Take The Ice Bucket Challenge!? – No Thanks

You cant fail to notice the world’s gone nuts over the ice bucket challenge. People are pouring ice cold water over themselves in a bid to raise awareness for charitable causes such as ALS and Macmillan to name but two. The effect however is becoming somewhat diluted the longer the craze goes on. It seems to me that people are forgetting or neglecting the real reason the challenge came about – to raise awareness and funds for these good causes. That aside there is also the issue over whether people should be wasting water when there are still countries with chronic clean water shortages.

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Whatever your view, I for one won’t be picking up the gauntlet. Why? Well because extreme temperatures pose a lymphoedema risk. Cancer Research UK state…

Avoid extremes of temperature, both hot and cold, including saunas, steam rooms and very hot baths or showers

I wouldn’t recommend trying this by any means, but this ice bucket challenge did make me giggle…

And for those who really want to do something worthwhile…

Mosquito Repellents

This week I found not only my PJs but also my pillow had become home to mosquitoes. Not the nicest thing to find when your head hits the pillow it has to be said.

Being someone mosquitoes love to snack on and knowing that bites and stings are a lymphoedema risk, it seems it is that time of year again when I need to find ways to keep the little buggers away from me.

citronella-candleHere a few things I know work and a few new ones that are worth a try:

  1. On my affected arm swap the E45 and Argan oil combo to Avon – Skin so Soft, which contains citronella.
  2. Get out the citronella tealights and start using those instead of my regular scented candles.
  3. Get some more lavender, rosemary, lemon grass and marigolds planted up in the garden.
  4. When opening windows in my bedroom remember to use the fly screens too.
  5. Cook with garlic more.
  6. Get out my mosquito swatter just in case.
  7. Make sure there’s no standing water inside or out.
  8. Cook with soy bean oil.
  9. Cut down or cut out perfumed products, especially when going outside.
  10. Wear long sleeved, light coloured tops with a tight weave.
  11. Avoid excessive exercise particularly at dawn and dusk when mosquitoes are out. Sweat, carbon dioxide and warmer body temperatures are also very attractive to them.

(Source: Amelia Island Mosquito Control)

Lymphoedema Risk Factors

The combination of two or more of the following conditions increases the risk of developing Lymphoedema after breast cancer surgery:

  • cancer and or removal of lymph nodes
  • radiation treatment
  • venous disease (bulging veins or removal of them)
  • surgery
  • infection
  • obesity
  • immobility
  • air travel
  • mosquito bite

(Source: Lymphatic Yoga Expert)

I refused radiotherapy on this basis, a slightly controversial decision but one I believe was right for me given the grade of my cancer.

Unfortunately however I am one of those people who is susceptible to mosquito bites, so I have taken quite a few precautions on that front (installing mosquito nets on my bedroom windows, carrying repellent and antiseptic wipes and burning citronella candles during the summer months).

As far as air travel goes, I am still very reluctant to get on a plane because of the associated risk. How much of a real risk it is no one really seems to know. It has been suggested that cabin pressure and general immobility during flight are the factors involved but the jury is out on how much the altitude contributes to it and if the wearing of compression garments (as a preventative measure) is advisable or not. Until I know more its one risk I wont be taking.

A Healthy Weight

There is a correlation between obesity and the risk of developing Lymphoedema after breast cancer surgery, making weight loss an important part of the recovery process.

A BMI greater than or equal to 30 poses a risk.

With that in mind I thought I would see what I could find to help anyone with a new year resolution to get fit and stay healthy. Not one to ever want to cut out the good stuff, I found these tips on how to stop overeating really interesting.

  1. Eat food from a smaller plates, it looks like you’re eating more
  2. Eat with your non-dominant hand and you’ll eat about 20% less
  3. Short fat glasses tend to hold more liquid than tall slim ones, so put your drinks in tall glasses to cut down on drinking
  4. Put a mirror in your kitchen or on your fridge and you’ll be more self conscious about what you’re eating
  5. Chew gum when you feel hungry to consume fewer calories
  6. Eat slowly and you’ll eat less
  7. Eat from red plates, it’s the colour associated with the word STOP
  8. Turn off your TV at meal times to eat up to 50% less
  9. Take a photo of all the unhealthy things you eat to cut down on your unhealthy eating by about a third
  10. Cut down on how many varieties of food you serve so you’re not tempted to try them all

First Signs of Lymphoedema – What To Do

I’ve been getting unusual sensations in my affected arm for the last 7 days so the question is…

What do I do now if this is the start of Lymphoedema!?

Ok, first and foremost, don’t panic! The sooner it’s treated the better the outcome. This is what I’m going to do…

  1. Call the Breast Care Nurse and explain what I’ve been experiencing and for how long. Arrange to see the hospital’s lymphoedema specialist.
  2. Call my MLD therapist and tell him all of the above and bring my monthly appointment forward.
  3. Continue with my rebounding workout because it’s a great lymph mover and keeps my arm supple.
  4. Revisit the YouTube links on SLD (simple lymphatic drainage).
  5. Throughout the day do the post-op physiotherapy exercises whenever I can. Aim to do these at least 3 times a day now.
  6. Take a flask of boiling water to work with me so I can de-congest my lymph whilst at my desk.
  7. Put sliced lemon in my filtered water whenever possible.
  8. Make sure I eat one banana a day.
  9. Drink pineapple juice.
  10. Move my grounding mat from my PC to my bed so I can get the benefit whilst I sleep.

At the moment I think that’s the best I can do whilst waiting to see the specialists.

Fingers crossed!

Signs and Symptoms

If there is one question that has literally driven me nuts over the last few months it is this:

How do I know if what I’m feeling is the onset of Lymphoedema?

Post surgery my body was obviously recovering from the trauma, not only that but I also experienced seroma and cording, coupled with the nerve damage its no wonder I went in to a complete tail spin about the whole thing.

Even now, my arm hasn’t fully recovered but pretty much every day I sense something and the series of questions begins again… What is that? Is this the start? What should I do? Have I done enough or did I do too much?… and so it goes on.

So, when a fellow breast cancer survivor asked me today, “Is what I’m feeling lymphoedema?” I was able to share with her what I have discovered about the early signs and symptoms and hopefully reassure her that she hasn’t suddenly become a hypochondriac.

– heavy arm
– feeling like you have a tennis ball in your arm pit
– pins and needles
– tight skin
– swelling anywhere from the fingers to the top of the arm
– feels warmer than the other arm
– when pressed the skin leaves an indent
– jewelry and or clothes become tighter
– arm goes hard

There are 4 stages to this:

  • Stage 0 (also called subclinical or latent): There are no visible changes to the arm, hand, or upper body at this point, but you may notice a difference in feeling, such as a mild tingling, unusual tiredness, or slight heaviness. You can have stage 0 lymphoedema for months or years before obvious symptoms develop.
  • Stage 1 (mild): The arm, hand, trunk, breast, or other area appears mildly swollen as the protein-rich fluid starts to accumulate. When you press the skin, a temporary small dent (or pit) forms; you may see this referred to as “pitting edema.” Such early-stage lymphoedema is considered reversible with treatment because the skin and tissues haven’t been permanently damaged. When you elevate the arm, for example, the swelling resolves.
  • Stage 2 (moderate): The affected area is even more swollen. Elevating the arm or other area doesn’t help, and pressing on the skin does not leave a pit (non-pitting edema). Some changes to the tissue under the skin are happening, such as inflammation, hardening, or thickening. Stage 2 lymphoedema can be managed with treatment, but any tissue damage can’t be reversed.
  • Stage 3 (severe): This is the most advanced stage, but it is relatively rare in people with breast cancer. At stage 3, the affected limb or area of the body becomes very large and misshapen, and the skin takes on a leathery, wrinkled appearance.

Once you have mild lymphoedema, you are at higher risk for moderate-to-severe lymphoedema than someone who has never had any symptoms. This risk persists even if your symptoms go away with treatment.

Every case is a little bit different, though. Some women have reported the sudden onset of mild or moderate lymphoedema without any warning signs or changes in feeling.

The goal is to reduce our risk of lymphoedema but its important to remember that if we do develop lymphoedema there are many good treatments that can help control the symptoms.

Source:  Breast Cancer.org and Medical News Today

Managing Lymphoedema

I found the video below very interesting for a number of reasons but the top one was that MLD (manual lymphatic drainage) is used/recommended in the USA for the prevention of lymphoedema (for those who are at risk following surgery). Although I have since surgery been having MLD, because of the cost of it and because it has not been recognised by the medical professionals that I have spoken to about it as an effective preventative measure, I have had a few doubts as to whether I should be funding my own treatment. Despite that, I have continued because I am in the camp that believes prevention is better than cure. This video however has given me the reassurance to continue and that I have in fact made a good investment in my own health and well-being by having the treatment.

The video goes on to advise that those who are at risk and want to reduce their risk should be well educated/informed about the condition/risks and of course exercise. Progressive resistance exercise with weights and aerobic exercise are highly recommended as studies have shown that those at risk of lymphoedema who did exercise had a lower risk compared to those who were at risk and didn’t.

Interestingly they are not recommending anyone at risk should wear a compression garment. Again I found this to be one of those questions which no one really seems to know the answer to. Although I have been measured for and now have a compression sleeve, I haven’t used it, and following the advice in this video now wont as a preventative measure.