I haven’t forgotten to update…

I don’t know if it’s the relief of finally feeling and looking like a normal girl that has made   me feel like I haven’t wanted to write about my recovery. I feel like I’ve been so upset for so long that I have needed some time to just gain some self acceptance.

I’ll be completing some writing next week! I’m looking forward to it!

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My Surgery and the first evening…

After being wheeled into the operating theatre I was asked to come into the very small side room for them to anaesthetize me. I was introduced to everyone and people put me at ease. I did cry, I am not going to deny this but I am human and this surgery means everything to me- it’s such a big deal. Slowly but surely, I had been getting my life back over the past few months and I was desperate for this to develop further. The anaesthetist was just lovely and had a very kind, slightly dad like persona. He asked me why I had been totally fine in the room only 20 minutes ago but now I was upset. The simple answer that I could give was that I was scared of my recovery but not the actual surgery. I don’t have very large veins and getting a canula in is often an issue. They managed to do this quickly and I had a mask on my face, so before I knew it I was gone.

I woke up in the recovery room shaking very badly, feeling confused and teeth chattering. I was aware of someone sitting beside me. I was also aware that I was shouting but I have no idea what about. Everthing is pretty much a haze and I dont really have any recollection of what went on. I didnt feel well at all though.

I was later aware of being back in my room and shouting for Steven, at first I didn’t realise it was me shouting I thought it was someone else and remember catching myself thinking “Wow, I wish that person would shut up!”. I am sure that everyone on the ward thought that I was a complete lunatic. This time I felt groggy for alot of the day. When I had my last surgery I came around fairly quickly and was sat up chatting, this time I just needed to sleep.

The night was fairly long and my legs did leak excess fluids from the surgery which was completely as expected. I think that this looks a lot worse than it actually is but leaking through your compression tights onto the pads doesnt make you feel particulary nice. I had the pads changed a few times by Steven and a few by the nurses to keep me comfortable and clean. I stayed in that weird space between being awake and asleep pretty much all night. It was hard to try and get comfortable because both the back and the front had been worked on. The back of my calves had been improved, my knees again and the front of thighs as well as my back of thighs. Mr Karri also worked inbetween my legs in my groin area to debulk too.

I was taking oromorph to help with the pain and there were some points in the night were I really did feel desperate. Never at any point though did I wish I hadn’t done it!

In the room next door was a lady I met through my blog and she had had her surgery after me… small world isnt it?! We had text each oher through the night to keep each others spirits up which really did help- even though we were both not really quite with it! As ususal, Steven was there by my side on a reclining chair to take care of me and show me love. He did manage to have a little sleep or two and I am always amazed by what doesn’t wake him! On a number of occassions the nurses came in to give me pain relief and to give me antibiotics through the canula throughout the night which was exactly the same as last time. I think that the beginning of my recovery was probably better this time because I wasn’t as anxious about what to expect.

IMG_7611Here is my ‘leaking’ from the wounds in my legs. These dressings have been changed VERY often but the leaking is very common after this surgery. I did actually leak more after my last surgery.

Pre- Lipoedema Surgery 2 16th June 2017

On the morning of Friday 16th June I woke up at 5am for my second surgery. The car journey to the hospital was very quiet because I fought back nerves and tears all the way.  It didn’t matter how much it might hurt or how nervous I was because I was going to do it anyway. My outcome from surgery one was so many times better than I expected that 99% of me was desperate to keep on going as soon as possible to round two. When you have total trust in the medical professional you have chosen I think that going into surgery is easier. I didn’t even consider for one second that I would have any issues whatsoever in surgery and had complete confidence that I would have a positive experience. All of my fear was about how I was going to cope with the pain afterwards.

I arrived at Goole Hospital just after 7am. It’s a lovely little place with hardly any patients in it. One almost feels that it’s a little like going back in time. Super quickly, I was in my huge and sunny room waiting to be ‘checked in’. The most friendly nurse I could wish for came and sorted out all of my paperwork and we had the opportunity for me to discuss the things that I was worried about. I was concerned about my catheter and how quickly that was going to be removed. Last time, after removal of the catheter I had wet myself due to lack of mobility and then had sat in it for 24 hours in my compression tights. As you can imagine urine and nylon don’t mix and so I had nappy rash that became infected and sore. This is just one of those things, something you have to deal with but I certainly didn’t want it to happen again. The nurse, who was so kind, promised me that it wouldn’t happen again so I put it out of my mind.

I got into my hospital gown and waited for Mr Karri to come and see me for my photo shoot. These photos that are taken for guidance are a part I really hate. Standing there with the bits you hate about yourself having photos taken isn’t my idea of fun! I am always so grateful to Mr Karri because he always ensures that you maintain your dignity. I have this feeling that he doesn’t need to try to do this, it just comes naturally to him because of the way he is. My partner knows I feel (now felt!) uncomfortable with my legs exposed but he too commented each time on how the investigative part of the matter was performed with real care.

Mr Karri spent a lot of time drawing on my legs, looking at them from all of the angles and asking me about what I wanted as an outcome. I am not in denial about how my body is. I am a woman. I am a woman with a bottom and curves. I want to continue to be like this but proportion is key and I am aware of this. My bottom with very, very skinny legs isn’t going to work. It is clear that Mr Karri looked at me as a complete individual and advised me based on what would work for me rather than a non- realistic ideal. My outcome would be my outcome and it was going to be individual and the one that was going to be right for me.

I was ready for round two and so the pacing up and down started as I waited for the theatre staff to come and collect me. Suddenly arrived a trio or theatre nurses to come and collect me and they instantly put me at ease. What a nice bunch of ladies. Being close to tears I got into bed and they said to Steven to come and say goodbye to me. This was emotional. I hate to be separated from him really if I am honest. We are absolutely the best of friends before anything else. He asked them ‘please look after her because she is so special’ and this obviously choked me because  I was on the edge anyway. We had a huge hug and they took me away down the corridor.

The night before surgery…

This week has been a strange one for sure. I have worked every night until late into the night working on a range of different projects that my school needed me to complete before my surgery. Because of this I am nowhere near ready for my surgery. I had nothing organised, none of the things I wanted to buy for hospital and I don’t really feel mentally prepared either.

I am pleased that I am going to do this but I am nervous… this time I am more scared that I have been before. Tonight it is time for me to try and sleep and I will be back to my blog after tomorrow!

Fingers crossed everything will be okay.

Four days to go…

Usually I would have expected that I would have been blogging far more before this surgery but it has fallen at the point in the year when I am writing reports as well as making sure that everything for the end of the school year is tied off. I seem to be so swamped I’m almost not even thinking about the up and coming surgery.

Last night was broken sleep for me as I woke Steven shouting about my surgery and was fairly distressed. It seems that sub consciously the worry is there but I am literally too busy for it to come to the forefront.

My Mum and Dad have ordered all of my dressings and I have everything that I will need for keeping the sofa and bed safe from leaks as well as all the sterile equipment that I will need for changing my dressings.

I have decided that I am going to be making the maximum effort to stay as mobile as I possibly can. Last time I was in such a state that I literally just lie still for ages.

I’m ready for it now…. even though I have a ton of work to do for work first!

Less than 18 days until surgery number two…

It dawned on me today,  I am going VERY shortly for my next and possibly final surgery. It is in less than three weeks. Last Monday, I had my consultation with Mr Karri and it would be fair to say that he is pleased with the progress that I have made over the past few months. So much so, that he thinks it is possible that I will have the outcome that I hope after the next surgery! That’s great news for me and also means that I can spend the extra money on a new kitchen with all the extras to it I want!

He is going to take another 6l approx from the back of my calves, work more on my knees (above) and I am going to need a significant amount removed from my front thighsIMG_2002From the picture it is now really evident that I have a decent gap between my thighs and that this makes things so much comfortable for me to walk!

I don’t really mind where he is going to remove ‘it’ from because I know that he will make all the right choices in order to get me the best possible outcomes. I am keen however, for him to take away as much as he can.

If this is my last surgery I am going to need to leave my arms for now. I was hoping to prevent the development of larger arms by having removal from them now before they got too bad. This will probably be factored into a more longer term goal now.

My poor Dad (who was kind enough to fund my first two surgeries) has paid the surgery in full now and the date is really looming now! Steven has taken this week off work because it is half term and he is going to take me for a pre-surgery mini break to The Grand Amrath Hotel in Amsterdam for a few nights. He knows that I am really nervous this time and we both agreed a few nights in five star luxury (in a suite no less!) was really going to do me the world of good. This summer is going to be non existent for me this year because I won’t be well enough to take a holiday! Sadly, I have a lot of work bits and pieces to tie off before I leave for summer so I can only manage a few days break this half term- what a shame!!

I was thinking about the things that I am going to need to take with me to hospital because last time I took way to much stuff that I didn’t need and ended up with a few bags. This time I will know exactly what to expect and therefore will only be taking one bag for sure:

  1. flipflops
  2. compression garments
  3. face cream and lip balm
  4. wet wipes
  5. phone charger
  6. something to read
  7. side-tie knickers
  8. clean t-shirt
  9. dry shampoo
  10. my lovely Lacoste blanket
  11. large cashmere wrap to go home in

I don’t think that I could have wanted for anything else. My Mum, who is currently cruising in Russia, has already ordered my dressings. Can you believe that you don’t have any given to you at the hospital? I had some really nice ones which were actually really expensive (£2.90 each) and you need 12 per dressing change. The cheap ones just ripped off when you pulled the compression up which was both painful and annoying.

My swabs for my nose and perineum have been done and sent off and tomorrow I need to call my lovely GP to organise my blood tests to be done.

Compression isn’t the sexiest thing in the world….

DAsu1ctWAAAZCoEI have received a delightful parcel from the lovely chemist this week. Compression was a desperate issue for me after my last surgery. In fact, it was worse than the actual surgery itself. I have nightmares almost about pulling my compression on and off after having my dressings changed.

I am going to continue with the advice from my surgeon about wearing the ‘tights’ post surgery but my GP and lymphedema nurse from my local hospice have ordered me some Farrow wraps too. The wraps come in 6 pieces and are really easy to get on if your legs are really, really painful.

I did wear them for the day yesterday for a trial run and they feel great however, at 24c, wraps don’t really keep you cool. I thought that by the time I got home my leg would have wasted away!

I think that it is probably best to be prepared and have a selection of compression for me to use in order to aid my recovery.

 

Less than a month…

It has been a fair while since I have been writing about my recovery but with now only less than a month away the time is right for me to focus on my  second operation.

My legs have improved beyond expectation and I am feeling so good about myself. The picture underneath shows in detail the amount of work that Mr Karri has done! My thighs used to touch each other even when my legs were fairly wide apart  and not only this the shape was pretty much the same from the top to the bottom.

 

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I know that there is a long way to go and I also know that they are still far from idea but there is definitely light at the end of the tunnel!

The surgery this time for me is much more scary. I didn’t feel that I recovered particularly well and it took me a very long time to even be able to walk beyond shuffling to the toilet and back. This time I definitely feel a lot more scared. I aren’t scared at all about the actual surgery but the recovering.

I also know that after this surgery it is going to be a goodbye to the old me for good! Over the past few months my personality has changed significantly. I am so much more confident and I am also feeling generally much more adequate. These feelings of inadequacy have always been there and they definitely stem from my legs. Those old feelings have been disappearing gradually since February as my recovery has progressed. After this surgery I will never need to feel ashamed of myself because the root cause is going to be gone! This is such an amazing thing to be thinking because lipoedema really doesnt just effect your body, it  can cause serious emotional problems too.

Through the blog I have been put in touch with another lovely lady who is going to be having her first surgery on the day of my second. In fact, she is going to be in the room next door to me – small world isn’t it! It has been really good to have someone else to discuss everything with and literally share the pain.

Yesterday, the letter came from Goole Hospital and the time for my surgery has now been set. I need to attend the hospital for quarter past seven in the morning. At least I won’t have to be hungry and thirsty all day this time.

I have an appointment tomorrow evening with Mr Karri for him to give me a check up and to approve my surgery. I don’t have any swelling at all and although there are a few niggles still I think I am definitely ready for round two. ( I hope he agrees!)

Back to the Gym Again

On Monday this week I decided that I was going to start going back to the gym again. It was a real challenge to find the motivation but digging deep has been something I have grown fairly accustomed to over my life and because of this i’ve hit the ground running!

So far this week I have been to the gym for three consecutive days. On all of these days I have done a minimum of 45mins walking at a brisk pace on an incline. It’s been hard work and using my fitbit I have constantly monitored my heart rate and ensured that I am in fat burn and cardio zones at all times. It’s only been three days but I feel motivated and so proud of my walking abilities. I am walking taller and my posture and gait have improved significantly! It’s a bonus that my thighs no longer rub together and cause me discomfort.

As an additional bonus I am wearing jeans! They have no stretch in them either! I am feeling particularly proud of this because as anyone with lipoedema knows finding trousers to fit is a near impossibility. In the past I have found that Jaeger and Armani are the best fitting jeans for me based on the fact I have large legs but only a small (ish) waist . I am enjoying a new lease of lift currently and loving being me!

IMG_7415 (1)

This week, Steven and I have been working on clearing up my diet based on which foods are suitable for reducing inflammation. When I was waiting for my check-up at The Karri Clinic I noticed that there was a copy of the book below. I have worked hard to organise meals and planned well in advance. I would not like to say that this is a diet but it is a guide to eating for people with lipoedema that should be used to adapt your lifestyle.

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The book is for sale on Amazon and I think it was approx £15 and I would consider it to be worth the money. I am planning on losing 14lb in weight before my next operation and I am hoping that utilising this book and my fav Jamie Oliver 15 mins meals book will help me! It’s been very useful planning my meals ahead and ordering the ingrediants online. I am hoping that commitment and organisation are the key!

Surgery 2 this June!

I have officially been given a date for my second surgery and this is going to be 16th June 2017! That makes me nine weeks countdown. I am so excited to be moving forward with this and I don’t know if I am nervous or not as yet. I am certainly more knowledgeable about what to expect… this could be bad and could be good. It’s beneficial to how to manage post surgery  but I really don’t fancy the pain again!

What I do know is that no matter how much it hurts, the feeling of not having those awful legs and that constant pain and bruising is worth it!