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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

Progress

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.


October 01, 2006

3rd chemotherapy

Last friday I had my 3rd chemotherapy. It was touch and go as my white blood cell count was below 1 on wednesday. Luckily I saw my oncologist on thursday and he suggested am emergency test on thursday. If the white blood cell count was above 1 then they would go ahead. The nurses instructions are to wait until it is 1.5, which would mean a week’s delay. I think the oncologist could see that I was really well. I put this down to the chinese herbal remedies I am taking, acupuncture and also the active chi therapy I am doing.

The whole ting is that while I have not as much energy as usual and my brain is working less well, I am generally quite lively in weeks 2 and 3. I know week 1 will be hard week, but I am generally well. I have problem with holing things, increased clumsiness is frustrating. Mind you I can still do up buttons which is apparently a major problem with taxol.

The chemotherapy went well this time. I had no problems with my blood pressure which was a relief. It still took a long time. But I was out by about 5.00 p.m.. I felt pretty dopey as the Piriton kicked in more than last time. I spent a lot of the time fast asleep. We decided that it was pointless Michael sitting with me all day. I am not much company dozing off all the time. We spent a quiet evening and I was fine on saturday.

We went to hear Bryn Terfel in a gala concert at Warwick Arts Centre on saturday evening. I brilliant experience. He has a beautiful voice and an amazing presence. He was accompanied by the Machester Camerata and Caitlin Finch was playing the harp..She is also amazing, realy make the harp come alive. With Michael’s help, lots of nudging, I managed to stay awake!


September 21, 2006

Chemotherapy effects

Follow-up to chemo after–effects from Margi Levy's blog

What is really strange is that there seem to be good days and bad days with the chemotherapy. Tuesday was a brilliant day. I seemed to have a lot of energy and was baking and cleaning. Very domesticated! Went to the gym and went swimming. Felt really good after that. Does not sound much, but it took up most of the day. Felt great and was thinking futures. Sometimes it is difficult to know what to do for the best. I do sometimes wonder how I managed to work at all – my brain is somewhere in my boots half the time.

It can get quite lonely at home, although I have lots of good friends who come and see me. The curse of the professional woman is that friends are too, so during the day it is difficult to meet up.

Wednesday was a really own day. I felt dperessed all day. I am not sure why, although it might be to do with stress. The littlest things going not quite to plan seem to become overly important. It might be chemical, I don’t know what effect the drugs have. All I know is I was glad the day ended. Nothing seemed to go right and I had no energy. Probably overdid it on tuesday. Maybe I need to learn to pace myself better: always been a problem.

Today, I am fine again. I did sleep better which may have helped. Starting to be optimistic again and get a few things done.


September 18, 2006

chemo after–effects

I was being a bit optimistic when I wrote the last entry. After that it was all downhill. While I did not have the agony of the first time, my legs and arms ached as if I had a very bad dose of flu. By wednesday I could not do a thing. Everything was hard work, I did a lot of sleeping, which was probably a good thing to do. I could not eat much. I ended up with the good old comfort food of Heinz tomato soup, not something I would normally eat. I found it impossible to do the juicing I have to do every day. I know it is good for me to have the juice (raw carrots, beetroot, celery and watercress) but it was just too much to do. It was a measure of how bad I felt that I did not add anything to this blog which is the reason for the great gap.

The good thing is that by thursday afternoon I was starting to feel better, particularly after being able to meet a friend for coffee sitting in the sun. Still tired, came home and flopped on the sofa. Getting to play some really restful music which helps me relax. I enjoy listening to lieder and medieval music, makes me feel good. My energy was still down on friday. I had Qi therapy which works on helping the energy flow within the body. It is very relaxing, but I think my energy was so low I was not responding as well as usual. It took acupuncture on saturday to help the flow. I really feel a lot more energetic now. It is quite an amazing change.

Got to go to the cinema to see The Wind that Shakes the Barley. A film that everyone should see. It is not just about the narrow context of the Irish Civil War, but it demonstrates the wider issues of revolution, pragmatism and idealism. A brilliant experience. Even got to the gym on sunday, although that might have been taking things bit far. I have to be careful to conserve my energy and I may have overdone it.

But I am getting better all the time. I will be fine over the next couple of weeks, I am sure. Although the round of blood tests starts again.


September 11, 2006

Chemo Update

Friday was another long day, having my chemotherapy. We did not start until nearly 10.00am with all the pre-med stuff. Lots of anti nausea infusions and then Piriton to prevent adverse reactions to the Herceptin. My blood pressure went up rather high while this was going on. Not sure of the reasons, it did start to come down to a more acceptable level. The nurses wanted a doctor’s view, but he seemed to think everything was OK. However, it slowed the process down rather. Then it was 3 hours for the paclitaxel. I thought it would be a bit shorter, but I was wrong about it. Finally left the hospital about 6.15 in the evening. Quite tired after what was a long day. However, it all seemed to go well.

I have had no nausea. My legs are not hurting. The Gabapentin is doing the trick there. Just a bit tired, although that should wear off in the next couple of days. Starting to get the pins and needles feeling in my hands and feet. I can put up with that particularly as I have a good massage oil which contains lavender and St Johns Wort.

It is a bit of an effort to do things. I am reading a lot of light books, particularly detectives. I read Andrea Levy’s “Small Island” which is an excellent analysis of attitudes to Caribean migrants in the early 1950s. I found it really stimulating. You can see the ideas refected in all the migrant waves. We need to be more welcoming society.


September 07, 2006

Chemotherapy update

Got the good news this morning. My white blood cell count is back to normal so I can have my second dose of chemotherapy tomorrow. I was getting a bit worried as it was taking so long to get back to normal.

It is starting to be pin cushion time again. The number of blood tests is going up again. At least the last two times the nurses have managed to find a vein. Often they can’t and I end up with bruises in both my hand and my arm. They are going to monitor me more closely to see the response to this chemo. If I still have problems they will reduce the dose to try to get everything onto a three week cycle.

I still find it dificult to think there is a problem as I am feeling really well. Everyone says I look good, even my hair. I have the most amazing wig that is really stylish, it looks quite real, which is great.

I guess next week will be fairly quiet while I get over the worst effects. I hope the capsules I have been given will mean that my legs don’t hurt so much. I am not quite sure what to expect with the tingling in my hands and feet.

At least it is two down and four to go!


September 05, 2006

My Political View

I have been really disappointed with the Labour government. I was a Labour Party activist from about thirteen years old until Tony Blair invaded Iraq. I gritted my teeth over Kosovo, but Iraq was one step too far. Not only has Blair aligned the UK with the USA in a way that no longer makes us trusted in the the world, but this government has adopted Tory party policies such as PFI. I cannot believe that a Labour government is making future generations pay horrendous sums of money in interest to line the pockets of rich shareholders in private building companies. The current NHS and education services are paying through the nose for maintenance and repairs, reducing money available for front line treatment. I suspect that we will see more health trusts in deficit in the next few years. What I would like to see are government bonds to finance these projects. We all know that it is fear of raising the PSBR that prevents this, but the current approach is not sustainable particularly as there will be fewer tax payers in the future.
I was really angry when Blair stopped Mike Tomlinson’s ideas from being put into practice. I am really impressed with students who have taken the International Baccalaureate, they are rounded people in a way that A-Level cannot emulate. We need radical change if our education system is not to fail our children. But this does not mean faith schools. Religion has no part in education. The philosophy, principles, beliefs and ethics of religion should be studied but if we want an integrated society let personal beliefs be just that. This means a change to the 1944 education act to remove the act of worship all schools have to do currently. Integration will not happen through segregation which is what is currentlyproposed.
This Labour government needs to remember its roots and to realise that business only wants profits which may not be compatible with the need for social justice and opportunity for all.
I do appreciate that there are some things that the Labour government has done that make people’s lives better, such as the minimum wage. What we need is a period of reflection and review to remind ourselves of what Labour really stands for.


More Breast Cancer News

I have been waiting patiently for my next blood test which I had yesterday. I was hoping to have my next chemo tomorrow, but the hospital has just phoned to say its not possible as my neutrophil (white blood cells) count is too low. The problem with this is that it leaves you prone to infection from your own bugs. It is really frustrating as I am eating well. Juicing raw vergetables for the antioxidants; eating watercress and beetroot and carrots, not sure if there is a flag of this colour, but I would be a sure fire match for it. Physically I feel great, but it is not safe to move on to the next chemo dose until the levels are right.
My concern is that it will mean that the chemotherapy will be less effective as it is being done over a longer time. Alternatively, the dose may have to be reduced which again reduces the effectiveness. I have found that it is possible to give growth factor drugs to help, but I will have to talk to my oncologist about it. So it is off to the hospital again for yet another blood test tomorrow.
I do find it difficult to take each day as it comes, but it is something I will have to learn to do!


August 30, 2006

HER2 recurrence

I discovered a new lump in my pectoral muscle this April, about 4 years after having first had breast cancer. Three lots of surgery later and while there is no more tumour, the breeast cancer cells are lurking at a vascular level. So it’s chemotherapy plus Herceptin. I am one of the lucky 20% of breast cancer sufferers who can have Herceptin as I am HER2 positive. Not a good thing to be as it means an aggressive cancer, but at least Herceptin gives more hope of survival.

I have just had my first chemotherapy, Paclitaxel, with Herceptin and there are five more to go. I have just had the bad news that my white blood cell count is not high enough for the next one, sio I will have ot wait for a week. The good news is that I get to enjoy my husband’s birthday, the bad news is that I have to have yet another blood test. I always end up feeling like a pin cushion after the numerous efforts to get blood out of me.

This all means that the whole treatment is likely to take longer than hoped for. The normal gap between treatments is three weeks, but I am onto four already. I am still off work, Warwick Business School is having to manage without me as I don’t really feel able to come back to work at the moment. This is the first time in my life I have rested and I am enjoying the space to read and relax, when I am not recovering from the effects of the chemotherapy.

It has been a hard few months with all the surgery and uncertainty about treatment, but with the decision to give me chemotherapy, life is certainly less fraught.