Calling all triple negative breast cancer patients in the UK

Thank you for your post and for starting off the discussion about your experience with radiotherapy. I was surprised to know that in Ireland you are not using any creams or lotions. I suppose different health systems have different ways of treating patients.

I was amazed to learn that if there are any burns or blisters you will be treated by the burns unit! I had no idea that people could burn in that way from their treatment. It does not sound normal to me. I had no pain whatsoever. I remember my oncologist warning me that there was sometimes inflammation of the lungs. Luckily for me, I did not experience anything like that.

It must be nice to be able to talk to other people on the bus and it need not end with treatment. You can always form a group and keep in touch afterwards. I am amazed at all the social groups that are forming on various threads. People are meeting or preparing to meet in New York, others are going to Las Vegas and so on. I do not know why it is but this does not seem to happen with the Brits. Could it be that they are too reserved? I am a bit different, having spent six years in France, three in Morocco and seventeen in Canada. Why not start an Irish Moving On group? How are you getting on with the three elder gents? There were a few men having radiotherapy for prostate cancer when I was going through my treatment. The journey to get your treatment must be very tiring, especially every day for five days a week.

By the way, Bernie, do you get given a lot of information at the hospitals in Ireland?

Your cottage looks so pretty and the flowers are so colourful. I can imagine your life is peaceful there. You are far away from the madness of the city and here am I thinking that Exmouth is small! It is about 40,000, but I was born in London and spent the first twenty years of my life there!!!

Best wishes
Sylvia

Thank you so much for your post. It is very much appreciated, as I know you are going through a difficult time.

It is good to know that we both need quiet time.

I am glad to know that you are holding up OK but sorry to hear that you are dealing with severe back pain. Thank goodness for the morphine and steroids. I hope you will have good news from your MRI scan.

It is such good news that your clinical trial has finally started and that you will be starting treatment next week. Please let us all know how you are getting on, so that we can support you. I do hope it will work for you and that it will help your back pain. I was also glad to know that the drugs are helping with your cough as coughs are very wearing at the best of times.

How exactly does the morphine make you feel? I do hope it makes you feel good.

I was sorry to learn about your PET scan report, but keep looking on the bright side and hoping the trial drug will work. I do not know much about PET scans. I have never heard them mentioned at my hospital. I am wondering whether we use them in the UK. All I know is that cancer cell glycolysis is the basis of positron emission tomography. Does anyone know about this?

Thank you for your useful information about radiotherapy. I suppose radiation must make some people feel nauseous because we often hear about radiation sickness.

Best wishes
Sylvia

Thank you for your information about your experiences when you had radiotherapy.

You asked about radiotherapy after a mastectomy. I did not have any problems with the scar area. I had my mastectomy on May 17th 2005 and then started radiotherapy about the last week of June and had it for three weeks. They told me the time between was to give everything time to heal after surgery. I hope that helps you.

Best wishes
Sylvia

I was interested to know that your breast cancer was also in the right breast. I was also interested to know that you are going to be tested for the BRCA gene. I think this is a very good idea and I think we should all be tested. Here in the UK it is difficult to get genetic testing. You can get it on the NHS but it is not easy and private is very expensive.

I think that vitamin E oil is a marvellous product and I am glad to know you are using it.

I do quite a lot of gardening in the grounds where we live, so I was interested to know that you and your husband do a bit. I think it is very good therapy. I find it peaceful and calming. I have been doing quite a bit today as I needed some peace of mind after two trips to the hospital in Exeter and a trip to the dentist yesterday, which I found painful! I shall reply to your post about homoeopathy and my life tomorrow, as I am getting very tired after doing a lot of posts. It is 8 pm and I think I am going to watch television for a little while.

All the best
Sylvia

I was interested to know that you are interested in homoeopathic treatments, along with regular medical treatments. I read last week that it is now considered enlightened by the medical establishment to include alternative treatments along with orthodox. I have a mind of my own, accept that I have to play an active part in my own health and if I think a product might be of help I research it and try it. After all, a lot of the orthodox medicine comes from nature, so why should the medical establishment mock natural products? I think Taxotere (paclitaxel) comes from the yew tree and along with Taxol (docetaxel) they have done wonders for the treatment of cancer. As you may remember, I saw a homoeopathic consultant to whom my breast care surgeon referred me (and other patients) before I started my orthodox treatment. Unfortunately, it now seems impossible to get funding here, but I think the UK has to adopt more progressive thinking in many ways. We have our feet too much in the past in the UK.

I think it is good that more and more surgery centres are becoming popular in the US. We certainly need everything near to where we live when suffering from breast cancer, other cancers and other degenerative diseases. A friend of ours is having to travel from here to London for an ablation procedure to do with heart problems. Even if they lay on transport, that is one hell of a journey, especially if it is done in a day, as I expect it will be. That will be a 300 mile round trip!

I think it is so unfair that people have to suffer financially because of illness. Any fair country should be able to support the sick and needy. In the UK we have a very unequal society.

Thank you for telling us a little bit about your life in Punta Gorda. I can understand that you have found it difficult to get used to life in Florida after Philadelphia. I can understand how you miss the seasons.

I suppose that each one of us on this thread goes through the same motions in our daily lives wherever we are. It is a routine of work, eating, shopping, cleaning, paying bills and sleeping. In between we hope to get some relaxation.

How unfortunate that you were diagnosed with breast cancer just after returning from a trip to London that you so obviously enjoyed. I am sure you will return there when all this is behind you. I would not worry about wearing a wig. They are so natural looking that nobody notices. In fact, friends here thought that I had not lost my hair during treatment! Your hair will grow back pretty quickly anyway.

My life here in Exmouth is pretty quiet and uneventful. I do not look for too much, and, of course, my biggest wish and hope is that I shall live cancer-free. In my younger days I liked to travel and after finishing university I went to live in France, where I taught 11 - 18 year olds. I also lived in Morocco for three years and taught mainly boys 13 - 18. It was quite an experience and I lived through the time when there was a military coup, pretty frightening. I taught French in the UK for a bit and then my husband and I went to Canada where we stayed for seventeen years. We have been back in the UK for seventeen years and have lived in Exmouth for nearly ten years in an apartment complex, which I help run as a volunteer director. There is quite a lot of work involved but I can cope because I am very hard working, thorough and dedicated. My motto in life has always been that if a job is worth doing it is worth doing well.

I like to garden, walk, read a lot, and help people. Wherever we have been, we always seem to adopt elderly people and help them.

I like peace and quiet and I do sometimes get anxious. My life changed when I was diagnosed with breast cancer. It was such a shock as I had always looked after myself. Anxiety from that will always be with me.

I hope that gives you an idea of what I am like. I am tall and slim, fair skin, green eyes and brown hair. I have very little grey. I think that must be my diet.

Very best wishes
Sylvia.

I can understand how upset you get when waiting for scan results. You react how you react and we are all different. There is nothing wrong with that. I think it is good to cry and be crabby if you want. I tend to be very anxious inside of me and I find that I cannot breathe properly. I may get a bit teary, but I do not know if I can cry any more about my self.

Best wishes
Sylvia