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.

Tell it like it is...

Am I devastated?
Am I bereft?
Am I furious?
Am I angry?

You bet.

Have I curled up into a ball and rocked and wept, pulling the blanket over my head?

Hell, no!

Why?
What difference would it make?

In the scheme of things that is the new path for my life, what difference would that make to how it all ends.

I have incurable cancer. It is however treatable, and I have more than one option open to me. I have time left, I just don't know how much.
This makes me better off than many others.

Over the last three days, I have received so much wonderful support from so many people.
The hospital staff eased my symptoms (eventually) and I was treated with the utmost kindness and dignity.
Friends, in real life and virtually have swept me up and cradled me with love and affection.

Just promise me this, when it really gets ugly, whenever that may be, continue to hold me and Mr G in the same way.

Read  The Invitation  by Oriah Mountain Dreamer.

If you can do this, then the world will be a richer place, even when I am gone.

Beyond angry...

What am I beyond angry about?

CANCER

Having journeyed with ovarian cancer for most of 2011, I face another possibly more gruelling journey with my sinister companion again.

What were 'this feels odd' symptoms have manifested themselves as 'OMG' symptoms.

These are similar to, but much worse, symptoms to those I had just over two years ago.

My abdomen resembles a 37 week pregnancy. It is so swollen that it is pressing up into my diaphragm restricting my breathing and eating. It is pressing down on my bladder and bowel causing a huge haemorrhoid. I hurt, I cannot breathe, I cannot eat.

These symptoms have developed in about ten days.

Tomorrow I go to the hospital. I shall have blood tests, an ultrasound scan and the many litres of fluid will be slowly drained from my abdomen. This will help get me fit so I can travel to Barcelona for my special little holiday.

Yes, I shall still go to Barcelona, it is very important to do these things, especially when you have to live with cancer.

I shall blog my new journey.

Mr G, T, J, R, M, R, E, E and the one to come, you are the reason I choose the journey to try to save my life. I love you all forever.

Fixing Ali... a work in many parts.

Post moved to This and That - better place for it.
I've been off work for quite a few weeks now.  I've been seeing my GP and my therapist regularly. I've also seen Occupational Health. This all means that I've actually been working hard at getting well.
Recovery from mental ill health is most definitely NOT just a case of taking the pills and hoping for the best. Without a doubt the tablets have significantly reduced my anxiety and panic attacks. I can, once again manage things like getting a hair cut, or going to an unfamiliar place. If this surprises you, then I'm glad I've shared this. For me, being ill meant that I could not function at all. I had to leave family times early, take breaks from conversations with friends. The world became a frightening place.

When I first saw my GP, I was told to go away and do three things in addition to taking my medicine.

• I was not to think about work at all. I found this extremely difficult indeed. It was so difficult that I had to be signed off for a long chunk of time (months not weeks) in order to succeed.
• I was to take regular exercise. I was to leave the house every day at the very least. This took a lot of courage to start with, but I can now manage a 2.5 mile walk easily. My next goal is to change the route of my walk.

• I was to do something creative that I enjoyed. As I had already started making my Teeny Tiny Textile Art, I decided to continue with this and develop my skills. In this, I have been really successful and have opened an online shop here. To my total amazement and joy I have already sold six pieces in three weeks. 

How do I feel now?  I feel much better. I have some more work to do to rebuild my resilience. Through working with my therapist, I have realised that this mental ill health stemmed from years of blasting through five house moves, a career change, a divorce, a remarriage, life threatening cancer and bereavements on top of a stressful job and all that entails, without dealing properly with any of them.  I have also learnt that I can worry for England when I don't need to.  This new wrought Ali is still me, but I won't be taking responsibility that I don't need to take. I have been reassured that I am unlikely to become so ill again.

I have been building good relationships. I have taken opportunities to spend time with those I love. I have removed my self from harmful triggers and relationships. Shift has happened in the way I perceive things and in how I react to my triggers.  Mr G has been so completely and utterly wonderful that I truly know he is the other half of me, I could not have got so far without him.

Ali, then, is well on the road to recovery, and I say hurrah to that. Ali will, however, never be quite the same again, but I'm not sorry about that as she was very unhappy and now the sun shines once again.

Ill health...

Felled again. No, not cancer. It is what I believe is called psychiatric injury. I have been struggling for some time with panic attacks and anxiety. On Wednesday, I reached a crisis point. I could not go on being brave, coping, pretending all was well* (*delete as appropriate) How I came to this is irrelevant at present. I need to concentrate on getting well. Someone I greatly respect said 'Take your own advice' I am going to do so. So making pictures, reading, sewing for grandchildren and some cooking are all going to occupy me.

A year on.

I saw this today, and it led me to reflect on life a year on from completing treatment. The neuropathy mentioned in the article is what led me to stopping the paclitaxel part of my treatment. The neuropathical symptoms developed gradually from my first cycle of combined chemo. My fingertips first became numb, but feeling returned within about 8 days. I count myself fortunate that I told my Oncologist about this as it meant she reduced my next dose and enquired about it at my next appointment. When I reported, after cycle three, that I had tried to stand up but had fallen over as I could not feel the soles of my feet, she immediately stopped the paclitaxel.
The 4th of August marked a year since my last chemo. I reckon I'm as much over it all physically as I will ever be. I do still have enduring effects from my surgery and chemo.  I have proved I can improve my fitness and stamina this summer. I had a lovely unconsciously active holiday and have reaped the rewards in terms of strength and stamina. So what has remained affected?
The neuropathy still affects nerve endings in my bowel, my fingers and the soles of my feet.  The effect on my bowel is to affect sensation, it is very easy to become constipated unless I eat industrial quantities of fibre. Easily overcome but occasionally people look in askance at the number of dried apricots and prunes I can consume seemingly without side effects!

  Fortunately the effects on my fingers does not prevent me sewing or making my pictures. However I often discover I have repeatedly stabbed myself without always knowing I have done so.  My feet are often painful, the tingling of almost perpetual pins and needles often makes walking uncomfortable and sensible shoes a necessity. I have also been left with such bad 'restless legs syndrome' that both arms and legs are 'restless'.
I take gabapentin for the restless legs, and have been taking amitriptyline for fibromyalgia for several years. I believe that these both mitigate the effects of my neuropathy so that I am happily more free from pain than I might be.
I am and always will be extremely grateful for surviving. I am and, for the forseeable future will, live life to the full. I will also however always be living with the after effects of my treatment.
It does not end with that last chemo.

Genetic Testing.

A few months ago I had my first meeting with a Genetics specialist from Oxford at Northampton General Hospital., regarding a possible genetic link between my sister's breast cancer and my ovarian cancer. We were, she said, both 'young' to have suffered our respective cancers, I loved her immediately!  We chatted about family histories and such. There were , she said, some possible links (surprisingly to me though, no breast or ovarian cancers)  BRCA genes are tumour suppressing genes and help DNA repair, therefore when they mutate and stop doing this there is an much increased risk of cancer.

from ebeauty

I was given the rather bleak information regarding my outlook should I test positive for BRCA 1 or 2. Having already lost my ovaries did help, as my risks for breast cancer were halved, but remember I've already had ovarian cancer!  She said some women choose to have prophylactic mastectomies. I had already pondered this, and my decision was a definite NO to it. I would deal with breast cancer if it occurred. Anyway, as I had already decided I wanted to be tested, I went off and queued up at the Blood Taking clinic and dropped the sample off in outpatients for the specialist to take back to Oxford.
Today, my sister and I travelled to Northampton to get the results.
Our relief, when we were told that I did not have either BRCA gene, was enormous. I certainly felt that a weight had been lifted from me. I need no longer worry about how it might affect my daughter or my granddaughters.
Going to have genetic testing is not easy, there are many things to be considered, not least what one does with the information. I needed to know, I needed to find out.
Now I do know. The world is a wonderful place.