Tuesday, 28 June 2011

The Fine Line

we tiptoe on faint lines
a tightrope of emotion
and a balance to fine to reach
a strong step forward
then two unstable back
never fully reaching
the potential of the end
anger and frustration
as forces knock and push
we reach out our arms
waiting to be held
wanting to be caught
there is no helping hand
from within
the strength will come


Saturday, 25 June 2011

The Decisions of Life

I was hoping that my follow-up hospital appointment would give me some closure on the last few months of Derek's rude invasion of my body.

Yesterday's appointment didn't give me that and instead it gave me a serious amount of thinking to do and some very difficult decisions to make.

The pathology results showed that Derek was a Borderline Ovarian Tumour (BOC). I was told by the consultant not to look on the Internet because the information is very limited and in most cases, explanations of BOC include the word cancer. He stressed it is important to know that I didn't and don't have cancer. This was and is a huge relief and I think a giant cloud has lifted from my family and friends. But it is still very hard to understand what Derek was - apparently it is so complex that even doctors don't fully understand. My lovely friend Peta found this for me though:

What is borderline ovarian cancer (BOC)?
BOC is probably best defined by what it is not. ‘Ordinary’ ovarian cancer is when cells grow uncontrollably on the surface of the ovary and are able to spread to other organs. Most cases of ordinary ovarian cancer are found at an advanced stage (stage 3 or 4). This is when the cancer has spread beyond the ovary. Although BOC arises from the same type of cells on the surface of the ovary, their growth is much more controlled, and they are usually not able to invade other tissues.
For this reason, some doctors prefer the term ‘borderline ovarian tumour’ rather than ‘borderline ovarian cancer’.
Because BOC behaves in a much less aggressive way, in most women the condition has not spread beyond the ovary when it is diagnosed (stage 1 disease). This means that for women who have had surgery to remove an early disease, the risk of it coming back is very small (less than 5%). Most experts recommend that no special follow-up is needed after surgery for stage 1 BOC.

It then goes onto explain that there are some difficult cases and of course, I am one of those:
- Stage-1 borderline ovarian tumours in young women treated with limited surgery to allow you to keep your ovary. There could be an increased risk of the disease coming back in the ovary you have kept.

I already know that there is a smaller version of Derek (now named Eric) on my remaining left ovary so the disease has spread. It was always the plan from when originally discussing with my consultant Mr Metcalf, that we would do the procedure in stages, giving me the chance to think about fertility options etc.

It was always more my worry that I wouldn't be able to have children and that it would be taken away from me, so to be faced with the reality that I now have those decisions to make, is all very overwhelming.

I have two options: I can either leave little Eric where he is, have him monitored regularly and try to conceive naturally and when I am ready to. I can have some eggs frozen also and to keep them as a back up plan if Eric suddenly grows at the same speed and I have to have my left ovary removed.
The other option is to have my eggs frozen asap and to have the surgery to remove my remaining ovary at the earliest possible chance. This will ensure that all the 'nasties' are out and I have no risk of the tumour spreading onto other areas in my pelvis (such as my bowel) which will involved greater surgery.

I cried all afternoon yesterday. All I wanted was for it all to be over; to come away from the hospital with a clean bill of health and to know what it is all behind me. I think until I have more surgery it is always going to be at the back of my mind that I have something 'alien' inside me. There are too many what ifs to leave it there - what if it suddenly grows, what if I fell pregnant and the hormones made it grow at speed - how would that affect the baby, what if it does spread.. what if... what if....

In three weeks time I have to go back with my decision, which at the moment is to have it all removed as soon as possible and to have some eggs frozen for when I am ready. I don't want to rush anything or feel under any pressure to have children before I am really ready to.
And if it doesn't work and I can't have children well that is something that I will have to deal with when it happens.

At the moment I am just very thankful for a such a loving and supportive family and circle of friends.

Tuesday, 21 June 2011

The melting of Little Miss Independent

When I went in for my operation, I knew that the recovery was going to be hard. I knew that I would be in pain and that I would be limited to what I can and can't do. But I don't think I fully appreciated how hard it would be.

Living on my own for the last four years has meant I have become very independent. I like my own space and I like being on my own. Some say I have isolated myself slightly over the years but I have been comfortable with my own company. I do things on my own, in my own time and I answer to no-one. I look after myself and I am someone that people turn to for a chat, cuddle or to vent so inevitably end up looking after other people too. In my family I have always been the one that sorts everyone else out, the one stuck in the middle of arguments and the go-between for people.

I have never been the one people fuss over or look after. So Derek's surgical removal has thrown me into a state of flux. I don't know how to cope or accept people wishing looking after me.

On my first day at home the girlies took it in shifts to be with me which was lovely and I did nothing but lie on the sofa, but even the company and having activity in my house felt unusual and something I was not used too. I sound like such a loner, but perhaps that is what I have become, part of me wanted to scream and just switch everything off to be on my own, but I couldn't so I had to welcome the fuss and just let my friends get on with what they wanted to do for me and it eventually it felt comfortable.

I have loved the closeness that has come back into my relationships with my friends. After 6 months of stress and depression following the business being set up, I pushed myself deeper into my safety cave and friendships had become strained and a little damaged. I was worried I had lost them but over the past two weeks I have never felt closer to my friends and I feel the bonds are as strong as they were a year or so ago. So I have one thing to thank Derek for!

This week, albeit only Tuesday, I have done too much already. I can see that the skin is healing on my stomach and I have a nice (and quite beautiful scar) but I forget the lower levels. I forget that my tummy has been cut and held open, muscles pulled and cut and parts of me taken away. These layers will take longer to heal and I am not helping them. I know that, but I find it so very hard to sit and do nothing. I feel panicked if I don't work, I feel stressed that if I slow down now, I will never get the drive back to push the company and its products forward.

I am not doing myself any favours. I know that. But how do I stop being a stubborn, independent woman?

Tonight I have been completely overwhelmed by the love and friendship of those around me. I never expect fuss and to be honest, I am not sure I like it or know how to deal with it. I feel uncomfortable when people spoil me - mainly because I have never had it. Don't get me wrong, my family is very loving and I rarely went without but being fussed over by others is hard to accept and I really do think that I am not worth all the effort.

So for friends and loved ones to rally around me, to be checking in on me, bringing me food, turning up on my doorstep out of the blue to help with work, sending friends to check on me, texting every day, calling, doing midnight painkiller drug runs and to generally be looking after me has been amazing and without sounding too cheesy, a little bit life changing.

And with one very special person filling me with love, affection and spoiling me with life's little delights, I hope that I can soon start to feel more at ease with being loved.

Thank you to Carl, Lucy, Ally, Laura, Anna, Peta, Jade, Lou, the #recoverymafia of Twitter and my wonderful family.

Sunday, 19 June 2011

Another Sunday

my heart sinks
as your lips touch
glass

another sip
a tongue poisoned
hurt

words slur
as eyes roll with
sadness

surrounding faces
bitten tongues holding
regret

tempers bubble
in the place of
love

these are the times
you will never get
back

Wednesday, 15 June 2011

A week on

It seems a little surreal that it was this time last week I was lying in a hospital bed waiting for my operation. It seems like yesterday but at the same time it seems longer ago.
This time last week I had sent my support team home (who had been complete rocks all morning keeping my spirits high) and I was snoozing on the bed in the Day Surgery ward waiting for 'my turn' with the knife. I was so tired I fell asleep as soon as my head hit the hard plastic covered pillow; I woke an hour later by producing a massive snore that not only woke me up but also meant that as I opened my eyes, the ladies on the other beds and nurses were staring at me.

At 2pm my turn had arrived. I was wheeled into a room where three people got to work on me straight away. One squeezing my arm to get my veins up, the other putting in a cannula and another attaching heart monitor pads. I remember facing two double swing doors which were the entrance to theatre; I felt like I was on a ghost train waiting for the ride to start. The nurse squeezing my arm asked me what I did for a job, I replied and that was it. I was under.

The next thing was me coming round, or trying to. I remember screaming with pain and shouting that it hurt. I knew then that I had not had the keyhole surgery but the open tummy surgery. The room was spinning as the nurses worried about my response levels. I was told my mum was upstairs refusing to go home until she saw me and that I had been in recovery for 5 hours because of respiratory problems. I pushed myself to come to in order to see my mum.
They took me up to the ward around 9pm, I saw mum and Flossy, told them I loved them (apparently my eyes were huge due to the morphine) and then fell asleep.

It wasn't the best night sleep. My obs were done every 15 minutes to start with so was constantly giving an arm and pushing my morphine button. My tummy felt sore and my muscles were agony. All day Thursday I felt as though I have done thousands of sit ups. Mr Metcalf came to see me and explained they had not been able to continue as keyhole because Derek was so big so they cut me open, removed the critter along with my right ovary and took a series of biopsies including one from my left ovary as there is something suspicious there too. A nurse then gave me a wash and made me get up out of bed which was almost impossible due to feeling sick and dizzy. That was enough for the day.

My visitors came and I cried when they left because they were all to the Isle of Wight festival and I should have been going with them. Instead I was stuck, in pain and feeling helpless.
Friday I came off all my drips but I was as white as a ghost. I scared myself. Two blood tests later and I was confirmed anaemic. Generally your blood level should be over 100, mine was 67. Mr Metcalf was a little baffled as apparently I hadn't had a 'massive' bleed during the surgery but I was losing blood from somewhere. That evening I had two units of blood transfused into me. I felt like a vampire.

Saturday morning I could have bounced out of bed. I had colour and I was excited that I felt so much better. The blood had done the trick. The girlies came to visit which was a highlight and I felt as though we could have been in a Sex and the City, or Friends episode - the giggles and conversation from the Day Room were awesome, although I was exhausted by the end of the day.

Sunday, the doctors were happy with my recovery and progress and let me home. Amazing to think after major surgery I was going home after only 72 hours in hospital. What they do is truly amazing.

Being a patient is going to take some getting used to. I am stubborn and I hate sitting still. I find it awkward being looked after and fussed over and even having company for a whole day freaks me out a little. My family and friends have been amazing and I love them all very much.

I am so looking forward to being healthy and back to myself for the summer - bring it on!