Lymphoedema Awareness Week 2018 Day 3 ~ Jackie

The Learning Curve Of Lymphoedema

LYMPHOEDEMA AWARENESS WEEK 4TH-10TH MARCH 2018 ~ JACKIE

After the diagnosis, after the surgery, after the chemo and the radiation. After all this – comes the pain of lymphoedema.

I was aware but not informed about the possibility of lymphoedema after breast cancer treatment. It floated at the back of my mind, a blurred concern, barely rising above the sharp focus of necessarily aggressive treatments.

I was so relieved following mastectomy and chemotherapy, to have avoided it. Like many others, a post surgical seroma was drained, and the gross side effects of chemotherapy were slowly settling down. Until radiotherapy. I started radiotherapy in positive mood. I knew it was more bearable than other treatments and came prepared. With the right lotions, healthy colourful diet, deep breathing, self-massage and buoyed up by the light at the end of the active treatment tunnel. Despite logistical problems of the delivery of radiotherapy - delays, cancellations, linear machine breakdowns and lengthy travel, I completed radiotherapy. Emerging into the first favourable mood of hope after diagnosis, for a return to normality.

And then lymphoedema struck. Approximately 1 year following diagnosis. Puffing up like a mushroom cloud around my trunk and chest. Initially confused with a bit of temporary post radiation swelling. But it wasn’t temporary. It was permanent. And forever. Perpetual and persistent. And pain radiated around it. I was thankfully referred by oncology to a fantastic lymphoedema service. Two exceptional ladies, soothed, massaged and supported me through the initial diagnosis. I was astonished at the amount of time and energy they spent on trying to reduce the alarming accumulation of fluid. Unfortunately but understandably, this service is limited – but I still have lymph reviews. Which I am so grateful for. Also so grateful for a tiny handful of whittled down support groups on facebook - especially BRiC. I started a breast cancer related lymphoedema support group (https://www.facebook.com/groups/BCLymphoedemasupport/). There were not many specific ones and I felt the need to be in a community that would nurture each other and explore the latest research.

I have been considering some of the issues which may increase the risk of lymphoedema. I was overweight during treatment. Quite an ‘inflammatory’ person – mild allergies and sensitivities. But the glaring irony is the treatment cause itself. Although radiation was the tipping point – I also had a mastectomy with 11 lymph nodes taken. Incidence of lymphoedema has been shown to increase in proportion to the number of lymph nodes removed. Managing a lifelong condition after ‘successful’ treatment seems a deliberately contrary and upsetting place to be. But I am hopeful for new developments in the pipeline – laser therapy, re-routing the lymphatic system to the venous system. And others. Until then It’s massage, maintenance and mindfulness!

#ResilienceInLymphoedema
#LAW2018
#LymphoedemaAwareness
#thebriccentre

Lymphoedema Awareness Week 2018 Day 2 ~ Jennie

"I've had another nine doses of cellulitis....."

LYMPHOEDEMA AWARENESS WEEK ~ 4TH - 10TH MARCH 2018 ~ JENNIE

Writing is not a strength, and what's more I bore myself when I talk about any of my medical stuff and so I apologise in advance.

I was diagnosed with stage 3 grade 3 breast cancer in March 2014. I had 3 operations to eventually remove a 10cm tumour, lymph nodes and left breast. I had chemotherapy, with an episode of sepsis, and radiotherapy ending December that year.

I began January 2015 feeling as though I'd been through hell. I had ongoing tests as the oncologist was concerned about a small lump identified on my liver, but hoped I could try and get back to some kind of normality. I can remember the sweats, breathlessness and lethargy as I attempted to push what was left of my poisoned body too fast, too soon.

Although I did the exercises and massage recommended by the breast team, the first sign of lymphoedema came just before my second operation when the hospital had to cut off my wedding and engagement rings because my hand was swelling. Then in January 2015, after chopping wood my hand and arm swelled up. I began wearing a sleeve shortly after my first dose of cellulitis came in July 2015 - this was after wearing a wet suit and getting in the sea the first time since diagnosis - the lymphoedema nurses thought it might have been caused by a jelly fish sting!

I've had another nine doses of cellulitis since then. Each time I've needed to take at least 2 weeks of antibiotics to stop the infection spreading. To say I'm sick of taking the tablets, and trying to take care of my arm would be an understatement.

Unfortunately the lymphatic system in my arm has been damaged too much by cancer treatment and isn't a good enough quality for them to perform the pilot operation to link it up with blood vessels.

Things that help me include - Sue (from a local cancer charity) who gives me some amazing lymph drainage massage. She has also on occasion applied kinesiology tape and bandaged me up. Also, the lymphoedema nurses at the hospital who gave me 6 sessions using the lymphosist machine which took away some of the swelling.

I am still trying to accept the long term nature of this condition. I find it a constant reminder of having had cancer. I probably feel I manage better in the winter than summer. In the warmer months, wearing less clothing, my arm is more exposed, which often leads to being repeatedly asked what I've done to my arm. So far I've found my son's suggestion as to a response for the reason I wear a sleeve the best - "a shark bite".

#ResilienceInLymphoedema
#LAW2018
#LymphoedemaAwareness
#thebriccentre

Lymphoedema Awareness Week 2018 Day 2 ~ Ruth

"It’s part of who I am." 

LYMPHOEDEMA AWARENESS WEEK 4TH ~ 10TH MARCH ~ RUTH

I developed lymphoedema in 2013, which was actually 9 years after my first diagnosis with breast cancer, for which I had a mastectomy and axillary node clearance.  

It first presented as mild swelling but it quite suddenly became a lot worse about 15 months later for no apparent reason except that I had the flu. Up until then I’d managed with a sleeve ‘as and when’ I needed it, provided by the specialist Lymphoedema Service, but afterwards I needed one with a higher level of support and a hand piece. At this point I was very upset, I hated wearing the equipment, I was in pain, felt unattractive and miserable. I also felt very angry as I really thought I’d ‘got away with it’. I coped (and still do) by using black rather than beige sleeves, creaming religiously every night with a nice smelling body cream and basically taking very good care of my arm.  Since then, it has gradually improved and just over 3 years later. 

While I still need the sleeve the hand-piece is no longer needed and the swelling has reduced a little. I use a car with an arm rest and this has also helped a lot. I’ve come to terms with it now; although I don’t like it, it’s part of who I am.  

#ResilienceInLymphoedema 
#LAW2018  
#LymphoedemaAwareness  
#thebriccentre

Lymphoedema Awareness Week 2018 Day 1 Introduction

LYMPHOEDEMA AWARENESS WEEK ~ 4TH-10TH MARCH 2018

To mark Lymphoedema Awareness Week 2018, we will be sharing some of the experiences of women living with lymphoedema, including how we were diagnosed, how we cope and how we have learned to live with our lymphoedema - with resilience.

According to CRUK, about 1 out of 5 people (20%) with breast cancer go on to develop lymphoedema,: http://www.cancerresearchuk.org/…/lymphoedema-after-breast-… This is because one function of the lymphatic system is to drain excess fluid from tissues and if the lymphatic system is disrupted or damaged as a result of surgery and/or radiotherapy, it can lose this ability and the excess fluid will cause the tissue to swell.

Swelling is a natural part of the healing process following surgery and usually settles down as we recover. lymphoedema can develop soon after surgery or radiotherapy. But, as you'll hear from the women who will be sharing their stories over the next week, it can also be triggered many years after treatment. It is important that people understand the risk of developing lymphoedema is life-long where the lymph nodes have been removed or damaged.

Lymphoedema, pronounced lim-fo-dee-ma, is a chronic (long-term) condition that causes swelling and leads to pain and a loss of mobility; it can also feel disfiguring. It usually affects the arms or legs, and sometimes the hand and fingers, although, following breast cancer it can affect the breast and trunk.

There is no cure for lymphoedema, but symptoms can be controlled using a combination of different techniques, usually massage and compression garments and also taping. There are some exciting surgical developments, but these are not suitable for everyone. There are also things we are advised which can help prevent the condition getting worse, such as specially designed exercises, good skin care to avoid infection and having a healthy diet and lifestyle.

#ResilienceInLymphoedema
#LAW2018
#LymphoedemaAwareness 
#thebriccentre

Weekly Discussion Summary ~ Radiotherapy - Practical tips and more

This week we shared hints and tips to help with radiotherapy treatment. Radiotherapy is used to kill and control malignant cancer cells and is often given after surgery and/or chemotherapy in the treatment of breast cancer. It is also used in treating secondary breast cancer that has spread to other parts of the body. Not all breast cancer patients are given radiotherapy, but for those who do need it, we hope our summary may be useful.

We don’t want to worry women who are coming up to radiotherapy treatment, but for most of our group members, knowing as much as they can about what’s to come is helpful in managing anxiety. Preparing and being aware of what may happen is helpful, although we would like to stress that for many, radiotherapy is a simple and effective treatment that causes very few problems.

Although occasionally we hear of radiotherapy teams not recommending the use of a moisturiser on the affected area, most do suggest that regular moisturising is a great help. Pure perfume free creams and lotions are best, and 100% aloe vera gel is a popular choice. Many women are told not to wear deodorants or perfumes during treatment.

The most gruelling part of this treatment may be the daily treks to the hospital as radiotherapy is most commonly delivered as a 5 days a week treatment for a number of weeks. For women who don’t live near a hospital this is a very tiring time, with long drives or journeys by public transport adding to the fatigue that is commonly induced by the treatment itself. Machines appear to break down regularly causing long waiting times and many hospitals make appointments day by day so that planning ahead is difficult.

Keeping well hydrated during treatment is recommended, and keeping the arms and shoulders moving with gentle exercise is encouraged as the patient has to lie still in the same position every day so that the radiation can be accurately targeted. The set-up appointment is often quite lengthy, while the machine settings are made. Women will often have a number of tiny dot tattoos to assist with lining up the machine. Some women have to hold their breath while the radiation is applied to avoid damage to the heart and lungs, and many report that this is very difficult. A few practice runs are usually offered and for those daunted at the thought of this, it is do-able though a challenge.

Some women experience very little skin irritation from this treatment, others will find that their skin remains darker for some time afterwards. Sometimes the burning effect can be quite severe and can last for a week or two after treatment ends. This is often the time that tiredness kicks in. Often radiotherapy may be the last stage in active treatment, and many women reported feeling flat and exhausted for a while. Good advice is not to book a holiday or strenuous activity directly after the end of treatment - a quiet recovery period is preferable. On the other hand, many women reported sailing through radiotherapy, with many continuing to work and take part in their regular daily activities.

Some women reported being taken by surprise at how they felt during the two or three weeks after treatment ended. It seems that the medical teams are not good at warning us about this. Several say that had they known, they would have planned more rest, used more cream, drank more water, and so on.

Post treatment problems may include costochondritis, which is inflammation of the ribs, sore itchy skin, tightness and stabbing pain. The radiotherapy penetrates deep inside the body so there is a huge amount of invisible healing going on inside the body as well as that which is visible on the outside.

Radiotherapy for secondary breast cancer brings its own set of problems as areas other than the breast, underarm and neck are targeted. Just a couple of examples: treatment to the throat can cause issues with eating; radiotherapy to the brain can cause hair loss and often a mask has to be worn which may be uncomfortable. Other side effects may include muscle weakness and diarrhoea, and memory impairment. It is often delivered as part of a complex treatment plan which will be individually tailored. For these women, treatment is ongoing for life.

The emotional impact of radiotherapy can be difficult, as we tend to hear the phrase ‘radiotherapy is a doddle compared to chemo’ bandied around a lot. Some women found lying on the machine table undignified, particularly with male radiographers and some insensitive female ones too. Most reported having kind and considerate nurses though, who were understanding and supportive.

Many women spoke about building in little treats to get them through the treatment, coffee and cake on the way home, a chat with a friend, an afternoon nap, a movie. Behaving towards ourselves with kindness always makes a tough time a little easier.

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group, please message via our facebook page 
https://www.facebook.com/resilienceinbreastcancer

Weekly Discussion Summary ~ Talking to Children about Breast Cancer

This week we shared the different ways in which we talk to our children about our breast cancer.

Whether our child is a toddler, young, in their teens or grown-up, we reflected that telling our child or children we had breast cancer was perhaps the hardest thing we have ever had to do.

There is guidance a-plenty, both scientific and anecdotal, but at the end of the day each of us makes our own agonising choices about how much - or how little - to tell our children, and how much - or little - to involve them in our treatment.

It was clear that deciding what, when and how to talk to our beloved children about breast cancer felt like an enormous task. Whatever our diagnosis, we had in common our desire to try to do the best for our children. Above all, we want to protect them from the fear and uncertainty that cancer has ushered into their lives. If we can, we want to retain as much normality as possible within family life.

Mothers with secondary breast cancer face the added challenge of how much to share about the nature of secondary breast cancer, which can be treated and managed, sometimes for many years, but which can’t be cured and which generally involves ongoing treatment throughout their lifetime. All while dealing with shock, fear and in many instances anticipatory loss. Making memories and sharing as much joyful time as possible becomes of paramount importance.

What we decide to tell our children depends on their age, personality as well as our own values, beliefs and family dynamics. Many women choose to tell their children as much as possible, believing that complete openness and honesty is the healthiest way to help them cope. Some had actively involved their children in their treatment, taking them to appointments to talk to the oncologist and to be a part of treatment.

Some of us talked about the devastating impact of our own experiences as children, when illness and death was less talked about, and how we had lost our parents without any adults explaining what was happening. These early experiences shaped the way we approached telling our own children, bringing back painful memories as well as the chance to correct the past.

We learned that we can over or underestimate our children and we may be surprised at how they react. Some of us shared that our children had dealt with our diagnosis well, becoming involved in treatment. Others shared alarm and distress at witnessing their children's reactions - including distress, withdrawal or angry outbursts - as they try to grapple with their feelings and cope with the reality of a mother who has cancer.

Some of us decided that a young child doesn’t need to know, or, we offer a simple explanation which we can come back to as our child grows and develops. Older children can choose to do their own research which poses the dilemma of how much to tell them.

Younger children can be remarkably resilient, but many may find themselves bewildered and unable to articulate their feelings when mummy is poorly and can’t do all the things she used to do. For some, a mum who loses her hair may be frightening; others appear to take it in their stride.

Older children may be better at hiding their fears and this can be worrying for us, particularly if a child refuses to talk about it once they’ve learned about their mother’s diagnosis. Hair loss can be embarrassing and the reactions of peers can be an added pressure.

If we can, crying together can be a release, with many sharing that this had helped their children to dust themselves down and carry on. Many children do cope well and adult children can become a rock of support, but others pull away and withdraw. Many mothers reported trying to keep the worst of their pain away from their children once they’ve told them for fear of upsetting them or making them anxious.

Some of us thought our children appeared to be coping well on the surface, perhaps keeping their feelings hidden. Others might express their feelings through challenging behaviour - either at home, or perhaps at school. Effects can be long-lasting, or ebb and flow, triggered by transitions, news items or bereavement. Many schools, we heard, offer support, some in the form of counselling, and some women found it helpful to let teachers know of their diagnosis.

There is a selection of age appropriate literature available to help us and many women used these materials to supplement their conversations. These publications also help us to communicate that we are not alone, that breast cancer is happening to lots of women. Humour can be helpful at times too as can joining in fundraising. Asking close family friends, aunts and uncles to keep a special eye out for children and to be confidantes if they needed a shoulder or a listening ear can also be supportive.

Guilt and depression are common emotions. We want to be careful not to pass this on to our children. We feel it is somehow our fault that we got cancer and we are to blame for causing anxiety in our children and potentially leaving them too soon.

It can feel unbearable to contemplate our child's future without our presence and care. Some had wondered whether it would be better if cancer took us quickly, while our children are too young for it to register and without a long drawn out period of illness. But this, we realised, was the voice of our depression. We all want to see our children grow up, to guide, support and love them. We all want to our children achieve major milestones.

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group, please contact us via the facebook page https://www.facebook.com/resilienceinbreastcancer/

Weekly Discussion Summary ~ Practical Information and Support

Our weekly discussion focused on the different ways we cope following our diagnosis with primary and secondary breast cancer, as well as recurrence, and how we get practical information and emotional support.

They say that knowledge is power.

This, we found, can be context dependent, although many of us had now reached a point where mostly, we preferred to know, so as to prepare and protect ourselves, irrespective of the amount of control we have over the outcome.

Not knowing can be helpful too though. Some of us, especially at the point of our diagnosis with primary breast cancer, described feeling shocked and numb, and having chosen (or not felt able to make 'a choice') to rely totally on the knowledge and wisdom of our treating teams. It's only as these intense feelings subside, that we begin to open our eyes fully and see this new country we find ourselves in.

Women with secondary breast cancer described the empowerment that came from being able to reach out using social media to get instant information from other women, based on personal experience of treatment possibilities when they had been diagnosed with progression. This was especially important given the complexity of treatment options and how finely balanced decisions can be, which meant that they themselves can have an important contribution to decision-making. Likewise, finding out about side-effects that aren't always mentioned by clinicians. Those of us who had experience of recurrence also found that in the midst of the fear and isolation we feel, peer support, the knowledge that we are not alone and that others have also walked this path offers hope in the darkness.

Naz explained, from a neurocognitive perspective, how emotional and social support and networks are so important - talking and writing, unconditionally and freely, helps us immensely because it frees up and boosts working memory capacity. Naz told us that working memory helps us regulate and manipulate information which then gets stored by our brains. It is what she calls the supervisory system in the brain: it helps us practice what needs attending to, and what needs ignoring. When we exercise working memory through writing, or talking, or simply listening to other people’s similar problems, we free up capacity in our brains that would otherwise be filled up with worry, anxiety, apprehension and fear. We become more emotionally stable and feel a bit relieved (like when we cry for example). Different stages of trauma require different practices of resilience. To allow ourselves to be ‘weak’, to cry, to vent, to confide, is actually an important cognitive and emotional step towards recovery.

Doing the little things that can strengthen our physical well-being are important - going to a group, writing, talking, walking, mindfulness - all help us to cope with the emotional and psychological demands of the situation we find ourselves in. Though the impact of the knowledge is complex, it can be scary at times. Not knowing can also be helpful at times, but it’s a delicate balance, and requires us to be able to be flexible and adapt.

If you are a woman with a breast cancer diagnosis living in the UK and you would like to join our private members group, please message us via our facebook page at https://www.facebook.com/resilienceinbreastcancer/