Heather Von St James on Mesothelioma

I linked up with the Mesothelioma Center last year, to host a guest blogger writing about the incidence of mesothelioma in the UK and Europe. This popular post has been viewed 826 times, indicating the interest in this subject.

I have no hesitation in hosting this short video about a young woman, a mesothelioma survivor.

Heather Von St James

For more information, please see Mesothelioma Center at Asbestos.com .

How does your garden grow?

On a positive note, I'm linking this post with a new post, celebrating spring in the garden. And I'm linking up with Mammasaurus garden linky too.

 

Two sides of the same garden.

A metaphor for life.

My Mom was a keen gardener. A life-long devotee to rough hands, dirty nails and an aching back, she was immensely proud of her garden.

My parents thought that traditional, formal gardens were the only way to go. I am so different, mainly because I don't have any help in the garden. It's just me and the Boxers, and occasionally Mr B with the chain saw!

So I laughingly describe my garden as my 25 year project. I'm 7 years in to the project and I can see so much progress. For one thing, I have removed over 4 tonnes of rubble which the previous owner buried in the garden.

As I dug out the brambles, up came the broken tiles, old bathroom suites and rusty bed springs - I kid you not!

But, bit by bit, I have exposed the thoughtful planting of decades ago. The mature rhododendrons and camellias. The bee-attracting pieris and the established copper beech hedge. There are other delights too, including euonymus, elaeagnus, choisya, viburnum and sarcococca.

And I have added my own touches, the masses of wild flowers, colourful bulbs, my veggie patch, not to mention the chickens and dogs.

When Mom fell ill, I abandoned my garden, along with my job, to look after her. In the 9 months it took Mom to die, my garden became a jungle. Last year, I gathered all my strength and made a fresh start. I was pleased with the results, but some areas still remained bare. In the autumn, I grabbed a bag of 100 bulbs and planted away. I cultivated the wild flower areas. 

After all the years of hard work, my garden is growing very nicely. It's not quite what Mom wanted for our garden, but I know she would have been very pleased.

Photography by Lesley Beeton

The banana press

Reading a GP's Twitterings made me realise that we have very different ideas about what patients should expect from GPs. GPs expect patients to fit into the numbers game (alcohol consumption, weight, blood pressure, cholesterol). Patients expect GPs to treat them as individuals. I do see both sides of the desk, being married to Dr B (who is not a GP but who does work closely with a number of excellent GPs). And having spent several years at medical school myself, perhaps I am not the best patient.

I actually wanted to call this post 'Is your GP making you sick?' but I chickened out at the last minute, in case he reads it and thinks I'm being overly-critical. Recently, there was a new government campaign about not ignoring the signs of lung cancer. Many GPs were aghast at the sentiment of the campaign, that being that prolonged cough could be cancer. They were concerned that more patients (a deluge) would demand a referral for lung cancer screening. In fact, what most patients want is to be taken seriously, for the GP to take a thorough history, even if they think they know the patient, and then to refer (or not) as appropriate. 

I have also already said how cross I am that GPs are planning to take industrial action on Thursday. This upsets and unsettles patients.

When we were preparing for Mom's death, I looked around for a support group, of similarly terminally ill people, who didn't want to go to hospice. Well, as far as we know none exists locally. And I think I know why. General Practice is not equipped for the emotional side of dying at home. Yes, they are a talented team of people who rally round with bed baths and pain relief but there was no emotional support. We found a hypnotherapist who worked with Mom to help her come to terms with her prognosis, and for that we are eternally grateful; but this approach was not endorsed by the GP and caused a delay in Mom starting this treatment, even though we paid privately for it.

I have recently mentioned this again, in response to a blog post about an article written by a Journalist who has recovered from breast cancer. I am so pleased for her and for the many women who do survive breast cancer, but there are so many people who do not survive cancer, and there is precious little support for those who know the battle is lost. Mom decided that hospice was not for her, and that meant we were on our own. And the point is, Mom's story is painful, but beautiful. Mom's story is about dying with dignity. Mom's story needs to be told.

I have offered my services voluntarily through a GP to support the terminally ill in practical ways in our community. The response: the terminally ill should try this* group, they may not suit everyone as they are overtly Christian (or words to that effect). There could be a much better way. The District Nurses already provide a wonderful service to the community but they are stretched, short-staffed - could volunteers help in any way? Perhaps administrative, preparing information packs, ordering home equipment, filling in forms? That would free up the nurses for caring. Could volunteers be trained to talk to terminally ill people in their homes, helping them and their families through the maze of jargon and paperwork that comes with this label?

Mom's story is close to home, mistakes were made in her treatment but we triumphed in the end. It is a powerful tribute to Mom. And it could help others. I would like to help others.

And the bananas? Well, I'm very frustrated by the lack of support, and the lack of understanding about the need for support, for the terminally ill. Banana is a polite way of saying bo****ks.

*anonymised

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Be clear on cancer: what the NHS ads don't say

Let me first be clear - I whole-heartedly support the NHS lung cancer campaign to know the signs and go to your doctor if you have a persistent cough. But ours won't be the first you've read, or the last, to say that our GP dismissed our concerns*. In Mom's case, the GP diagnosed gastro-oesohpageal reflux and prescribed omeprazole. 

Hibiscus, April 2012, Lesley Beeton

I first remember hearing Mom's cough early in October 2010. I suggested she see her GP and ask for a chest x-ray. When she saw her GP at the end of October, both she and the GP agreed it was 'just reflux' and if it should persist she would have an x-ray in January after her holiday to Australia. Mom had by this time had the cough for a couple of months, but had not said anything to us. She had been a heavy smoker, quitting in her fifties due to ill health. These two facts alone should have been enough to persuade the GP to refer her for x-ray. She did not. 

In November, Mom was concerned that she was retaining fluid and feeling a bit puffy. This we now know is a sign of lung cancer too, when it occurs with a syndrome like SIADH (a technical term which means that the body is unable to control the amount of sodium in the blood). The GP prescribed the diuretic furosemide. A blood test at this stage (recommended when starting this drug) would have shown that Mom's sodium levels were dropping.

It wasn't until three days before she left for Australia that Mom's struggle became clear. She had three nasty falls. The GP checked her out for stroke, and gave her the all clear to travel. A locum GP thought to request a blood test, which showed the decreased sodium, and the diuretics were stopped, but nobody wanted to take the decision to stop Mom from travelling.

I only found out about this after Mom became seriously ill. She and Dad decided not to tell me, so that I didn't worry. I wish they had told me. I know that in Mom's case, the outcome would probably have been the same, but if Mom's diagnosis had been made in November 2010, she would never have undertaken the long trip to Australia.

Mom collapsed two days into her holiday in December 2010. The horror of it was unspeakable. My Dad didn't understand what was happening. The doctors in Australia did an amazing job to save her life and stabilise her for travel back to the UK. They made the diagnosis of small cell lung cancer and sent Mom home for treatment. Her disease was already extensive, that is, it had spread. We were told that Mom's chemotherapy would only be palliative, to extend her life for a few precious months. Mom died in August 2011.

Please don't ignore the signs. Please insist on a referral for investigation. Not all lung cancers are the same. The ads on TV don't tell you this. They don't tell you that GPs don't think of lung cancer first. It's up to you.


*This post is not intended as a complaint or a rant against our, or any other GP. I have had my say, and been listened to, so I am satisfied that others will be referred more quickly. This post reflects my own opinion on the sequence of events in Mom's treatment. Following Mom's diagnosis, the treatment she received from her GP surgery was outstanding in every way, and this was acknowledged in a letter of thanks which I wrote to the local newspaper.

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A poem from Mom

To Lesley Dawn, my first born,

Fills me with love every morn.

Hope she'll be happy as a bee -

'Til the day she goes from me.

This little poem popped back into my head this week, my birthday week. The first birthday since Mom died. Last year, we celebrated my birthday with friends, at home with a Chinese banquet and extreme croquet, which went on after midnight as the weather was so glorious. So different from the cold, wet weather today. A little poignant, perhaps.

Mom celebrated with us last year. She had finished her chemo and had a CT scan; the tumours had responded, but not a lot. The doctors decided to wait and see, so all things considered, Mom was well and we all had a very happy time.

We knew, of course, that Mom wouldn't be with us this year, which made last year's celebration so special. And the poem? Mom wrote that poem in my autograph book, which she gave me for my tenth birthday. I don't have the book any more, but I do have this lovely poem.

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I'm missing my Mom

Perhaps I was a bit harsh last week. I was feeling particularly vulnerable. It’s my birthday this week and I’m missing my Mom. My Dad has been leaning quite heavily on me and the emotional strain is getting a bit hard to bear. I look at him and I can see his pain. He is so lonely, in his quiet house, with his burnt toast and new towels. He is being so brave, I wish I could do more for him. The truth is, I find it difficult going to his house, seeing it just as Mom left it. Seeing Dad trying to keep her plants alive. He has even tried to make some of her recipes. He tries to keep everything neat and tidy, and clean, but he even struggles to deal with the daily post, let alone keep on top of the financial stuff.

We knew it would be like this after Mom died. We shared the last five weeks or so of her life, as her body gave in to the lung cancer. She talked to me about it at length, with some humour, too. Dad depended on Mom more than he realised, although he always appeared to be the dominant partner. The worst part of Dad’s grief is that he will not accept help from anyone. He doesn’t want to inconvenience me. And I want to help. I need to help.

Birthdays, anniversaries and special dates are always going to be difficult. This is my first birthday since Mom died and I really don’t know whether to celebrate or ignore it. This is what grief feels like. This is why it feels different from depression. I know the tearfulness will pass after my birthday. I can see the future, and I am enjoying the new experiences life is giving me at the moment.

Tulip Orange Emperor, Lesley Beeton

When you are ready for it, you will see the positive in your life. Special people will brighten your day. New experiences will come your way. Be open to the possibilities. It’s another way of saying de-clutter your life, be ready for the next chapter.

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Why is cancer always in the news?

A cancer story on the news always makes me stop and listen. I think it's because I'm hoping for that cure-all breakthrough. The one thing that will stop all cancers in their tracks. I know that's highly unlikely but that's the nature of the disease. And the cancer charities know it.

In truth, heart disease kills more people than all the cancers together. And it's not always treatable either and it can kill faster than cancer, too. The British Heart Foundation does fantastic work promoting healthy lifestyles and funding research, but it's clear that the media find that cancer survivor stories sell newspapers.

Well-being is ... watching waves wash up the beach,
Ka'anapali, Lesley Beeton

I'm torn here, as my recent research career has been in cardiovascular disease and I'm married to a cardiologist. But, my Mother died of small cell lung cancer, an aggressive disease, the treatment of which has not changed in twenty years. The prognosis for this type of cancer is six to eight months, Mom died after nine months. 

So, in answer to my question, I think cancer makes headlines because we fear it. We fear the treatment, the long journey back to well-ness. We fear losing our hair, being ill, not knowing who we are any more. 

And strangely, heart disease is less feared. Treatments and interventions have come on in leaps and bounds. Doctors seems to perform miracles with diseased heart muscle. And when medicine cannot help after a heart attack, we can say 'At least our loved one went quickly and didn't suffer'.

There are two other points to make before I end. First, many cancer patients also have complicated heart and/or other medical conditions which must be managed throughout the treatment for cancer. Secondly, cancer treatments can cause heart disease, although many are temporary and reversible.

Remember your heart health, live a balanced healthy lifestyle, understand how your family history of heart disease can affect you (I have blogged here on this too). Because heart disease is not just an old man's disease.

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UPDATED : RIGHT TO DIE?

Updated 06 January 2012
I had to update my post to comment on the continuing debate on right to die, this time sponsored by Sir Terry Pratchett. The headline in The Sun today says 'Let us all die with dignity and comfort'. I agree. But there is another way, if assisted dying is not for you, or one of your loved ones.
Compassion in Dying is one place to get more information on the choices facing a terminally ill loved one. It is a difficult time for everyone, but with love and courage, dying at home with dignity is not only possible, it is positive.


I was so sad to hear Geraldine McClelland's story on Sky News today. To Geraldine's friends and family, my heartfelt condolences on your loss.

I too lost my Mom to lung cancer this year, and I would like to say to other cancer sufferers and their families that there is another way. This post is not a debate about assisted suicide - I cannot possibly say how I would have felt in Geraldine's situation. My post today is about our positive and dignified approach to my Mom's death.

Mom was only 66 and was not ready to die. Mom's type of lung cancer was caused by years of smoking as a young woman, growing up in the 50s and 60s, when smoking was considered stylish and cosmopolitan. Back then, Mom had everything. She had her own car, and expected all mod cons when she and Dad married and moved into their first home. Mom worked until she was 63 and was very happy to be retired, planning all the things she wanted to do and places she wanted to see.

Mom's cancer took her life in nine short months. These were desperate times for us, but Mom did come to terms with her terminal illness. And because of that we were able to plan for her death. We never considered assisted suicide. Mom opted to die at home and we were supported by several agencies and wonderful people, who we called 'Mom's angels'. Mom signed a do not attempt resuscitation order under her GP's guidance. The District Nurse team provided a hospital bed, commode, nursing and caring skills at home. It was explained to us the options for increasing Mom's pain relief as her death approached. This included the use of a syringe driver, simply an injection of pain relief given over 12 or 24 hours. Mom didn't want this and it was never used.

Mom was helped by an incredible hypnotherapist and towards the end of her life, she was clear about her wishes, wrote letters to everyone and planned her funeral. She was also calm and pain free. I had five beautiful weeks with Mom at the end of her life, so precious, and I am so grateful for that opportunity.

On the day Mom died, she had said her goodbyes and we had all given permission for her to go. I don't think she knew how bad her disease had become, but the cancer had grown out of her back, she had lost the use of her right arm and she could hardly see. She was conscious and could hear us but couldn't speak. Her clinical team wanted to give her pain relief through the syringe driver. Mom indicated NO! to us and died quietly within the hour.

Afterwards, we picked flowers from her garden and laid them on her body.

The point is, Mom confronted her fear of dying. And through the support of her GP and District Nursing team and hypnotherapy, Mom was a delight and a pleasure to care for. She enriched our lives. I urge families to ask for help. There is another way, and it can be beautiful and pain-free and dignified.

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CHEMO OR NO CHEMO?

Perhaps I'm just more attuned to it, but I seem to be hearing this in all sorts of places. And it's making newspaper headlines, too. I think it's right that everyone has the opportunity to discuss all treatments options, and I do understand the toxic effects of chemotherapy, so it's not to be undertaken lightly. But what are the alternatives? Change your diet? Meditate? Exercise? Yes, all three are useful but what of the big cancer-beating treatment? The one thing that will whack those cells into submission. If you've had surgery and radiotherapy and the tumours are still there, chemotherapy can offer the next line of treatment. 

And in Mom's case, the first three rounds of chemo were well-tolerated, reduced the size of the tumours by half and kept the paraneoplastic symptoms at bay, so that Mom could enjoy life, have a holiday and not think about having cancer for a few months.

The fact that it didn't work in the end is something we have come to terms with, but on balance I would still say I am satisfied with the chemotherapy protocol Mom followed, and I am grateful for those months with Mom.

The problem is that the oncologists are so busy and often only the registrar is available in clinic, so discussion is limited. And there is limited funding for staff to spend as much time as needed with patients and their families. That's partly why I started this blog, to try to raise awareness of the options, the questions to ask, where to get help, and for others to know that so many families are going through the same thing. It doesn't have to be a struggle, God knows the treatment is bad enough.

Stay positive, listen to your body, surround yourself with love and don't forget the treats.

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Guest post: exercise against cancer

One of the great things about blogging is connecting with like-minded people all over the world. Quite by chance, David Haas read my blog and asked if he could guest post. Check out David's credentials here and read his post below. Thanks, David.

Link

Benefits of Exercise in Your Fight Against Cancer

When you’ve been given a cancer diagnosis, the last thing you often feel like doing is exercising. Cancer treatment can also sap your energy. Chemotherapy, in particular, causes patients to feel run down—rather than feeling like running around the block. Exercise, however, can help ease the stress of going through cancer. The body fat reduction you get as a result of exercise can even lower your risk of recurrence of some types of cancer.

Each stage of the cancer journey can produce intense amounts of stress. When your doctor first gives you a cancer diagnosis and every time you wait to receive a test result, the stress hormones adrenalin and cortisol course through your system. Your body is preparing a fight-or-flight response, but the enemy lies unseen inside your body. When adrenalin and cortisol surge, your body wants to move, and the action of moving causes your stress hormones to recede. Exercise also stimulates the body’s production of endorphins, which naturally help relieve pain and elevate your mood.

Some people find rhythmic and repetitive exercises such as jogging or using an elliptical machine to be especially relaxing. Harvard Medical School’s newsletter calls this type of exercise “muscular meditation.” Some patients whose cancers involve the lungs, such as pleural mesothelioma and lung cancer patients, may find intense exercises too taxing during treatment. These patients can still benefit from a walking program or Tai Chi, with its slow, graceful movements.

Some cancer patients prefer the same kinds of sports they would use if they were being physically attacked. When they engage in sports like martial arts or kickboxing, they envision themselves beating cancer into submission. As patients become physically stronger, they feel stronger to fight against cancer as well.

While exercise isn’t a cure, it can help prevent a recurrence of some types of cancer. Body fat produces the female hormone estrogen, which often plays a role in developing breast cancer. Exercise causes people to lose body fat and produce less estrogen. One medical journal, Cancer Epidemiology Biomarkers and Prevention, cites recent studies that show a link between high body mass index and other types of cancers, too. Besides breast cancer, obesity is associated with a heightened risk of ovarian, endometrial, colorectal, thyroid, renal, gall bladder, pancreatic, and esophageal cancers. In addition, multiple myeloma, non-Hodgkins lymphoma, leukemia and adenocarcinoma all have a correlation with obesity.

David Haas 2011

MOM WOULD HAVE LOVED THAT

We've been saying that a lot lately. Funny, but we used to say it a lot about Granny, too, as in, Granny would have loved that pudding. In the days and weeks after Mom died we were so overwhelmed by her illness and death, that I personally couldn't think of Mom as she was in the months and years before she got ill. Now, nearly fourteen weeks since Mom passed away, I am happy to say that Mom would have loved all sorts of things that we have been doing lately. She would have loved the current series of Strictly Come Dancing, especially Harry Judd. She would have loved watching Roger Federer win the ATP World Tour Finals. And she would have loved hearing about the wonderful black tie retirement dinner we went to on Friday night.

It was one of those unashamedly old-fashioned, understated posh events. There were some charming older men with their quiet wives, not in black tie but in smart suit. They represent a dying breed of professionals, loved and respected. I enjoyed meeting them. I was seated next to an eccentric chap, so bright he could be a little weird, but thoroughly entertaining in an anarchic sort of way. The food was delicious, no flash snails in porridge, simply smoked salmon, roast lamb and vanilla creme brulee. We were very satisfied. 

And then came the harpist. By Royal Appointment to HRH The Prince of Wales! She played beautifully and chatted about her travels with the Royals. Mom would have loved it.

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IT'S NOT WHAT YOU EAT...BUT IT DOES HELP

I heard Polly Noble on telly this morning. She makes a lot of sense but changing your diet and lifestyle after a cancer diagnosis cannot shrink tumours. Having a sensible, balanced diet and an active, happy lifestyle will help to protect against many but not all illnesses, and cancer can strike anyone. Polly has added to the debate about chemotherapy treatment with her new book, but the oncologists have heard and seen it all. Be prepared to ask the difficult questions about the expected outcomes from your cancer treatment.

If I'm not making myself clear, it's because I'm trying to be sensitive and open-minded, but to be honest, there just isn't the science to support the argument for nutrition treating tumours. There, I've said it, and I'm not sorry. Tumours need to be cut out or reduced in size, and there are almost endless combinations of surgery, radiotherapy, chemotherapy and biological treatements, for all different cancers for the oncologists to try. 

Holistic and alternative therapies are important, though, because they very often sit alongside the conventional therapies, to support patients and their families. Ideas with food are so important because they give everyone something to do and think about, other than cancer diagnosis and treatment. Sharing a healthy meal as a family gives a sense of normality.

Back to Polly's approach. Polly recommends a low- or anti-inflammatory diet. Now, this isn't entirely wacky. Sufferers of irritable bowel syndrome, for example, know which foods contribute to a flare-up of their condition. But it's easy to see the connection between food and irritable bowel. What is less obvious is the link made by Polly between inflammatory foods like refined foods, high salt, sugary foods etc, and say lung cancer. Yes, cancer is an inflammatory condition, but it is associated with a chronic low-level rise in markers of inflammation in the blood after cancer has already developed. So, eating an awful lot of oily fish and blueberries may reduce these markers of inflammation but won't affect the cancer.

Of course, these foods are really good for us and should be included in every healthy diet, but don't put all your hopes on a wonder cure for cancer. It's almost always hard work beating cancer. Use all the resources you can. Eat well, live well, surround yourself with positive people, find your inner peace, see yourself well, but don't give up on conventional treatment.

You are all in my thoughts.

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HOW LONG HAVE I GOT?

That's a question Mom never asked, although she really wanted to know the answer. Sadly, the prognosis for Mom's lung cancer was six to eight months from diagnosis, even with chemotherapy treatment, and that hasn't changed in over twenty years. It's not through lack of trying to find better treatments for small cell lung cancer, it's simply that by the time it has been diagnosed, it has often spread beyond the lungs and chest cavity and therefore surgery is not an option.

A report this morning shouts the headline that median cancer survival has increased to six years over the last forty years. That means that roughly half of all cancer sufferers will survive for six years after diagnosis. Is this worth shouting about? Some people will live longer than this and die of something other than cancer, but some people will not live past the first year following diagnosis. It's a cruel lottery.

Ellie Jeffery has updated her blog today and she is starting a new chemotherapy drug to help her fight off secondary breast cancer which has spread to her brain. Ellie is twenty-eight years old. The statistics for this drug, eribulin, show a life expectancy of 13.1 months compared to 10.6 months on an established drug.

Keep Ellie in your thoughts.

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...IT IS NOW

Mom died on 27 August 2011. 

After the chemotherapy was abandoned in July, Mom had a course of radiotherapy to treat a tumour on her spine and underwent pleurodesis to stop her drowning in fluid around her lungs. To those of us who helped Mom every day, we knew that the tingling in her legs wasn't a good sign, and the tumours in her lungs were producing so much fluid that Mom's right lung was squashed in her chest. These two interventions made Mom comfortable and pain-free. We talked about dying and Mom decided to die at home. 

The wonderful community health team provided a profile bed, commode, and daily personal care. They implemented a plan for making sure that Mom had a dignified death in the community with a do not resuscitate order preventing any last minute heroic interventions by paramedics.

Mom stopped eating on the Friday and was semi-conscious on Saturday. The Community Nurse took us through the Liverpool Care Pathway, a model for end-of-life care. I took the dogs to her to say goodbye and then Dad stayed with her. She just took a last breath and that was that.

THEY THINK IT'S ALL OVER...

June 2011

The news was bad. The tumours had not responded, not even a partial remission. So everything we had read about small cell lung cancer (SCLC) was true - it's aggressive, chemotherapy is only palliative, prognosis 6-8 months. A horrific diagnosis. We put a brave face on it, attended all the oncologist appointments, listened to the registrar telling us the obvious, encouraged Mom to have all the chemo. We did everything we had to, we did our part, we put our hearts and souls into living with Mom's cancer.

The oncologist said there was another chemo regime to try. Mom had already had 6 cycles of EP (etoposide and cisplatin) over 18 weeks from Christmas to Easter, and she was still alive. Without it, she would not have made it to Dad's birthday in February. So we said OK, we'll give CAV* a go, how bad could it be...
(* C = Cyclophosphamide A = Doxorubicin (also called Adriamycin) V = Vincristine 
Cancer Research)

It was awful, Mom was sick all the time, getting weaker and weaker, and by mid-June we knew the game was up. The oncologist withdrew treatment and gently suggested we 'get the Macmillans involved'.

Actually, we already had the Macmillans involved. Mom's GP practice had set this up in January, via the District Nurse service. Our local facility was the Beacon Service.

SCANXIETY

They call it scanxiety on the US forums for lung cancer. They know all the jargon, chemo protocols and rad regimes. In the UK, we are knocked-down by the diagnosis, dragged along by the gruelling treatment, then 18 weeks later we are told it all rests on the FINAL CT SCAN.

My Mom is 66. She was diagnosed just before Christmas 2010 with small cell lung cancer with liver metastases. At the time of her diagnosis she was on holiday in Australia visiting my brother, and we were in the grip of the winter snow storms. Within 10 days of her diagnosis, she was home, hooked up to the chemo drugs and all our plans for a quiet Christmas thrown into disarray - but that's another story.

For now, I want to start this blog to document how we are all living with Mom's cancer and perhaps hook up with others who are going through the same journey as we are.

Wish us luck....