Sweet Tea & Empathy Please

Sympathy is something most people can express but empathy works better for me. What’s the difference? Well, when someone sympathises with you or your situation they tend to show pity. They can commiserate and show an understanding for what you are going through but may say things such as “Oh no. I can imagine how awful that is for you but hey, at least you’re not dead!”, which doesn’t help at all.

When someone empathises however, they connect with you because they understand and can share your feelings, maybe because they too have experience of it or even if they don’t, they might be able to say something like “OMG. I don’t know what to say. I’m just so glad you told me.”

Looking back, the people around me who helped me the most emotionally, were those who had experience of a devastating, life changing situation.

Through the workshops I’ve attended over the last few months I’ve made some new and very dear friends. Connecting with people and sharing experiences is a wonderful way of getting through a difficult time and has allowed me to show support for others on the same or very similar journey.

You don’t have to have been through a cancer diagnosis to show empathy to a cancer patient, you just need to be able to make a connection to how they are feeling. This video clip sums it up perfectly.

On the other hand, here’s what not to say…

Workshops Have To Work

I realised this week just how lucky I have been over the last few months. The workshops and support groups I’ve been a part of and the people I have been fortunate enough to meet through them have helped me in ways I never thought imaginable, but things could have worked out very differently indeed.

We all have very different cancer journeys and I realise that workshops can either work or not depending on what they are about, when they come in to your life, who is running them, who else is attendance and how you are feeling at that particular time, but I also know that if the workshop I went to this week had been my first experience of one, I would have found the journey unbearably hard.

Im not going to mention which group it was, that wouldn’t be fair because whats right for one isn’t necessarily right for another. So I wont push my opinions on that one on you. Suffice to say that I knew within minutes of being there this particular course wasn’t for me. I gave it a good 3 hours, although to be fair I would have walked out a lot sooner if I’d had the opportunity.

Here is where in my opinion it went wrong…

  1. The two organisers both wore top to toe shades of grey, didn’t smile much or make us feel warmly welcome.
  2. The chairs were incredibly uncomfortable, so much so half the group asked for a different one, me included.
  3. The two organisers read mainly from work sheets like they’d never done it before.
  4. The rest of the session was simply watching DVDs on an overhead projector with very poor sound quality.
  5. The healthy food demonstration (on DVD) used ingredients I’d never heard of and were really complicated to make.
  6. The group weren’t engaged.
  7. It was run like a classroom and we were talked to as if we were children.

And so the list goes on.

If nothing else cancer teaches you that time is precious and that how you spend it is important. Quite simply, if something’s not working for you, leave it and move on. Life’s too short.

My Face The Fear

worryI was recently asked, as a part of group workshop, to think of a side of my personality right now that I don’t like and to then decorate a mask to represent that character trait. Initially thrilled at the thought of doing some ‘Art Therapy’ I quickly became very apprehensive.

It didn’t take long for me to identify the part I dislike the most though. Its quite simply all the worry, fear and anxiety that I carry around with me and that has taken a hold of my life for the last 4 months. I had no idea how that would transpire on a mask and then it dawned on me – it was manifesting itself in my head, through my thoughts and was working its way down through the rest of my body.

I grabbed some wrapping paper, tore it up and started to glue it around the forehead, sprinkling over some sequins to represent the hundreds of thoughts I had day and night that were uncontrollable. All the “what ifs” and “whys” that went round and round, all the hundreds of lists of things I needed to try and remember about what I should and shouldn’t be doing, how my life was, and what it is now, why this had happened and what was going to happen to me, to my life and how that would affect the people I love around me. Millions upon millions of thoughts that were mounting up and weighing me down.

The black areas below my eyes then became the weight that worry was having, causing me sleepless nights and huge amounts of pain and anxiety.

Tearing up pink tissue paper I covered the rest of the face. Keeping the seems open and tattered to show the effect this was having on the rest of my body and how it was tearing me apart.

The shiny, smiley sticker faces above the eyes are for all the times people ask me how I am. “Yeah, everything’s fine thanks. How are you?” had become the standard response but it was just too far from the truth for me to feel comfortable to share. The smiles are quite simply the faces I wear to make everyone else feel better.

The whole exercise was very telling and explaining it all to the rest of the group was incredibly emotional. It made me realise though that I am only hurting myself by worrying and letting my fear rule my life.

This was my face, the fear.

A Rocky Road But Where’s The Chocolate!?

It’s hard to understand why when the surgery and treatment is over we’re not celebrating, moving on and simply getting on with our lives.

I certainly didn’t understand it but have come to realise, as many other cancer patients do, that the cancer journey has only just begun and surgery was just the start of it.

Up until that point I was in survival mode. I did what I needed to do to get rid of the disease but when the treatment stopped, and I had time to reflect on what had happened, that’s when it hit me, like an express train coming down the track at full speed with all its headlights on and sirens sounding.

Yesterday was the last day of my Moving Forward Workshop with Breast Cancer Care. We talked about the cancer journey and what it looks like. The graph below, provided by LYLAC (Live Your Life After Cancer) sums it up perfectly.

Cancer Journey

The horizontal line across the middle of the graph with the gold stars is time. Moving from left to right from the moment we get the diagnosis in to the future. How long in terms of months/years that represents is different for all of us.

The top half of the graph illustrates what happens to us emotionally and physically during that period. The bottom half shows what is happening to our lives, the range of emotions we experience and the questions we may be asking ourselves.

The Red Bit
From the moment we are diagnosed to the day we complete our treatment we are in survival mode – focused on what needs to be done, our bodies take the biggest blow. This is when we are under the care of our medical teams and when we may receive most support from friends and family.

The Green Bit
When we leave hospital and the treatment has ended we hit rock bottom. Our bodies are slowly recovering from the fallout but emotionally we are running out of steam. Family and friends may think we are done with cancer and think that we’re fine, but we’re not. Life has changed. As much as we desperately want our old lives back we slowly come to realise that the old life is simply just that, an old way of doing things. We need to get to know the new us.

For me the dotted green line on this graph would have many more highs and lows. I have had the most incredible lows followed by highs of days where it doesn’t feel like anything has really happened. Then whoosh! Something comes out of nowhere, for no reason and smacks me down again. Its almost as if someone is shouting: Hey! You! Don’t forget whats just happened. Don’t you dare get comfortable. Its not over yet Sister. This is my rocky road but it is becoming more even as time goes on. 

When my treatment was over I felt very lost and alone. The support of the medical team had gone and I was falling apart. I didn’t know where to turn or who to talk to. My life saver was my local Wessex Cancer Trust Centre. Its one of many charity centres set up to help cancer patients through those difficult times.

My other saving grace was going to workshops like the Moving Forward one set up by Breast Cancer Care. Meeting women who are on the same journey helps enormously and being able to have expert help and advice on how to make sense of it all is absolutely priceless. Although the course has come to an end now we have decided to stay in touch. There is even talk of setting up a Nordic Walking group, which would be fantastic!

What Is A Balanced Diet?

Today, during Breast Cancer Care’s – Moving Forward Workshop class, I was introduced to what a healthy plate of food actually looks like. I thought the illustration used was just brilliant, so simple to understand and such a great tool for determining how much of what I should be eating. I already knew for example that eating lots of fruit and veg was a huge plus, that white meat and fish were good, but had also heard that I should really cut down on dairy, and of course sugar is always seen as a bit of a treat, but really didn’t know how much of anything was enough or too much.

eatwellplate

This diagram illustrates I should ideally aim for:

  • 33% Carbs
    e.g. bread, rice, pasta, potatoes and other starchy foods
  • 33% Fruit & Vegetables
  • 15% Milk & Dairy
  • 12% Protein
    e.g. meat, fish, eggs, beans and other non-dairy sources of protein
  • 7% Sugar
    e.g. foods and drinks high in fat and/or sugar

Life After Cancer Web Chat Transcript

MacmillanMacmillan have just released the transcript of their Life After Cancer Web Chat which took place on the 10th September. Whether you were able to join the chat on the day or not you can now see all the questions and answers online. I was there on the day and was one of the people asking questions about Lymphoedema.


Hilary Weaver, a specialist nurse from the Macmillan Support Line, answered questions on the physical and emotional after-effects of cancer.

In terms of living with the risk of lymphoedema, they say that you know when you have done too much exercise or put too much strain on your arm. The problem with that is that it’s then too late – I’ve done too much and the damage is done. How can I possibly know when enough is enough without doing any harm? What are the warning signs?

Hilary: That’s a good question. The risk of lymphoedema is greater if you suddenly do an unusual amount of activity or lifting. The key is to build up slowly and consistently so that your arm has lots of time to adapt. It is possible to do vigorous exercise and weights without developing any problems but you need to work up to that very gradually and make it your norm! Don’t do too much too fast. You can find more information about coping with lymphoedema on the Macmillan website.

But when you have pain in your arm before you start, how do you know when to stop. It’s been 13 weeks since the surgery and I don’t know what the difference is between healing pain and lymphoedema pain.

Hilary: Your surgery was quite recent and it’s not unusual to still be healing up. Lymphoedema would be uncommon at this stage in your healing. Perhaps sticking to the post op exercises you’ve been given at this stage would be sensible. You could also talk to your specialist for more advice or a physiotherapist referral?

Does manual lymphatic drainage (MLD) help reduce the risk of lymphoedema?

We don’t know for sure that manual lymphatic drainage prevents lymphoedema. The research about this just isn’t very clear at the moment. MLD is more often used with other techniques to manage lymphoedema. You can read more about preventing lymphoedema and treating lymphoedema on our website.


You can read the full article here: Life After Cancer Web Chat

Life After Cancer Web Chat

macmillan-questionsNext Tuesday (10th Sept) between 12-1 pm Macmillan are running a live web chat in their online community chat room to talk about life after cancer.

Their *experts will be answering questions on living with the physical and emotional consequences of cancer, as well as on returning to work.

If you can’t make the chat, you can post your question on Macmillan’s facebook page and they will ask the question for you. All the questions and answers will be published after the chat.

*Heidi Lindenstock, a specialist nurse from the Macmillan Support Line, and Richard Hunt, who is working in vocational rehabilitation will be there to answer your questions on the physical and emotional consequences of cancer, while Richard will be covering getting back to work.