November 02, 2011

Secondary Breast Cancer

I have been struggling with the concept of secondary breast cancer since my diagnosis in November 2009. Shell-shocked is how I have been feeling. I was told the cancer had metastasised to lungs and bones. The doctors seemed to be suggesting I would not survive for long. However, once I moved consultants to Professor Grieve, a brilliant and supportive oncologist, hope seemed to be on the horizon.

2010 was spent trying to find a chemotherapy that would help. However, with each one I seemed to succumb to the most awful side-effects. I spent most of the year feeling very unwell as well as several episodes in hospital.

These was a Eureka moment in March 2011 when I was moved onto weekly Taxol and Herceptin. The world changed! No longer was I feeling unwell all the time, I started to put on weight and get some colour in my cheeks. I do suffer from side-effects, peripheral neuropathy in particular, but acupuncture helps keep it manageable. I am tired and can’t do as much as I would like. However, unlike three weekly Taxol, weekly Taxol means I keep my brain! I am still working although I find it tiring.

I am still here and life is looking good. I am enjoying being with my husband and seeing as much of the family as possible.

December 02, 2008

Catch Up

It seems like a good ideas to restart my blog and let people know what I am up to now. I have been doing some volunteer work with Breast Cancer Care which I throughly enjoy as I am able to help reading material and thinking about how publications can help others in a similar position. A couple of weeks ago I took part in a photo shoot with a couple of other women for a new booklet that will be coming out soon. It is great to meet other people and hear their stories. They were both very active in helping with the volunteer networks round the country. In general I don’t let the breast cancer get in the way of living. There are occasional concerns when I have to see the consultant, but on the whole I can forget about it.

Work is good fun. The Enterprise group at WBS is just that – enterprising with lots of ideas and new activities. I have been working on developing knowledge transfer projects, applied research applications with local companies. These are very exciting as you get to work with companies and also learn a lot about the way SMEs grow. I have also been developing a new masters degree programme with a colleague which has been hard work but wiill be exciting.

On the research front I am starting to look at innovative technologies and how SMEs make investment decisions. It will be interesting to see if the same criteria influence adoption as was the case for the Internet. I am also planning some work on the role of intermediaries in IS investment.

Life generally is good, meditation and relaxation play a big part in my life. WBS has been very supportive and we now have a regular class on Monday lunchtimes. Everyone who comes finds it really helpful – an hour of time-out which is relaxing and refreshing and sets me up for the rest of the day.

I plan to write this now once a week to keep in touch.

May 13, 2007

Getting Stronger

My energy levels are rising all the time  I now have a fullish head of hair, althugh it looks like baby curls - if you can imagine a baby with grey hair!  I still have days when the energy goes, but they are getting fewer. 

I am now back on the Herceptin.  Apparently I should not worry about a weakened heart, which is the reason the treatment was stopped for a few weeks.  This is good news and I hope the next test will also be positive so I can finish the treatment.  The downside of having Herceptin is that I get a headache for about 24 hours and flu-like symptoms.  But it should all be finished by September.

I have started back to work two half days a week.  I really find after a morning I am not much good for anything else for the afternoon. It's resting, relaxation and meditation for me.  I hope this will get easier as my energy returns.  I have mixed feelings about going back.  On the one hand it is good to do something that is not focusing on me, on the other hand I am concerned about returning to unchanged circumstances which were stressful.  Both the clinical health psychologist and my herbal medicine practitioner are concerned that I will find it difficult to have the strength to deal with things.

I am using the Active Chi Therapy, acupuncture, relaxation and meditation to help, but unlearning negative feelings and thoughts is hard, particularly when my body says it is feeling uncomfortable.  But the two half days a are do-able.  I get a lot of support from the other activities and Tai Chi, which all help me keep my equanimity.

On the social side I have recently seen Three Sisters in Russian (with surtitles- my Russian is somehwat limited) at the Arts Centre.  An amazing production from Cheek by Jowl.  I have not see the play for many years, but using Russian actors really helped capture the atmosphere.

I have also been away for a week-end in the Cotswold.  The Four Marys, Michael calls us (if you remeber Bunty) as we all taiught Maths in Central London 30 years ago, all get together once a year to shoot the breeze, play bridge and dine out.  Always good fun and it made me feel really good, although we had to slow down a bit as I got tired.

Life is generally good and can only get better!

March 12, 2007


I had not realised it has been six weeks or so since I wrote last.  So what have I been doing.  Lots more meditation and relaxation.  It is a complete re-learning of thought and behaviour.  Difficult as my body and head still stick with many of the old models of learned behaviour.  Being calm and relaxed when being active or dealing with conflict are difficult to manage.  At least I now recognise when I am getting disturbed.  Pausing and doing the exercises I have been shown by the clinical health psychologist soon help to bring me back to equanimity.  Also reminding myself that there are no problems at the current moment in time helps.  Every time I re-read the books I have been studying I learn a bit more.  Definitely a hermeneutic experience, behavioural change.

On the health front, my energy is coming back slowly.  I still have to take time-out for two to three hours every-day to rest. Occasionally my energy just runs away and I drape myself limply across the sofa for an afternoon.  What is encouraging is that this is occurring less frequently.  My hair has now met in the middle, so I have a light cap of grey fuzz.  It is almost getting to the stage when I leave my head bare and do not get too cold.  My eyebrows are really bushy, I am waiting for my daughter to help me with the tweezers - Ouch!

The only downside on the health front is that the heart weakening effect of Herceptin has happened to me.  Herceptin can affect the left ventricle, weakening the heart muscle and making pumping more difficult.  This means less oxygen gets to the brain.  I am taking Hawthorn to help with this and I have more astragalus in my herbal decoction to help.  I am seeing my oncologist later this week to determine whether or not I can continue with the Herceptin.  I know that these drugs help, but at what cost?

The fun side of life is talking to friends, meeting them for coffee.  The Arts Centre at Warwick provides a great venue for concerts and theatre.  We heard Carl Davis conduct members of the CBSO in music he had written to three early Charlie Chaplin films.  It was great fun and the music really helped capture the sense of the fun and excitement in the films.  We also saw The Seafarer, a really evocative play about relationships between brothers and friends set in Ireland.  The performances were really inspiring.  The play used humour well to explore some of the themes of loneliness and temptation.  It was a spin on the Dr Faustus legend, in this case the devil did not win. 

So in between, resting, reading, learning and practising meditation, relaxation and Tai Chi not to mention visit s to the hospital and doctors, time seems to disappear.  My kids ask me what I have done all day - it never sounds much, but I am always tired at the end of the day and sleep well.  I am definitely getting better which is a relief.

January 29, 2007

Hair it comes!

Sorry for the bad pun, but my hair is starting to grow at last.  It's no more than a light covering, growing from the back up, but at least my head is warmer when I go out.  My wig is great, but the wind whistles through it, so having some hair really makes a difference.  This picture shows my mother and I just before Christmas on a good day, I would like my hair to look like this in the future.  

I am still working on self-compassion.  Meditation and stillness is something that is really important to me.  Some days I can get a few seconds of stillness, but at other times it becomes difficult.  I am working on developing a self-compassion visual image.  Light and warmth are at the centre of my image.  It is fun trying to capture the essence.  Not easy, although I have found images that help me on the way.  My energy levels are up and down.  I have good days whenI don't collapse on the sofa in a stupor, not drinking, just a complete loss of energy.  I find it really strange how it happens.  Trying to balance my expenditure of energy so that I keep some in reserve is something I am learning.  

It is so much better now that I am having the Herceptin only.  It means fewer visits to the hospital.  Fewer blood tests and fewer waits to see the consultant to tell him I have few side effects.  I find going to the hospital really stressful, so it is good to only have to go for the Hercpetin.  Even better that there are no immediate side effects from it.

Energy is building up, which is great.  Althought talking to the clinical health psychologist it can take up to a year to feel normal after chemo.  Mind you , I am trying to change normal to be more calm and able to be more in the now. margaret and margi

January 16, 2007

Building Happiness

I am reading the Tao Te Ching which is a philosophy that I find very supportive and helpful in the changes I am working on. I find the notion of stillness and not forcing an idea that appeals. The thinking contradicts so much of our beliefs and behaviour in the western world. However, it really helps me to reflect on the changes I am trying to make. It is strange though, using words like trying, it suggests forcing, which is not what I am doing. I see it as more “repeated practice” which the Dalai Lama suggests is important for change.

All that I am doing is about not doing. This sounds like a contradiction in terms, but it really is not. I have used the Alexander Technique for years to help mitigate back problems. What I am finding now is that its principles of not doing really help with relaxation and the focus on building up energy.

Being at peace and having inner stillness are characteristics that are not easy to develop. I have fifty odd years of habit to undo. Self-compassion is growing, and I am working on “seeing the glass half full”. Mindfulness is also an interesting concept which is really helpful to pause and reflect on body, environment and mind. I would like to see children taught these concepts and ways of being, I am sure it would help them to survive and grow in school.

My energy levels are up and down. I know that I have about three hours before I wilt. Taking things slowly and steadily helps. I have to remind myself that I don’t have to do everything. I have started at a new health club and am slowly bringing myself back to fitness. The trick is not to expect too much too soon and to be pleased with what I have achieved, however small.

January 09, 2007

Welcoming the New Year

The chemotherapy is over. I had the last dose on December 8th. It knocked me out more than the others and I have been very tired. The good thing was that I got the worst of it all out of the way before Christmas. Christmas was relaxed and the whole family came up from London to see us which was great. We even decided to ask our local Indian restaurant to cater for us, so no effort which meant we could enjoy the comapny and not worry about cooking.

I am finding that my energy comes in bursts. I can have a good day, but it will take a couple of days of me sitting like a zombie to recover. Reading is difficult and sometimes even watching TV is a strain. I have just got back to my relaxation and meditation. Trying to do it with the whole family around is quite difficult. I have found the afternoon is a good time. This is once I have persuaded the kids to turn down the boom boom of their music.

Buliding on the self compassion and changing through doing nothing requires me to be kind to myself, which is often difficult as changing the habits of a lifetime are not easy. I do feel good when I get the moments of stillness. I realise that happiness depends upon feeling good.

The thought of going back to work is an idea too far at the moment and still upsets me. This is when I know that I am still learning to change. All the poeple who care say I need to focus on my health. Decisions on work are not important for now as I am not well enough to make serious decisions.

I am enjoying being at home, resting, meditating, relaxing, baking, starting projects that are fun such as a family recipe book and visualising self-compassion through images from the web. Small things but achievable and support the feeling of being relaxed.

I am still me and it is great to have friends that value me as I am. I am thankful for their support. My New Years Resolution is to be happy.

November 26, 2006

Achieving Happiness

Got chemo number five out of the way on time which was a relief. It means that the last one will be out of the way by mid December giving me a chance to have a good relaxing Christmas. The cumulative effects mean that I am taking a bit longer to recover each time and my hands and feet are tingling more, but I can still do things although I don’t have much strength.

More interesting is working on future prevention. I am currently working on understanding what brings me happiness as this will enable me to survive and grow. Fairly obvious, one would think, but reading the Dalai Lama’s words it becomes clear that there is a big gap between pleasure and happiness. Happiness is watching the sunlight dappling through the trees at Brandon Marsh. Pleasure is having a new item of clothing or seeing a good film. Kindness, compassion, gentleness are all qualities that I have to bring to myself to allow happiness. I mentioned previously that I have been working with the Clinical Health Psychologist at the hospital, with Acitve chi therapy and now reading the Dalai Lama. They all say the same thing. I was not expecting such convergence, but it is mind-blowing and stomach-churning. These ideas are vital to my survival.

Learning them is hard. A few steps forward and several back, but being kind to myself is essential. Learning meditation and relaxation gently is a major part of the change. It is not easy and I don’t always succeeed, but I slowly I will change and grow. I can even begin to understand and forgive last year’s attacks on me.

November 10, 2006

health Update

I had not realised it had been so long since I last wrote. It has been an up and down month. The last chemotherapy was delayed by a week as my white blood cell count was too low. It is difficult to deal with as I gear myself up for the treatment and then it does not happen.

I was looking forward to a week of feeling good and being able to catch up with people. Unfortunately I managed to catch a weird bug that had me laid out for a couple of days and feeling drained afterwards. So not as much fun as I thought.

This last chemo was number four – so only two more to go which is a relief. I will be able to start the New Year with improving health. I find that my energy is OK in the morning, but by lunch time I am feeeling washed out. A rest helps, but sometimes I feel unable to do too much.

The family are all mucking in. The children are discovering the joys of cooking and cleaning. I am trying to do the bits that annoy me. I have about enough energy for about an hour before I need to sit down.

I am working with the clinical health psychologist at Warwick Hospital to develop relaxation strategies. Her techniques mirror what I am already doing with meditation and relaxation. It really does help, although not an easy process for me to learn.

I really do appreciate all the good friends I have who spend time with me for coffee. It keeps me in touch with the real world. One of the problems with being off sick is that you can get a very constrained view from the sofa.

October 12, 2006

Taxol is taxing!

As previously, I spent a foul week feeling sorry for myself as I started to ache. My legs are particularly bad and I don’t manage to get much sleep. All right for me as I am not working, but my poor husband is also getting sleepless nights as he often keeps me company with a cup of tea in the middle of the night.

Not only is ther the physical pain, like a really bad dose of flu, but I feel quite depressed. I must say it is really helped by acupuncture and also the active chi therapy, like reiki. Both are about building up energy and believe me this chemotherapy uses it up. I have horrible mood swings that my family have to put up with, they are very good.

I still try to do too much when I am feeling OK, and I know I need to rest more. I had some notion of returning to work, but that has been knocked on the head as I am emotionally and physically not ready for it. I have agreed with occupational health that it is unrealistic as I am often tired and emotional, no, I have not been hitting the bottle!

Energy is like a yo-yo, and my brain is somewhere off with the fairies. Some days I find reading really difficult, even the simplest of detectives. It is also frustrating when I can’t do the Sudoku’s I can usually manage. I have to make sure I don’t start things I can’t finish. So very short term goals. I am doing a lot of baking because it is really satisfying and achievable, so our house smells wonderful and I am exploring new recipes. All healthy cakes with organic ingredients. Even the children are eating them.

Another week to go before the next chemotherapy, Number 4, so over half way which will be a relief, although I know the effects are likely to be more intense.

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Most recent comments

  • There are various types of chemotherapy treatments and each are relevant to different conditions. On… by dimis on this entry
  • I noticed your mention of the Alexander Technique. That method helped me with what I call "practical… by Jack C. on this entry
  • I only recently became aware of the situation thanks to meeting with David Storey. It would explain … by Martin Beckinsale on this entry
  • Hi Margi, I read through your postings on this subject and can imagine what you have and are going t… by on this entry
  • I can so relate to what you’re going through. I just had my third dose of taxol with one more to go.… by kim on this entry

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