Saturday, 23 February 2019

Weekly Discussion Summary ~ Cancer doesn't define us

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Cancer doesn’t define us.

Our discussion this week allowed us to celebrate who we are, and all our extraordinary experiences and abilities as we introduced ourselves without mentioning the C word. Our cancer is part of us but it doesn't define us.

We chose this - one of our most popular topics - as a way to welcome and get to know each other better. This was particularly timely as we have welcomed more than sixty new members to our private group following our post on the impact of hormonal treatment and brands. These women will now be in a position to benefit from, and contribute to, our work to build resilience following a breast cancer diagnosis.

In our private group we are united in that we all share that breast cancer diagnosis. Some of us have a primary diagnosis, others have experienced a new primary breast cancer, or recurrence and some of us have secondary breast cancer. We warmly welcome all women living in the UK with a diagnosis of breast cancer and we support each other through common experience and shared knowledge. We share our highs and lows, debunk common myths, keep an eye on the latest developments in diagnosis, screening and treatment, and take part in research.

Together we can make a difference.

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group, please send us a private message.

Thank you for your support!


Saturday, 16 February 2019

Weekly Discussion Summary ~ Hormone treatment brands

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“I was shocked at the difference a brand could make.”

In our discussion this week we explored the apparently wide-spread but largely unreported experience of some women in relation to the way that differing brands of hormonal treatments can lead to a significant increase or decrease in particular side-effects. 

While Tamoxifen is often described as a ‘well tolerated’ treatment, particularly in comparison with harsher treatments like chemotherapy and radiotherapy, it is not helpful to view hormonal treatments as the ‘soft option.’ Our members – women with primary or secondary breast cancer – regularly report a wide range of debilitating side effects including joint and muscle pain, hot flushes, disturbed sleep, impaired sexual health and, as we know from a previous discussion, impaired cognitive functioning. What is less recognised is that very many of us find that these side-effects increase, or decrease, depending on the brand.

Our experiences as a group were wide ranging and varied, both in terms of the named generics we had been offered, and the way we responded to them. Generally speaking, the main brands of Tamoxifen used by us were manufactured by RelonChem, Wockhardt, Genesis and Teva. 

As we shared our differing experiences, a picture emerged where many of us had noticed specific and unpleasant side effects due to changes in our brand, but also that these effects varied considerably between us. For instance, some of us might find one brand made us feel so sick that we could not take it, another really caused us to experience vaginal soreness, or yet another caused an unbearable increase in our hot flushes. Although no one brand stood out as being preferred by the majority of us, what was clear was the significant impact on us of changing our brand of medication. Whether this is because we become tolerant to certain brands after a time, so it's the chopping and changing that affects us, or whether it's the make-up of the brands themselves that affects us, is unclear. 

Those of us taking Aromatose Inhibitors like Letrozole, shared similar effects, although here a huge variation in cost also plays a part in availability and willingness to prescribe. A few of us shared that we experienced no discernible changes between brands, but for the vast majority of us, these variations had a negative impact on our health and wellbeing and in a few instances, these side-effects could make the difference between continuing with our hormonal treatment and stopping it. It was also clear that anyone struggling to manage side-effects should consider changing their brand to see if it is easier to tolerate.

Given the effectiveness of hormonal treatments, and the increasing longevity of prescribing regimens, we felt that our experiences needed to be taken more seriously by medical professionals.    

A few of us found our pharmacists and GPs sympathetic to the variations in our response and that they were willing to try to help us to source our preferred brand. Others reported finding that our experiences were completely dismissed, or, that we were told that it was simply not possible to source one brand on a regular basis. Sometimes despite the support of both GP and pharmacy, particular brands become unobtainable for no apparent reason. 

In the absence of research, some of us had developed our own theory for the wide variations in side effects, even going as far as listing brand ingredients to use as a basis for comparison. The most common hypothesis among us was that different manufacturers use different fillers, for coatings for instance and it might be possible that that these different ingredients subtly affect the way that the medication is being absorbed by our bodies, leading to significant changes in our tolerance to side-effects.

Interestingly, this phenomenon - whereby patients experience a tolerance to one brand of medication - seems to be more widely accepted in relation to other conditions, for example treatments for epilepsy and even HRT, where members reported having more success in obtaining continuity of brand.

As far as we were aware, there is no standard protocol in place in relation to the brand of medication we are prescribed. Indeed, several of our pharmacist members very helpfully explained that GP’s are trained not to specify a generics manufacturer (although some do) due to the expectation that there is no difference between generics brands, and that most of us won’t be aware when an off patent drug is prescribed. Quite reasonably – on the face of it at least – the expectation from the NHS is that pharmacies should be using the cheapest brand at any given time to protect our cash-strapped health service, which then also makes it difficult for pharmacies to offer their patients any continuity of a particular brand. 

Many of us did not know that even if our Oncologist specifies a particular brand – for instance if we request it due to intolerable side-effects – that it is actually our GP, as the person in primary care, who is responsible for our prescribing. Finally, some of us (hesitantly, because the focus of our group is the psychological impact of breast cancer, not politics) expressed concern about the possibility that Brexit may cause supply difficulties which in turn may mean that we may increasingly face being given different brands of generic than we are used to.

We would like to know why it is that different brands have different effects across individuals? Why it is that ingredients are different across brands? Our resounding conclusion was that this is an area where more research and information is needed.

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group please send us a private message.


Saturday, 9 February 2019

Weekly Discussion Summary ~ I'm Sorry

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“I’m sorry.”

Why do so many of us feel the need to apologise for having breast cancer? 

This week in our discussion we thought about how much we find ourselves saying sorry for our situation and our needs.

Why do we say sorry for needing to practice self-care? For not being able to keep up with a hectic social life? For needing a little extra support at home or at work? 

Anyone would think that we got cancer on purpose, that somehow it’s our fault. 

We wonder if we're wasting the time of our medical team, being a nuisance. We apologise.

Many of us ask what we did wrong - did we drink too much, eat too much, stress too much? If we'd lived differently would we have escaped the disease? 

We reassure people around us when cancer is mentioned, telling them we're fine, OK, even when we're not. We play down our side effects, and do more than our fair share to make sure no-one thinks we're “using” our cancer diagnosis as an excuse. 

We don't voice our needs because we don't want to appear vulnerable, we don't want to hurt our loved ones by allowing our fears out into the open. We apologise if we want to talk about our cancer, feeling that others must be bored of it by now. 

Once we've had a breast cancer diagnosis, it's always there in the background, and, for those of us with secondary cancer it's right in the foreground, as treatment is ongoing. We don't want to be a burden so we tell our loved ones we are sorry for being ill. 

Naturally, we experience intense feelings of distress. We apologise for tears or outbursts. We apologise for not being on top of the world, for living life to the full. We feel guilty if we allow our sadness in, even more so if we dare to express it or let it get us down. 

I'm sorry to ask......(for a lift for the kids, for a bit of help with the shopping, for a listening ear, a hug.) 

I'm sorry......I'm always so tired, so forgetful, not up to going out today. 

I'm sorry.........that I look so scary with no hair, I'm sorry I can't wear skimpy tops and high heels anymore, I'm sorry I'm so fat and ugly. 

I'm sorry, boss, that I need to ask for reasonable adjustments in order to continue working for you. 

I'm sorry, dear partner, that our intimate relationship is affected by how I feel about my appearance and by the physical changes in my body. 

I'm sorry kids, but mummy can't take you to the park today because I need to rest. 

Self-care becomes a critical task to avoid collapse, and apologising for it all the time can spiral us down into feeling very low and depressed, and it can be self-destructive. 

We say sorry when we break the news of our diagnosis, we're sorry to be the bringers of bad news and sorry for our families and friends who now have to worry about us.  We're sorry that our treatment means activities are put on hold, work may have to manage without us, holidays may be postponed.  Once we finish treatment we apologise for not being able to do everything we did before, as treatment will have changed us. Our energy levels and priorities may be different and we modify our lives accordingly. This is frustrating for many of us, because as we adapt, so others around us must fall in line to accommodate those changes. More guilt, more apologies.

Sometimes other people say hurtful things, such as suggesting that having breast cancer is lucky because it's a 'good cancer' to have. Some are dismissive, as if cancer is a bout of flu, we're better now, so how about we just get over it and on with it? This kind of attitude can be very upsetting. We try to counteract it in our minds, as logically we know that it isn't our fault we got ill, but so many of us feel we fall into victim mode, saying matter-of-factly that we are sorry for any inconvenience caused. 

Some of us have learned not to start every sentence with “I'm sorry.” We've started to accept that we can't control everything and everyone. We do our best and we shouldn't ever apologise for that. 

Perhaps we should try different vocabulary, maybe saying 'I'm sad I can't join you for that day out in the city but my energy levels just won't support it'. This has a different feel. Some of us are learning to accept that cancer ‘chose’ us and we can't control its spread and that's that. Cancer doesn't discriminate, we didn't ask it along for the ride. We accept we may feel sad, angry, fed up. We understand that the only thing we have control over is how we react and behave in response to what happens to us. 

A good tip is to notice ourselves saying sorry, perhaps to count to 10 before we apologise. We could imagine what we might say to our best friend if she were going through the same thing: would we blame her and expect her to apologise? 

No, we wouldn't, in fact we'd be more likely to offer tea, cake and a big hug!  

Our need to apologise comes from inside us, not from others, and we can help ourselves by realising that our loved ones want to help us to be as well and happy as can be. Our apologies don't help us to feel better, in fact they reinforce our vulnerability and lack of self-worth. They can become so habitual that we start saying sorry for existing. 

If you are a woman living in the UK with a cancer diagnosis and you'd like to join our private group please send us a private message via Facebook.



Saturday, 2 February 2019

Weekly Discussion Summary ~ Our views about the privileges and challenges of aging

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"Do not try to live forever, you will not succeed.” *

How does a diagnosis of breast cancer impact on our views about the privileges and challenges of ageing?

This was the question we focused on in our weekly discussion. Life is a privilege, and one that is often not fully appreciated until it is threatened. When we are diagnosed with a life-threatening disease such as breast cancer, that privilege is brought into sharp focus. 

We are all women with a diagnosis of primary or secondary breast cancer. We are women of all ages and we have all faced our mortality as part of our illness, and our fears that our lives may be shortened by the disease are real. For women with secondary breast cancer, their perspective is shaped by the knowledge that their disease isn't curable, although treatments often halt its progress for many years. 

If life is defined by the spirit, a life well lived, then does the length of that life matter? Is living to 'a ripe old age' a valid goal, or a vain one? If we know someone who is dying, don't we want them to stay, to live, for as long as possible? Is it a trait of the human spirit, to want to live a long long life? If so, then why do some people choose to end their lives, by suicide or Dignitas? 

Our views on ageing were rich and varied, with some of us wanting to live as long and as well as possible, while others value quality over quantity. A life of no regrets, with no time wasted. Some of us throw ourselves into a busy life, with bucket lists and living each day as if it were our last. Others find this approach exhausting and strive for the peaceful and the ordinary. 

We talked about our elderly relatives, of illnesses in old age which may change people, such as dementia. Here, our views and feeling are shaped by our experiences. The suffering we see, the loss of control, and the challenges of living with reducing abilities and having the resources to adjust have parallels with our experience of cancer. 

Some are preoccupied by their worry they are a burden to others, the human spirit does appear to cling on to life, through dementia, immobility, pain. If we have cared for elderly relatives who have been unwell (and for those in the caring professions who work with the elderly), we are confronted with these challenges and their impact on our own values and our feelings about cancer come rising to the fore - we may decide that growing old and becoming dependent on others isn't something we want. When quality of life is poor, how do we find pleasures? Does there come a time when decline leads to a desire for life to be over? We may witness frustration, and fear being old and infirm. However we can try to cast this aside and focus on living every day as best we can and being happy. 

We feel that breast cancer ages us, in that our physical and cognitive capability may be reduced following treatment, at any age. Harsh treatment regimes leave us depleted and adjustment is difficult. For those of us with secondary breast cancer our treatments are ongoing and can be debilitating. We may feel old before our time, which may limit our options, restrict our choices. 

Some of us feel that our diagnosis gave us a second chance, we've reassessed our priorities and our values. Compassion and kindness lead to contentment for many. For others, death feels closer because of our diagnosis, we no longer feel the invincibility of healthy youth, death is no longer abstract. Some of us make wills, plan funerals, declutter and tidy up. We want to be ready. Many of us celebrate life with rituals to mark the passing years, perhaps with lavish family gatherings and big birthday parties, while others let birthdays slip by quietly. 

We talked about our faith and the different ways of coming to accept our suffering, our mortality, our reason to be on the earth and how living in the moment might help us. 

We want to get our vitality back and be the best we can be, without counting numbers. We can't control what happens to us, only how we respond. 

Whatever our views, appreciating our lives was a key theme, whatever age, with many citing simple joys and everyday pleasures as being of huge importance, alongside gratitude. 

*George Bernard Shaw

If you are a woman with a breast cancer diagnosis living in the UK, and you would like to join our private group, please send us a private message via Facebook.