Monday, August 11, 2014

The recovery

Cervical cancer, cancer, cancer recovery
Get Well Soon card from my 6yr old niece Violet
This is a really difficult post to write-I didn't even know what to call it and it's taken me many days to write it!

I feel like so much has happened the past 10 days but I think it's important to keep telling the story about the realities of cervical cancer.

However for those who are impatient and like a happy ending the good news is that my surgeon is comfortable the operation was a success and he has been able to remove all of the cancer.  He also removed (what he called) a 'massive amount' of lymph nodes to make sure there was no chance of any spread of the cancer but there is still a tiny 1mm sliver of 'residual' cancerous cells at the top of my v-a-g-i-n-a.  This word has become second nature to me now but I didn't realise how uncomfortable it can make people feel so apologies.

At the moment he is confident I don't need any chemo or radiotherapy which is the biggest relief.  I feel terrible for any cancer sufferer who has not only the trauma of surgery but then the mental and physical torture of further treatment such as chemo.  I felt so utterly beaten the first few days after surgery that the thought of going through any more treatment petrified me.

This however does have to be confirmed properly though via a PET scan with my oncologist and a full oncologists report regarding the residual 1mm left and anything else the PET scan may show as that scan will be of the whole of my body.  I have to wait 4 weeks for that scan but again it can be done here in Dubai at one of the big hospitals.

I have ummed and ahhed over how much to say about how I have felt over the past 10 days-the first few days were simply so awful and I don't remember that much, especially about the first two days.  There is some squeamish stuff in here just to warn you but I'll try and keep it as lighthearted as possible.  And this is a really really long post that takes ages to read but maybe I am doing it more for my benefit than anyone elses.

But back to my original 'message'-if I can prevent even one person going through what I have gone through to this point by them booking an overdue smear test then I will be happy. And so so many people have contacted me to say they have made appointments which is amazing.

The operation and recovery

I was fine when I was admitted to hospital on Wednesday 30th July.  I know this is going to sound very weird but sometimes I believe we get little signs that tell us it's going to be ok, and on the radio driving to the hospital The Fray 'How to save a life' and then Sonique 'Feels so good' were on back to back.  The title of The Fray song just gave my comfort and then in the Sonique song there is a line that goes 'your love, it keeps me alive'.  I took it as a sign-saving a life and staying alive-good stuff.

We had to be there at 7am and the nurses made me feel welcome and comfortable in a large private room with a view of the beach and the Burj Al Arab hotel.  Mike however was not comfortable and as soon as the nurses started administering the pre-meds (enema anyone?) and the cannula in my hand he was freaking out so I asked him to leave and he shot off like Usain Bolt.

Only with about 20 minutes to go did I start to feel a bit panicky and I quickly compiled, on my iphone a sort of 'last will and testament' that I then emailed to my best friend Danielle in a panic.  Just telling her about my life insurance policies and what I wanted done with the money and who I wanted my jewellery to go to and things like that.  To be honest, in terms of validity it wasn't worth the iphone it was written on but I wanted someone to know what my wishes were.  I couldn't send it to my parents-my mum would have freaked and the only other person I can trust with every ounce of my being is Danielle.

Anyhow, obviously I woke up and came through the operation fine.  However my poor parents and Mike had a really difficult and long wait.  We were told the operation would be 3 hours long but it was over 6 hours in the end, some complication over a 'large patch of endometriosis' I apparently had and again was never aware of.

At around 4pm I woke up with 3 cannula's on my left hand and pulsating braces on my legs to keep the blood flowing and prevent clots.  The only thing I can remember was begging for a drink of water as I was so thirsty and them refusing until about 10pm.  My right side under my boobs was absolutely rock hard, and my right shoulder agony and the nurses explained that with laproscopic surgery they pump huge amounts of air and water into you to separate your organs making it easier for the surgeon, and that your body holds on to a lot of the air internally which you pass naturally and this would subside.

I didn't sleep at all but I couldn't 'do' anything.  I couldn't watch youtube on my ipad or sit up and read.  There was a TV in the corner but I couldn't focus on anything so it was on silently all night and I just watched the pictures, drifting in and out of sleep.  And there was a sodding cockerel in the grounds of the villa next door.  Who the fuck has a cockerel on the beach road? He would wake up around 4am every morning, serenading me until about 8, along with the adjacent mosque. The nurses came in every two hours to inject me with something or other and this was basically my routine until I was discharged.   My IV drip was rotated between fluids, antibiotics and painkillers.  One bottle fed into me then immediately changed for my next cocktail infusion.

I don't remember again anything about day 2 apart from being totally in pain and getting out of bed for the first time.  They're really keen to make you walk around after a hysterectomy for several reasons-it reduces the risk of blood clots and it releases trapped gas being the main benefits.  I had a catheter (or as we delightfully named it, a Prada wee bag) so I had to stumble around with that in tow.  And I had a really sore left leg-and still do.  It felt like it was a trapped nerve or a pulled muscle, probably from the position my leg was in for so long in the operation we surmised.  The result was, I pretty much looked like a drunken tramp slowly staggering around my hospital room.  The nurses kept saying to me constantly 'don't look down' because every time I did I felt dizzy and disorientated, and someone had to guide me round the room and help me in and out of bed.

And I couldn't pass wind meaning my body was not only suffering the effects of a huge dose of anaesthetic but also was as hard as a bullet with trapped gas.  I swear to god, every 30 minutes a nurse would come in and ask me if I had 'passed gas yet'?  I was becoming desperate as it was so incredibly painful and asked if they could give me something to 'pass gas'.  They did.  It didn't work.  I was starting to worry I would always feel this way.  Then at 5am Friday morning, almost 2 days after the operation I passed gas.  The relief was almost immediate.

The best thing about day 2 was that about 10pm my mum arrived.  I have never been so relieved to see a person in my life.  My poor mum hates hospitals just like Mike and bless her, after about 30 minutes she went and vomited violently in the bathroom.  But then she was fine-I think it was a combination of the long flight and the pressure and stress of the whole situation that had built up over the past few weeks.  Plus I wasn't exactly looking my best and a picture of health when I saw her.  In fact, in her words 'you looked bloody awful'.

Day 3 we started 'bladder training'.  This is like puppy training where you teach your new puppy to be a good girl and pee when you want her to.  For me it involved placing a clamp on the catheter tube and letting my bladder fill until I thought I was ready to wee and them removing the clamp so my bladder could drain into my Prada wee bag.  The day was long, painful and frustrating.  I still couldn't sit up.  No position was comfortable.  I couldn't sleep.  I couldn't eat.  There were again some terrible films playing silently in the corner during the night-I don't recommend Punchline, 10,000 BC, American Dreamz (not Hugh Grants finest moment from the looks of things) or Cairo Hour.

I had over 20 types of medication and injections on Friday-painkillers of various sorts, antibiotics, anti blood clotting, fluids etc.  I couldn't sleep because no position at all was comfortable and it all slowly drives you insane.  Mum and Mike sat with my patiently, reading books and magazines and watching TV.  I feel like I just kept lying there numbly-not really feeling anything at all apart from the pain of the operation and smelling a horrible, sweet, cloying smell that no one else could.  It was pear drops crossed with nail polish and it was constant.  When my mum came in the hospital I thought it was her perfume but she didn't have any on.  I think it was anaesthetic playing tricks on me.

Day 4 was the most eventful.  First of all the catheter was removed and I was able to try weeing unaided.  Except it wasn't that easy and I paced gingerly up and down the room trying to get my bladder going.  I also had my dressings removed for the first time and I have four small neat incisions around my belly button.  The surgeon is brilliant and I am definitely not scarred for life.  I also got to shower for the first time since I was admitted to hospital 4 days earlier, which was hard work and I was aided by a nurse to do everything but felt amazing afterwards.  My left hand with the cannula in had become so swollen and painful that my veins just packed up and would not accept any medication through them so it had to be removed.  I was like a free woman-no catheter and not strapped up to a cannula.  But that meant all my medication was then injected straight into me.

The surgeon came again to see me about 2pm and said if I could prove I could empty my bladder I could go home.  An hour later I had my first wee.  There was still 128ml urine left in my bladder when he did the ultrasound and he said if I wasn't able to empty my bladder the catheter would have to go back in.  Another hour and I cajoled and coerced my bladder to co-operate and finally it did.  The doctor called me 'a little fighter' as he did the scan.

We left the hospital, very very gingerly at 4pm, Mike driving as if I was made of glass.

I have had a few problems since I came home-sleeping and pain being the main ones.  Now 11 days on I can see slow improvement every day although the end of the corridor is about as far as I can walk and it's slow, stiff and painful.  The huge amount of meds in my body played havoc with my tummy and the first night I was home I had an 'accident'-my mum who is an absolute angel and my hero just said 'come on lets clean you up' as if I had spilled a cup of coffee.  God, my mum.  I will never ever ever ever be able to thank her enough for what she has done for me the past 10 days.  Firstly, she had to give me injections.  I couldn't have done that for anyone.  I'm 34 and my mum has seen me naked every day, helping me to shower, dry myself and get dressed.  She brushes my hair.  She massaged my painful legs.  She is up in the middle of the night if I am.  She has done everything around the house (and Mike is brilliant too and does all our cleaning normally anyway) but she has cooked, cleaned, ironed and even driven my car!  Here in Dubai we drive on the right rather than the left as in the UK and I drive an automatic.  And anyone living in Dubai will tell you driving here isn't easy but she has taken me to the doctors twice.  She's administered all my medication every day, fed the cats, helped me up and down, cuddled me and been a shoulder to cry on when things have gotten a little too much.  I know she'll say it's her job as a mum but she is just incredible.  The days are pretty long and boring for her and she has been married to my dad so long they're two halves of the same whole so I am eternally grateful for her and know I am incredibly lucky.

I am still having problems with my left leg and with weeing.  I simply don't feel any urge to go for a wee and am having to remind myself to go every 3-4 hours.  It feels completely different to before and doesn't come naturally-I have to sit on the loo and start talking to my bladder (oh god I sound like a crazy person and I will have to knock that on the head when I go back to work!!) telling it that it is going to have a wee.  When it's really stubborn I have to rock back and forward a little bit (see crazy person) to get it going.  It's frustrating and requires patience that I am not known for having.  My doctor has warned me that the damage to my bladder might be permanent.

I guess now is just a waiting game.  Recovery slowly but surely.  I can see progress daily, I am just so bloody sore.  Emotionally I am up and down.  There is some really tough stuff to deal with-and trying to find someone who has gone through the same thing has been impossible.

A lady called Elaine (hi Elaine!) contacted me via my blog when I posted my first Life Lately to say she had had the same operation and our stories are very similar in terms of our stages of cancer and the treatment we have had and it has been a great support to receive her emails daily.  I even have to hold my hands up and say that until recently, if someone said they were having a hysterectomy I wouldn't have batted any eyelid or really understood it.  I feel too young to be going though this.  In all honestly I feel a bit bitter at the moment.

This time last week I couldn't sit up in the bed.  Now I can for short periods.  I also have an appointment with a female doctor to talk about some of the more emotional sides of this whole thing-the speed of the diagnosis/treatment and the impact of losing the ability to have my own family and just other questions I still have. And to see if I need any long term vitamin supplements etc, exercises etc

The one thing I didn't expect is the amount of support I have received.  I cannot thank you all enough, new and old friends for the incredible support, it has blown me away-and my mum too who has seen it with her own eyes.  I am truly grateful.

It doesn't seem enough just to say thank you but THANK YOU.

And thank you to all my guest posters who are doing an awesome job-I am definitely not able to blog myself at the moment. Thank you so far to Antonia , GemmaLatasha, LauraAnna and Lis so far and there are more to come!! And a massive extra thanks to Gemma for co-ordinating all the blog posts.

This might not seem like the most positive post and I am conscious of that-but of course if my surgeon is right and after the PET scan I don't need to go down the chemo/radiotherapy route, then from this whole situation this is the most positive outcome I could have hoped for.

I have documented my whole story on my blog to try and raise awareness of the importance of having regular smear tests.  I am ashamed to say that I didn't and I truly believe I could have prevented it getting to this stage.

My story-Life Lately, The Curveball and A little Update


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