I was certainly feeling the love.  One in particular from Helen Singer, touched me - she sent me chocs and loads of lotions and potions for the body and a lovely card.  It all got too much and I broke down in tears.  Of course that is exactly when Matt decided to call me to let me know how he was getting on.  I think he got a shock, but after I explained they were happy tears he was fine!

Oh I got my appointment card through from the hospital today - I don't get to see Nick Wood again until 5th May.  I was surprised as he told me 2 weeks and this is 3 weeks!  I guess it's not a problem long term, but it seems like the wait to find out whether it is cancer or not is going on and on and on.  I can't plan anything until I know - Lily Pad Bakery is asleep at the moment and will have to stay so.  I know it's only another week, but it will be a long week, I just want the diagnosis over and done with.  What will be will be, but please tell me what it is!

Pat & Bob came round in the afternoon to say hi.  Tom got picked up from school by Caroline for Fred's party.  I was hoping to go with Matt to pick him up, but by 6pm I was flagging again and as I am now listening to my body, I decided it would be a mistake, so stayed at home.

Friday
Today was milestone day.  I was determined to do the school run in the afternoon.  Mandy came round in the morning with 4 huge chocolate cakes.  She said that both Anne and Janine had seen her and told her they were worried about me because I'm not eating.  Not sure huge chocolate cakes are the answer, but Matt and Tom will certainly enjoy them.  It was good to see her and we were able to swap our horror stories - we can certainly wrack them up between the two of us.  She's a little worried that I'm not crying enough.  She said that she cried the whole time, ended up in therapy etc etc, took 3 years to get over it.  She wasn't expecting that of me, but says I should be crying more than I am?  I guess I just don't do crying about me - I quite happily cry about other people, just not very good about doing it about me.  Plus I STILL don't have a diagnosis so don't really have anything to cry for?

Anyway, after she left I took to my bed to rest in time for the school run.  Typical, I was almost asleep when it came to 3pm, but I was determined.  I wrapped up warm and we left home just after 3pm for the walk down.  I think I managed to walk a bit faster today, so we got to the school quite early.  We had a sit down on the bench before heading up to the playground, where once again I sat down to recover.  People were pleased to see me, especially Tom who kept telling me how proud he was of me.  It's like our roles have been reversed - he's the adult and I'm a toddler who needs praise and encouragement and a nap at some point during the day!

Anyway it was a good end to the week - things are looking up, I am getting stronger and fitter.