living with ovarian cancer

Hi Sarah,
Have you decided whether you are going for the SAPPROC trial or topetecan as per your last blog?
It's not easy to cope with, especially for people like you and I who are not getting the remissions other people are getting. Do you have a macmillan nurse? They can help you come to terms with the journey we are on.
All you can do is eat as well as you can, exercise when you are able and believe you can fight - the rest is down to the oncologists.
Nobody knows which way our cancers will develop.
Good luck with your next treatment.
Love Lizzie
X

Hi Sarah
I guess that we are all different and come to terms with the knowledge that we have cancer in different ways. When my cancer returned after 13 years my husband and i thought that we could deal with it but found acceptence difficult. We were helped hugely by our GP, the speialist nurse at the hospital, a clinical psychologist and, now, a community pallitaive/macmillan nurse. We don't spend a great deal of time with any of them but they have helped us take one step at a time and reassred us that our feelings were normal. They helped us recognise our strengths and they give us permission to be upset from time to time. We have had a very happy 2 years despite physical developments and all these people have helped by talking to us regularly. So I agree with Lizzie - find someone to talk to. And accept that the feelings you have now are normal - as people say to me 'don't be too hard on youirself'. The oncologists have the daunting taks of trying to beat the cancer; we have the task of keeeping ourselves as fit - mentally and physically - as possible.

Good luck with future treatment - which ever you choose.

Love Angela

Lizzie's advice is excellent, but I would suggest that you also get one of the relaxation/meditation CDs made by Dr Bernie Seagal. I found them both relaxing and inspiring. You can listen as often as you want to - I was left with a sense of calm.
Also if you are well enough and there is a class near you, gentle yoga can help.
My thoughts are with you.

Hi Sarah

It's not easy, although I am in remission at the moment. The thought of what is going on inside my body often rears it's ugly head, I somehow feel unclean. I desperately try to push it out of my mind and try and find some positive thought to counteract it. Like today it's a beautiful cold sunny day and I've just seen the small children from the local nursery walking in crocodile fashion past my window, really cute, put a smile on my face. We really have no choice but to deal with this awful disease. This site helps. Lots of valuable advice from lots of wonderful ladies.

ChrisR x x

Hi Chris,
I had a nice moment yesterday. Unlike today, yesterday it was misty, cold and bleak. As I walked down the Lane near me, a really cute little smart car in pink and blue came over the horizon. I was so wrapped up, I must have looked like a teddy bear - anyway the bright little happy car made me grin from ear to ear and the car winked at me (put their winker on). I thought nothing more if it - except a few minutes later the car passed me coming back the other way and tooted me.
A little bit of human interaction goes a long way. Have you read the anti-cancer book? The bit about the baby rats being stroked by a brush emulating a mother's care and how it prolonged life. A feeling of belonging to the world. Well I recited this bit to my husband - so we now call these moments - baby rat being brushed. LOL.
Love Lizzie
X

Hi Sarah. I was diagnosed 2010 stage 3c ovarian epithelial cancer. Had taxol and carbopleatin, then op, then more taxol and carboplatin but 3- 4 months later my CA 125 was up and the cancer had metastasised to my lymph nodes. When I started on the saracatanib trial at the Royal Marsden my CA 125 was 1,400. IAfter finishing the first 6 weeks of treatment and after one week more into the second six weeka my CA 125 is now down to 650, and I am beginning to feel much better. It is not easy to be told, as I was at the start of my treatment in 2010, that my cancer was incurable and that I had only about 2 years to live. must indicate that I am improving.

When I felt particularly low I found that I learned to gain more pleasure from very simple things - watching the birds in my garden (I have a bird bath and a bird feeder) seeing the sun set, appreciating the company of those who care for me, listening to music. I was comforted by watching DVDs of someone called Prem Rawat with the ultimate aim of gaining something that he calls "knowledge". It is free, open to all, and if you decide you want it, you can receive from him certain techniques which I guess some would call meditation techniques that can bring you peace.

More and more I feel fortunate. I have several very close friends who have given me much support, two have accompanied me to hospital, one has been with me at weekends and one who lives in Ireland has managed to stay with me for weeks at a time, so although I live alone, I do not feel alone.

Cancer and its progress can be very unpredictable. Even the specialists admit that they can sometimes be surprised. I have met people who were given only 2 years and are still alive after 4 - No reason to suppose it might not even be longer. New trials and treatments are coming up all the time. Ask around, ask for a second opinion at a centre of excellence. It is worth it, even with the travelling that might be involved.

We all have bad times. My worst time was when my first course of treatment ended. I was blitzed and ended up on anti-depressants. I think part of the problem was steroid withdrawal but it took me about 3 months to start to feel normal. Apart from that I think I have felt more content since the cancer than I did before and this is partly because I have learned to value each moment that I have and appreciate the things I already enjoyed so much more.

Helpful advice that was given to me: "Don't be hard on yourself." "If you have a burst of energy, don't use it up all at once but try to pace yourself."
"Don't refuse any help that is offered, receive it with grace and don't be afraid to ask for more help when you need it."

A lot of us feel that the cancer is like a monster invading our body. It is different for us all. I have not felt like that. I see the cancer as a part of my body, although it is a part I would gladly do without! We can only speak of our own experience and what works for one person, does not necessarily work for another. I have found it helps to talk to someone else who has the same illness (I met her when I first went for treatment). She has ovarian cancer in her liver and we seem to be following a similar course. Perhaps there is a support group in your area, or you might meet someone in the hospital where you are being treated, as I did.

Very best wishes
Carrie

Hi Carrie,
Great to hear from you. I think about you often as I know you are on the SAPPROC trial. Do you know if you are having saracatanib or a placebo?
Your posting above is lovely, and I also love to watch the birds in my bird bath - but I have to confess it is frozen at the moment and I have not been out to unfreeze it.
Not sure if you know, but I have refractory disease which is not responding to std treatment. They are trying me on caeylx at the moment, but if it is not working by mid March I may see if I can catch the end of the SAPPROC trial or the start of the next phase.
Love Lizzie
X

Hi Sarah,
I know exactly how you feel and I keep asking myself the same question. I sometimes feel envious when I read that people have a normal CA125 and a clear CT. I know my cancer isn't active but I wish I could see the back of it sometimes.

I have found counselling very helpful we discuss some of the practical stuff of living with cancer like finances and returning to work. Today I was talking about how angry I sometimes get. I find it helpful to sometimes blog and have a bit of a rant on here. Recently I also wrote a poem about how I felt robbed by the cancer. I do find though that each day I feel a little stronger.