My Ding-a-ling

It is now 12 days since I was fitted with my peritoneal drain to help manage my ascites (fluid collecting within my peritoneum)

 This is affectionately known as my ding-a-ling.


 I now wear it curled around on the foam pad, covered with some gauze and the whole assembly is then covered by a large flexible plastic dressing.  It is not invisible but so what, it is part of me.
The reddening above the foam pad is where the drain was 'tunnelled' under my skin to keep it secure and reduce infection.
When the District Nurse comes to drain my tummy, she first removes all the dressings mentioned above. She then opens the new drain kit.

This picture shows the yellow clinical waste bag (collected free by local council), the collecting bag showing the connection to my ding-a-ling, and the blue pack which has gloves, dressings etc.

Here is a picture of the contents of the blue pack.

I took these pictures of the booklet that explains exactly how to use the drain and put a fresh dressing on.

When I have had chemo, I become cytotoxic.  ( cytotoxic  linky for the very interested )  Basically this means that my blood, bodily waste AND of course, the fluid in my tummy can cause damage to living cells.  To reduce the risk to the nurses I will be doing my own draining for the time I am cytotoxic.  I have a box of drain packs and other supplies here at home and the perfect step by step instructions in the booklet  ( link to booklet for EXTREMELY interested.)

I am now going to be drained three times a week so that I can be kept more comfortable. It is hoped that the chemotherapy will stop the fluid building up soon and there will be reduced need for draining. Until then, I am very pleased to have my ding-a-ling.

... and for my next trick...

A huge amount has happened since I last blogged here, so here goes.

By Tuesday 9 April, my abdomen was extremely swollen and I was in severe pain and discomfort. I first went to my GP for some stronger pain relief. He prescribed Oromorph (a liquid form of morphine) and rang my oncologist for advice. He had to leave a message, so I said I'd ring Lee, my Nurse Specialist, and see what she could do. Lee got back to me very quickly and I was admitted, yet again, to the Assessment Unit. 
I was greeted like an old friend by Fanny, one of the nurses who had cared for me before, and she quickly settled me in.
A doctor was summoned and a decision made that a more permanent draining solution needed to be found. I was scheduled to have a permanent drain sited the next morning.
Tuesday night was one of the longest and most painful of my life. I could feel the pressure inside my body literally squeezing the life out of my internal organs. I was on Oromorph on demand, but the pain was such that I was prowling my room every hour or so. 
One of the good things that came from this was that my morphine demand was calculated and I was given a slow release alternative in the form of Zomorph. This steadily releases the morphine over 12 hours.

The doctor who fitted the drain, under local anaesthetic on Wednesday morning, was wonderful. He took time to explain, to let me catch my breath, to use extra local anaesthetic and made what was deeply unpleasant, bearable.

Between Wednesday morning and Thursday lunchtime 9l of fluid was drained from my tummy. The relief was substantial, quite quickly. What a joy to be able to take a big breath again!

The nurses and HCA's on Maple Ward are absolutely wonderful and took really good care of me.

I came home on Thursday afternoon so that I could celebrate Mr G's birthday with him.

The permanent drain means that I can be drained at home. The district nurses call in twice a week to drain my tummy, but I can drain myself if I need to.  This means that I should never be so uncomfortable again.

I have organised clinical waste collections from the house and an Occupational Therapy assessment is scheduled for early May to try to make showering a safer experience. 

My next chemo is on Thursday 25 April. I really hope it knocks the cancer back quickly and hard.

What next..

As I write, the chemotherapy drug is hopefully zapping the active cancer cells on my peritoneum.
What I feel is the battleground of side effects and the myriad of drugs I need to deal with them.

I had a fabulous memory making weekend with my family. My littlest granddaughter overcame her shyness to throw herself into my arms and hold my hand. She allowed Grandad to help her on the soft play equipment right to the top!  She and my grandson had a baby chat at my knee, neither using words but clearly exchanging meaning. 
I bought eggs for an Easter Egg Hunt complete with special bags to put eggs in. My own children enjoyed that too.
I made cookies with my oldest granddaughter, we used pre-prepared mix so it was easy (for both of us). They were delicious.
We went to the zoo, it was freezing cold, but such fun. Seeing my granddaughters face to face with marmosets was priceless. I swear the marmosets were looking at my girls as hard as they were looking at them.

So, everyone went home. Mr G and I tidied up the escaped finger puppets and I surveyed the rest of my life.

How might it be? What will actually kill me?
Truth is no-one can say. So there is no point in speculating, frightening me and those I love, when no-one can say.

When I went for chemo yesterday, I had to be very brave. It was very difficult allowing the nurse to insert the cannula into my hand. This time the chemo drug is not labelled life saving but life extending.

Today, I went for a walk. I got out my Teeny Tiny Textile Art materials. I noticed the toilet needs cleaning!
In short, my life is going on. It is my efforts alone that will dictate if it is a life worth living.
I'll make it a life worth living. I am worth it!

Not a bucket list...

This is a list of things I want to do when, and while, I am fit and able:

1.  Return to Jersey
2. Take Mr G to Cornwall
3. Have all my grandchildren remember me.
4. Make sure I leave a good mark on the world
5. Wiggle my toes in soft warm sand.
6. Have as many barbecues as possible.
7. Stroke a piglet.
8. Make many more teeny tiny textile pictures.
9. Read lots of books.
10. Get better at Mario Kart on the Wii.

Waiting...

I really have not had long to wait for my treatment.
Two weeks, is all.

The terrifying part is the speed with which my cancer is fastening its hold on me.

In just two weeks, I've had 10l of fluid drained from my abdomen. The cancer has already thickened my peritoneum to the extent that the latest draining was excruciating.
They had to restrain me to get the drain in.
I needed morphine to tolerate the drain.
I had so much gas and air for the removal of the drain, that I was as high as a kite, and yet I still screamed.

It is safe to say that I will not be allowing any invasive procedures on my body, other than chemo, for a good long while.  That being the case, I declined my doctor's request to have an endoscopy to find the cause of the blood I am regurgitating. I have doubled another drug which will deal with the symptoms.
My GP stated that he would be sensitive about hospital admissions. What a lovely man.

So, I sit here, looking 8 months pregnant, with an abdomen as tight as a drum. I'm taking strong painkillers and drugs to suppress cold sweats which drench me regardless of the temperature. I can eat tiny amounts at one time as there is no room in my stomach for more than a teacupful at a time. The fluid that is filling my abdomen is coming from the protein bit of my blood that builds my body so I am getting a little weaker. I seem to crave salty and savoury foods so I am indulging in them.
Looks like my Easter eggs are safe for a while yet.

Chemo starts on Thursday. Then I can start teaching those cancer cells what for.

I'm not writing this to get sympathy. I've had and got plenty...
I'm not writing to shock or revolt. This is how it is...
I'm writing this as part of my life...
This is my story.
One day, a long time from now, I truly hope - it will be my history.