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!

Simple Lymphatic Drainage

If like me, you’ve had a go at SLD (simple lymphatic drainage) but are not 100% sure if where you’re massaging is the right place, this illustration may help.

The lymph nodes are the yellow blobs and those are the areas we need to locate in our own bodies in order to perform SLD. They can be found just below the surface of the skin, so just a light touch is needed to perform the massage and to get the lymph moving.

lymph-nodes

Also see my post about lymphatic drainage for an SLD tutorial for the arm.

For further information out more about how to perform SLD visit the Macmillan website.

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
Macmillan

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

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.

Sleep on your Left Side

This is a great way to support our lymph system for 8 hours while we sleep!

Since leaving hospital sleeping hasn’t been easy. Trying to find a comfortable position without putting any weight on my scars has been difficult.

I have quickly learnt that by surrounding my upper body with pillows I can support my arm whichever way I sleep. So, with a pillow under my head, a pillow to my left and one to the right – creating a U shape, I can be comfortable lying down in bed – the one place I truly want to be able to rest pain free!

With my affected arm resting on one pillow (and slightly raised) I can drift off knowing that if I move around in the night, I also have the pillow on the other side to roll on to, which will still keep my arm elevated. This means that I don’t put any strain or pressure on my affected arm or wounds.

This morning I found that there are actually huge benefits to be had if we predominately sleep on our left side. Pre-op, my right side was the side of choice but because that is the side my cancer was on, I have had to learn to sleep with my body weight on my left. So you can imagine how pleased I was that I was already, without knowing it, helping my lymphatic system every time I went to bed. Cool.

Interestingly, the left side of the body is the dominant lymphatic side. The majority of the body’s lymph fluid drains into the thoracic duct, located on the left side. Along the way, lymph fluid carrying proteins, glucose and other metabolites and waste products is purified by lymph nodes and is then drained into the left side of the heart.

Source: Life Spa

Argan Oil

argan oilHere’s one for my shopping list today: Argan Oil. It was my breast care nurse who first mentioned it to me as something that could help with the healing of scar tissue.

The benefits of Argan Oil:

The active substances called triterpenoids that occur in Argan Oil offer amazing skin protection benefits. These include tissue healing (scars), anti-inflammatory, sun-protective and disinfectant properties.

The oil contains 80% unsaturated fatty acids and is more resistant to oxidation than olive oil. Argan oil also contains 0.8% unsaponifiables (a large group of compounds also known as plant sterols or sterolins). Sterolins improve skin metabolism, reduce inflammation and promote excellent moisture retention.

It is helpful for lowering cholesterol levels, stimulating circulation and strengthening the body`s natural immunity.

Source: Natural News

How to use Argan Oil on the body?

You can use Argan oil alone or in combination with your favorite body lotion by adding a few drops to each application.

  • After a bath or a shower, rub a 1-2 drops in your palms to warm the oil up
  • Apply to damp, still moist skin
  • Apply Argan oil to entire body including feet and hands
  • Gently massage until absorbed
  • Enjoy your smooth soft skin!

Source: Argana Vita