Next leg of the Lucy cancer tour

I have been home for just over a week now (since Monday 3rd August) and have just got home from my latest appointment at Whitechapel.

A sad little day as I hugged the doctors and Nurses from the team, I have been referred back to Southend hospital and the team have been fantastic to me and showed a lot of respect to my family.

One thing I won’t miss is my last tube coming out “the NG nose feed” this tube has been with me for six weeks, but was very important as it fed me whilst waiting for my bowl to “restart” after surgery, thank you NG nose feed tube but I won’t miss you!

So I need about six weeks to recover and put weight back on (dietian told me to eat ice cream etc, said I was too healthy!) I am buying some puddings and ice cream to supplement my fresh fruit; I have about 3 stone to put back on.

But my next stage is to start chemo and I felt it was time to think blog and reflect, as I am scared of this stage but spoke to some people in hospital and have been given a support number about losing my hair and the other side effects of chemo.
But I am ready to face the next stage and as usual appreciating every step and new day of life.
So five weeks in hospital, two operations (total of 14 hours) 3 visits to the high recovery unit and a loss of three stone and a lost “friend”; I am tired and need rest!

Whitechapel is a ok hospital, just the nurses are overworked and who does enjoy hospitals, I am glad I had my IPod player, books and laptop.

The day of the original operation.

I was not nervous on this morning; I had been expecting the op and had time to think about it and what it meant.

As I checked into the ward I saw other patients being shown through to the waiting area.
I first had a visit from the anesistist team, who advised an epidermal for post op pain relief, which I was happy to do, then my gown to change into and my white anti DVT socks.
I was told I was in theatre at 10:30 as I was the “major” op of the day.
I was glad I brought my book in as it was 9am.

I had a man come up to show me to the theatre as we walked there, this felt strange, I can understand how a prisoner feels being lead to “the chair” or the gas chamber”.
I remember as I saw the doors in front of me that lead to the theatre, don’t look through them!
I had the epidermal put in and this hurt a lot.
Then I was out.

My first awareness as I was waking up was PAIN lots of PAIN; I was on my way to the high dependency unit and for my pain control.
My epidermal was not working, so a second option was being used, it took over 2 hours for this to settle down, it was horrible, crying and awful pain, then blessed relief and sleep.
I was there for a night then time to move onto a ward, the beds are in high demand here, really the purpose is to get you comfortable, sort your pain control and move you on.
But I was still getting pain (the faulty epidermal) so I still needed a visit from the pain team (I know sounds like pinhead and co from hellraiser!) and then finally I had morphine on a button press.

Then my first visit from my lovely sister and arseole dad (dad was to be banned by me later) they fought over a chair until I reminded dad that Jeanette was:

Recovering still from a operation herself
She was a lady so give the seat up
He was showing himself up

He then relented and sulked, yes my dad can sulk for England.
I was on sips of water at this stage, now this was a hot month and I so wanted to gulp back the water, but sips it was and no food at this moment.

With the sips of water and other little things like be able to sit in bed comfortable you realise the simple little things you take for granted in everyday life and also being in hospital yourself dignity.

What mean by this is simple things like bathing and washing, to me hygiene is very very important, so important that I would not date a person with poor personal hygiene.
Due to the drains I had in and other tubes my wash was a bowl of water by my bed.
Also at this stage I was so glad of another fact, that I had laser for facial hair removal!

At this stage I had been of hormones and was also in a ladies ward, imagine if I had not had laser on my face and stubble sprouting over my face? So please any trans people reading this article and thinking of transition the first thing you do is sort out your facial hair removal.

I went off track!
But I had a limited washing routine but was able to keep some dignity and also make friends on the ward and not worry about “do I pass” ok I don’t worry about this anymore.

At this stage I was also starting to vomit a lot and the doctors also worried.
I was told that I needed a second operation as possibly the “join” back to my stomach may not be working, also the body produces a lot of fluid everyday and mine had no way of dealing with it without tubes and machine help.

The fact I was being sick while on a feed was not a good sign, so after a long cry and cuddle from the ward sister I signed the consent form for my second operation.
Also my sister phoned bless her, also at this stage she asked me have you heard from “person x” to which I said no it’s like she’s just disappeared.

I was nervous before this operation, the stakes where different now, what if this did not work? What would it mean for me, I knew it already meant my hospital stay was to be extended?
Well back in recovery after, back in pain and the pain team was not about.
A nurse made a discussion to give me some morphine to they were on duty and this felt wonderful.
Also they got my book for me.
I am so glad I like reading as while in places such as I was, it is a wonderful escape to find in a book.

Back to a different ward this time and the tracing of my suitcase, laptop etc etc!!

Now a tribute to my sister, it took her nearly 2 hours to get from her house to the hospital and would have cost about £12, yet every Friday and Sunday she done this while also working and keeping a home, thank you Jeanette I love you so much.

She asked again heard from “person x” I said no, she really wanted to call her; I said no, she is most properly in a self pitying mood. My sister made this journey, person x could not contact me, what a fake!

I did speak to “person x” online at one stage, but it felt like care by numbers and perhaps im in a different place and it’s not worth being angry or feeling rejected.
I am fighting for my life and trying to be as positive as possible amongst my many feelings of fear, anger and uncertainly, they are a fragile ego who suffers self pity. I did notice they become the focus for my anger, perhaps it was because I wanted to grab hold of them, shake them and say want to swap problems?

Anyway let’s move on, I done the mourning for this friendship and now the tombstone is in place I got to forget negative and fake people.
I did feel better after this op and was walking in no time, but still I could not eat and a different tube needed to be put in.
Back for a local knock out drug and yes back to recovery (for last time) as it had been a rocky road again.

I was able to come back to the same ward and my see my friends again to wild applause.

When you’re in a surgical ward and everyone else has had a surgery of some kind you really do bond and share lots and in this ward us girls did, it was a privilege to know women such as Doreen, Kathy, Lucy and Jill.
Then I got to sit on the balcony in the fresh air, total heaven and this become our daily gossip spot.

So minutes blurred into hours into days and I got into my own routine.
Tubes come out, except the NG feed and I finished three books (2 Dean Koontz and one Richard Layman for the record) watched lots of films and television.

Then I got the word let’s put you onto a soft food diet.
Now eating felt so strange and unpleasant after four and a bit weeks without it, but I managed not to be sick and found a fondness for strawberry jelly.

Has I was not being sick and the only thing keeping me in hospital was my feed it was put to me how I felt about going home with a NG feed and changing it myself, and I was like YES I can do this just let me go home!

Has I was packing my case to g home (this felt wonderful) I noticed I still could not find my DVD case, this had 20 films in, series 3 of Xena and friends and had been missing since my second operation, but I could not get stressed I thought I still got my laptop, IPod and PSP and I replace the films.
I have replaced friends and xena for a grand total of £20 from play.com is life worth getting this stressed? To me the answer is no.

Another happy memory of my hospital stay is the wonderful messages of support from Caroline and Demi (yes my twitter and blog friends) Caroline getting so many people to email, to a woman feeling deserted by a so called friend this was a priceless moment and I love and thank Caroline so much.

After being home for a week and now my nose feed out its onto the next stage, Southend hospital and chemo, so it be more headscarves shopping next week (my aim to go to town) and a look at more wigs.

I will fight on and believe me every day is a treasure, remember if you have troubles face them and don’t let them get you down.

Love and peace to everyone and thank you for taking the time to read my blog and comment back, I always value it.