Sunday, 18 March 2018

Weekly Discussion Summary ~ Managing Physical Activity

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This week our discussion explored the different ways we exercise and manage physical activity while managing treatment and its side-effects.

Naz explained that research has repeatedly shown that exercising brings huge benefits - it enhances our mood and can make us feel better about ourselves; it also seems to have cognitive, physical, and longer term psychological benefits (e.g. for managing acute depression and anxiety). Naz told us that more recently, exercise has be shown to increase neuro-plasticity - the way our brain neural connections can grow and increase processing efficiency - what Naz called, 'a healthier brain'.

When we think of 'exercise' a whole range of activities come to mind, yoga, Nordic walking, Zumba, Fitbit, to name but a few. Our discussion, which included women with primary and secondary breast cancer, highlighted that the way we interpreted 'physical fitness' and 'physical' activity varied considerably, some of us are serious runners, swimmers and cyclists for instance, whereas others, while less 'athletic', were no less active, perhaps riding, or gardening, for instance. We realised that some exercises appeal to us more than others, depending on interest, energy levels and past history of physical activity. But, a number of us shared that either we did not enjoy physical pursuits, or, we felt that our struggles with fatigue, pain or other side-effects were just too huge a barrier to overcome.

So what can we do to help ourselves to increase our activity levels and fitness?

Firstly, we need to make the decision; our mindset is everything. Plan and stay focused.

Doing something small (however small), everyday, is absolutely better than doing nothing. Whatever our activity levels, its intensity and duration can be changed to suit us.

Walking is a great weight bearing exercise and doing a ten minute walk a few times a week is a good start. Even better, make it a brisk walk. Likewise, swinging the arms or including some inclines will add in a little more challenge.

Psychologically, it's important not to fall into the following traps:

1. Beating ourselves up and feeling stressed if we don't attain the ‘targets’ we set ourselves.

2. Comparing ourselves unfavourably with our peers and what others achieve.

3. Comparing what we can do now with what we used to be able to do and feeling frustrated.

4. Giving ourselves a hard time if we 'crash' (as a result of illness, fatigue, low mood, stress) and when we feel like we have to start again.

5. We should try not to undermine our own abilities and accept that what works for us may not work for another - we are all different.

6. If we can, we should try to set ourselves small, challenging increments in our exercise (whatever that is) and push the boundaries of our comfort zone. This will aid us in building our strength and stamina.

Although there is a lot of advice for the general population about how to improve fitness and activity levels, it's not targeted enough for those of us struggling with the physical and psychological effects of breast cancer and its treatment. We need help - tailored advice and support adapted to suit our specific needs.

Although Naz advises caution on the findings, here's an interesting link to the NHS on exercise:…/exercise-most-proven-method-to-preven…/

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 via our facebook page

Sunday, 11 March 2018

Weekly Discussion Summary ~ Intimacy and Relationships

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It can feel like breast cancer robs us of our womanhood, profoundly changing our intimate relationships - some deepen, some become fragile, some break.

In this week's discussion, we shared how our breast cancer diagnosis had impacted on partner relationships and intimacy.

Physically, breast cancer treatment brings many changes in addition to the obvious one - surgery to remove the cancer. Treatments such as chemotherapy and radiotherapy have long term side effects such as fatigue and pain. Ongoing hormone treatments and invasive surgery also impact on our reproductive system and sexual health inducing early or prolonged menopausal symptoms such as a loss of libido and vaginal dryness, which can lead to painful sexual intercourse.

Breast cancer calls into question our relationship with our bodies, impacting on how we feel as emotional and sexual beings; we are left confused, vulnerable and some of us shared that we felt unattractive and undesirable. An understanding partner may cease to want intimacy for fear of hurting us; a less understanding one may simply walk away. We struggle to know how to communicate. Many of us mourn the loss of libido and our once satisfying sex lives feel like a thing of the past, and although in many instances we continue to have a loving relationship with our partner, the lack of intimacy makes us feel very sad.

For those of us with a partner, some receive strong support, a partner who loves their new body without question, and with patience, a continuing sexual relationship that remains satisfying. However, many of us reported the opposite: a partner who was no longer interested in us sexually, a partner who did not want to talk about sex, and, for some of us a partner who walked away from us when we were at our most vulnerable.

Single women face many challenges when meeting someone new, starting with how to tell them about the cancer. They’re going to find out someday when intimacy reveals a body that is different. Whether we are scarred, flat chested, lopsided or reconstructed, our bodies are healing and hurting, and our head is often full of emotional pain. However, for those who had overcome these hurdles, the experience of intimacy with a new partner can restore their faith in their body’s ability to feel pleasure.

Couples counselling may help floundering relationships to flourish again. Some women had met new partners following breakups just before, during, or after treatment. These women bring hope to those of us seeking new relationships, telling us that the right partner won’t mind how our body looks but is little comfort to those of us struggling to accept our new bodies and are daunted at the prospect of being on our own forever.

Communication, self-compassion and self-help can help us to maintain our relationships in the longer term. Our diagnosis impacts on our partners too. We need to somehow find away to adapt individually and together in the face of the changes that breast cancer imposes on us. We heard that lubricants and medications for vaginal dryness and pain are available, via GP, over the counter and online, and can make a huge difference.

Our discussion included women with primary and secondary diagnoses, and for the latter, treatment may be continuous and ongoing. Some reported a strengthening of relationships through the shared experience of bad news, bringing them closer as they seek an intensity of experience with their partners as in all areas of life. Communication about what really matters can become easier. Or, the opposite may be true, with what really needs to be said remaining under the surface.

Whether we were single, had an understanding partner, or our relationship was floundering, we shared an experience of loss and adjustment, not only during our active treatment, but many years afterwards. Loving ourselves may be difficult at the best of times, but when we’ve been through the trauma of a serious life-threatening disease such as cancer, we must, in our different ways, mourn the loss of the woman we used to be and the woman we thought we might become. Holding ourselves in self-love and believing we are worthy of the love of another may be helped by being kind to ourselves, giving ourselves little treats and big ones, from a new lipstick to a makeover and photo-shoot.

Whatever our experience of intimate relationships, it is clear that the support and sharing of our experiences and feelings was hugely valuable, even for those who found it too painful to participate. We learned practical ideas to help and found out that none of us are alone in our struggle.

This article may be of interest:

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 via our facebook page

Saturday, 10 March 2018

Lymphoedema Awareness Week 2018 Day 7 ~ Summary

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Although our lymphoedema project is coming to an end, the amazing women who've taken part in our project will continue to live with lymphoedema.

Over the last week, we've heard about both the similarities and differences in the way that our lymphoedema impacts on our physical and psychological well-being.

Our lymphoedema may present itself in unique ways, but our stories highlight the same experience of poor awareness of health practitioners, including GPs as well as a lack of timely and accessible treatment and support. We've also heard just how debilitating repeated bouts of cellulitis can be for those of us whose lymphoedema is particularly severe. But what stands out perhaps most of all is our resilience, the way we adapt and the way that we reach out and support one another by sharing our experiences and what we've learned.

Please join us in thanking all the women who so generously took part in our project - Anita, Bal, Carol, Emily, Jackie, Jane, Jennie, Lorna, Lynn, Pauline, Rhian, Ruth, Serena, Suze, Tamsin and Vicky.

In our own small way, we hope to have made a contribution to the global efforts to raise better awareness of this condition.

Lymphoedema Awareness Week 2018 Day 7 ~ Tamsin

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"What have you done to your arm?"


As we bring our lymphodema feature to a close, I thought I would come clean and share "my truth" about the reality of my life with lymphodema:

It's not 'just' an arm sleeve - it causes pain; it impacts on mobility and dexterity.

I don't only have lymphoedema in both arms and my right hand - I developed it in my upper body after surgery to remove an implant.

"No, I didn't do it playing rugby."

Marigolds have become my new best friends.

The biggest challenge, on a practical level, is using my right hand in a 'normal' way, doing things I used to take for granted like writing, brushing my teeth.

"No, I'm not an athlete."

Black my not be ideal. But while sand and beige have their place, a beige handpiece looks rank after a week of continuous wear, even with daily washing.

Wearing black compression hoisery isn't easy. Its a striking colour (if only I had the fashion sense to carry it off!) I wish I hadn't let one person's insensitive comment about it undermine my confidence for years.

Pebbles and Lymphadivas do not cater for those of us who need made-to-measure garments.

PS have you seen the price?!

"No, it won't get better."

I have more compression sleeves than I do pants.

Cellulitis can be mild or feel as horrible and frightening as neutropenic sepsis. I'm almost as afraid of infection as I am cancer.

I'm frightened of mosquitos.

Putting on my compression sleeves is my new morning workout.

I put my sleeves on just before I leave the house otherwise it's impossible to brush my teeth and apply make-up or plait my daughter's hair once my sleeves are on.

Sometimes I'm late for work because I can't get my sleeves on.

I wear marigolds to cook and wash my hair.

I used to wear a marigold over my sleeve in the toilet, but I've taught myself to negotiate a toilet completely left-handed. If I'm in a public toilet I put my right hand in my pocket!

If you use disposable gloves instead of marigolds, don't buy the ones with talc inside......

A massage ball will keep hand swelling from going hard.

Manicures are a thing of the past - I constantly break my nails putting my sleeves on.

Ditto nail polish. Do not, repeat do not, apply nail polish in the morning.

When I'm self-conscious about going out, I think about how cool Rey looked in the new Star Wars film and pretend I'm wearing arm tights.

Now I can no longer wear rings or bracelets, I treat myself to unsual earrings that catch the eye.

Incredibly, and I never thought I'd say this, but the time has come when I count down the days before I can re-order new compression hoisery, and receiving not one but two, new made-to-measure compression sleeves in the post is thrilling!

Lymphoedema Awareness Week 2018 Day 7 ~ Vicky

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"I've always been aware of the risks and have managed to keep my arm safe for nearly 12 years....."


I wasn't planning on submitting a piece for this feature as my relationship with lymphoedema has begun only fairly fact on Wednesday, right in the middle of lymphoedema awareness week, I went to the clinic for the first time as it seems I have developed lymphoedema in my right arm.

Following lymph node sampling when nodes were removed from my right axilla way back in 2006 upon diagnosis of primary breast cancer, I've always been aware of the risks and have managed to keep my arm safe for nearly 12 years, never allowing anyone to use it for blood tests, cannulas or injections.

Nearly 3 years ago I was diagnosed with extensive secondary breast cancer in my bones plus one axillary lymph node and now following progression of the cancer into my liver, I have been on weekly IV chemotherapy since October 2017.

Around January this year I noticed my arm was slightly swollen and since then has gradually been getting worse with some pain and tightening of the skin. Just a couple of weeks ago after having various IV fluids in one day, I couldn't see my knuckles as my hand was so swollen!

So this week the lymphoedema nurse told me it seems I've been ticking along fine for years with a broken lymph system but it's only now with the onslaught of treatment it just can't cope. The problem is they are unable to use the active methods to try and clear the lymph from my arm as they wouldn't want to send it into the rest of my body while I'm on chemotherapy as it could cause a whole lot of other problems, so for now all we can do is try and stop it getting worse. She prescribed the only option available to me of a compression sleeve and glove, and whilst waiting for these I can only hope it stays fairly stable in the meantime.

It's through this group and particularly my amazing co-deputy of BRiC, Tamsin, that I already knew some of what lymphoedema involves and I can take tips and advice from those who live day in day out with this debilitating condition to help me through.

Lymphoedema Awareness Week 2018 Day 7 ~ Bal

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Just when I thought the ‘Cancer’ Journey was over! Along comes Lymphoedema Arm!

I was diagnosed with breast cancer in August 2015 and had surgery, chemotherapy and radiotherapy. I was never prepared for this kind of continued upheaval in my life, had I not had enough of being butchered/poisoned/burnt/drugged and now more endurance with pain after 2 years of being diagnosed with secondary lymphoedema?!

Lymphatic Obstruction
This is a blockage in the lymphatic system, which consists of lymph nodes and vessels that help drain excess fluids from the human body’s tissues, these fluids can carry toxins and other human waste products to your lymph nodes before your internal system can eradicate them.

Lymph nodes are everywhere, very tiny, small as a ‘’baked bean’’, glands that can be found in different parts of the human body, i.e. neck, groin and armpits. Glands are vital for the immune system, because they provide red blood cells that help beat infections in the human body.

So therefore if there is a blockage, this then causes swelling (fluid in the arms and legs), which results in lymphoedema.

You can be born with primary lymphoedema, a secondary condition is a complication with cancer treatment i.e. a mastectomy is the most common cause because during surgery taking away lymph nodes under the arm(s) when a cancerous breast is removed, prohibits fluid drainage and swelling under the arm and/or whole arm(s) & hand(s) can occur.

This can also be caused by treatment such as radiotherapy (tumours and scar tissues (from radiation and surgical intervention causes blockage).

My symptoms started in November 2017, I had constant tingling in my arm/hands, at first I thought maybe I have picked up something heavy like shopping bags or even washing basket! My arm was swollen and cording started in arm.

I asked my oncologist and he flippantly said it was not his problem, ‘go and get the surgeon to check it out’ or your GP!

Surprisingly my GP did not have a clue (even though she is a medical professional).

Guys Hospital London could not help either as I was not in their catchment area or referral from my GP was rejected.

At my routine 6 month medical check-up, I casually mentioned to my surgeon about the pain in my arm/hands. He started measuring both my arms and confirmed my fears, breast care nurse referred me to a specialist. (Fortunately all my treatment was private).

My consultant surgeon and breast care nurse did some analysis, i.e. measured both arms and came to the conclusion that one was bigger than the other, I could have told them that without all this fuss. Breast care nurse was very helpful and she referred me straight away to a private consultant who specialised in lymphoedema. It was a 45 minute drive each way. I had 6 weekly sessions of lymphatic drainage massage, this was a machine that looked like an iron which was moved up and down my arm for 45 minutes continuously and then over my right chest wall and right side/back. She carried out a manual massage for 15 minutes, it was extremely exhausting and was painful and made me lightheaded so when I used to get home I had to rest for a few hours after each session in order to feel better.

Specialist provided me with tips/exercises for long term maintenance for my secondary lymphoedema.

In my experience, my GP did not know of any clinics and asked me to ask the consultant surgeon/breast care nurse. Surely as a medical professional she should be better equipped/knowledgeable to support me and perhaps others in my situation?

Please help existing/future patients have access to information about who to contact and raise awareness, support and a successful outcome for all.

Together we will be stronger and safer for tomorrow and ‘thrive’ for a better future.


Friday, 9 March 2018

Lymphoedema Awareness Week 2018 Day 6 ~ Carol

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"My biggest frustration was my surgeon telling me that I can't have lymphoedema because they didn't do a full lymph node clearance....."


I was diagnosed with breast cancer early July 2012, hormone sensitive in the left breast. I had a lumpectomy and sentinel node biopsy in late July 2012. Around three/four weeks after this I went to my GP as I had a golf ball size lump in my left armpit. My lovely GP wasn't entirely sure, but the new practice nurse had just joined from the healthy legs and lymphoedema team, so she was called in to have a look. She could see very mild lymphoedema in my left arm and a referral was made to the lymphoedema team.

As I was still due to have radiotherapy, they were unable to offer any support other than advising about manual massage/drainage (I forget the exact terminology). An appointment was set for December for me to go back but because they hadn't booked me a series of appointments, treatment didn't start until January 2013 - which included laser treatment and kinesio tape (I loved the pink tape!).

I had another visit in the following few years and eventually had a sleeve prescribed for me.

In September 2016, I was diagnosed with DCIS in my right breast, so I opted for a double mastectomy without reconstruction. I had some challenges with swelling across my chest area and the lymphoedema team supported me with laser treatment and kinesio tape. My right arm is okay, but we are looking at preventative treatment.

My biggest frustration was my surgeon telling me that I can't have lymphoedema because they didn't do a full lymph node clearance; and then when I had revision surgery last December, I ended up arguing with the anaesthetist who didn't accept that he couldn't put the anaesthesia through either arm, again because I hadn't had full node clearance - it was only when I said that my lymphoedema nurse would disagree with him that he accepted that he would have to do it in my foot, which is very painful.