It’s Good to Talk… sometimes

Nine times out of ten I don’t understand whats happening to me, why everything is so difficult and painful and taking so long, and so it becomes very difficult to explain to others what I’m going through. Some just don’t understand or know what to say and unfortunately their reactions can often do more harm than good.

Here’s just a selection of the surprising reactions I’ve been on the receiving end. It’s been an interesting few months!

  • You didn’t actually have cancer did you!
  • Don’t be a closed book all your life
  • You have the best kind of cancer
  • I don’t know what you’re so upset about, you’re not dead
  • How are you going to feel when you get cancer again? (surprisingly this comment was from a cancer helpline worker)
  • What have you been doing with all your time off?
  • I heard you did a 30 mile run after the surgery
  • I’m really upset and you’re not helping me
  • Do you have any positive thoughts?
  • Cheer up
  • Don’t sit at home and mope (this is what they assumed I was doing. They couldn’t be more wrong)
  • Wear something sparkly, you’ll feel better
  • The cancer’s gone so everything is ok now isn’t it
  • We’ve made a mistake and removed a healthy part of your body (a heartbreaking comment from my Consultant post surgery)
  • The good news is your cancer is classified as a critical illness (from my Consultant, again post surgery)

And of course… “You can beat this”… followed by… “You’ve beaten it”. The problem with both of these statements is that it assumes that we are capable of curing ourselves of cancer, which we’re not. If we were, no one would ever die of cancer and those that did would be blamed for not doing enough.


The New You

55,000 women and 400 men are diagnosed with breast cancer every year in the UK. Helping with the waking reality of that every day is where the charity Breast Cancer Care comes in – providing specialist support and vital information to cancer patients, families and friends when it’s most needed.

Whether you’ve had a lumpectomy or a mascectomy, you will have a visual reminder of what you have been through. Getting to know the new you and accepting your new life is not an easy road to walk.

Breast Cancer Care are launching a campaign to highlight their role in supporting cancer sufferers during and after treatment. The ads feature pictures of women with their mastectomy scars, aiming to show that it is possible to find confidence after breast cancer.

Breast Cancer Care’s head of communications and marketing, Jane Heath, says: “The images are meant to be powerful and striking rather than shocking. This campaign is about helping people find confidence after a breast cancer diagnosis and so we felt it was important to show women feeling comfortable with their bodies and with themselves and sharing a little of their experience. And yes, to show that we’re here to provide support as a specialist breast cancer support charity.”

During yesterdays Moving Forward Workshop run by Breast Cancer Care, we were encouraged to write a letter of support to ourselves that would then be posted back to us in a month or so. The thought of writing such a letter was quite daunting at first so I decided not to over think it, to just write whatever came in to my head. Once my pen hit the page the words just started to flow.

There was so much I wanted to say about how well I thought I had done, how I had already achieved a huge goal by setting up this blog site and how it had already started to help others. I wanted to encourage myself to keep going, to let go of the past and to embrace the new. To keep in touch with the new friends I had made and to remember to make time for myself. To not beat myself up about where I should be or how I should be feeling but to just accept life and enjoy it.

I sealed my letter and handed in.

Source: Marketing Week and Breast Cancer Care

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!

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

The Science of Happiness – Gratitude

Here’s something worth trying…

Close your eyes and think of someone really influential in your life right now, someone who has done something amazing or important for you. Then write down as much as you can about why this person is so important to you. When you’ve finished call them and read what you’ve written.

If we start every day by thinking about what is is we are grateful for in our lives, then write those things down in a “gratitude” diary, by the end of the week we will have created quite a list. Imagine what that list would look like at the end of a month, a year, five years! It’s a great start to the day but also makes great reading particularly when we are feeling low, and even then, I’m pretty sure we can all think of something or someone we are glad or grateful to have in our life.

Emotional Support

cancer-supportThe medical team that advised me on my course of cancer treatment, and saw me through the surgery, freely admitted that they were there to deal with the physical side of things, they couldn’t help me with the emotional side of it all. For that they recommended I go along to a local cancer support center.

Initially I really didn’t like the thought of walking in to a room full of strangers and talking about how I was feeling. That was the last thing I wanted to do. It wasn’t until after one rather distressing doctor’s appointment that I found myself knocking on their door, walking in, bursting in to tears and saying “I think they’ve broken me, mentally.”

In a nutshell, it’s for that reason that the support centers are there. Run by volunteers who have had experience of cancer or who have cared, or know someone who has had cancer, they can totally relate to how you are feeling. To me, they are the 4th emergency service. Without their support, care and understanding my world would have been a very bleak place indeed.

They are a wealth of information about everything to do with cancer and the effects the treatment has on every aspect of your life, offering advice and complementary therapies to help you through it all. You don’t need to make an appointment either, you simply turn up. To me, it’s quite simply, sanctuary.

If you are coming to terms with your diagnosis I would definitely encourage you to seek out a cancer support center near you. The work they do is absolutely priceless and I for one don’t think I can ever thank them enough for everything they have done for me and still continue to do.

Cancer Support Centers I’ve come across are:
Wessex Cancer Trust
The Haven

Free NHS Prescriptions

nhsHere’s a great piece of news… prescription charges for cancer patients were abolished in 2009 and exemption certificates will be issued to those applicants, who in their doctor’s judgement are receiving treatment for:

  • cancer
  • the effects of cancer or
  • the effects of current or previous cancer treatment

Exemption certificates for cancer patients will last for 5 years and can be used to their end date even if the patient’s cancer treatment finishes during that period. At the end of 5 years a new application may be made if the patient still meets any of the listed conditions above.

The new medical exemption is not intended for patients who have been treated and are now apparently clear of cancer where no further treatment is planned. In these cases, treatment does not include routine follow ups with planned discharge later.

Guidance about the extension of the list of medical conditions has been issued to doctors. It includes guidance on who the new medical exemption is intended to cover. Guidance issued to GPs and oncology departments defining cancer patients.

Source: NHS Prescription Costs