SUPPORT AND INFORMATION

If you are visiting my blog because you or someone dear to you has been diagnosed with breast cancer then I hope this information helps you and you feel supported in your journey.

When I was diagnosed it took awhile for me to access the information I needed in order to understand what was happening in my body and how I was going to sort out the problem that had all of a sudden come into my world.

The best advice I can ever give is ask questions. Do not be afraid to ask all the questions under the sun. Write them down, email them and phone your medical team if you don’t have an appointment. Ask everything no matter how silly it may seem and never think you are being annoying or a pain – it is crucial for your piece of mind and your body that those questions are answered.

I tried my hardest to stay away from Dr Google as much as possible, but it is tough especially when you want to know what is going on. Google can be good however there is a lot of conflicting information out there and if we are honest most of it is the negative side of the illness. Cancer is no walk in the park, but on the whole it is incredibly over exaggerated as to how awful it is.

BREAST CANCER AND CANCER INFORMATION WEBSITES

NEW ZEALAND
Breast Cancer Foundation – http://www.nzbcf.org.nz
Cancer Society – http://www.cancernz.org.nz
Breast Cancer Coalition – http://www.breastcancer.org.nz

UK
Macmillian – http://www.macmillian.co.uk
Breast Cancer Care – http://www.breastcancercare.org.uk
Breakthrough Breast Cancer – http://www.breakthrough.org.uk
Breast Cancer Campaign – http://www.breastcancercampaign.org
Cancer Research UK – http://www.cancerresearchuk.org

USA
Young Survival Coalition – http://www.youngsurvival.org

SUPPORT GROUPS AND FORUMS
There are a lot of private support groups on Facebook and you generally have to have a diagnosis to get into them (yes believe it or not people who do not have cancer do try and get in there). There are also a lot of forums and discussion boards on some of the bigger charity websites.

NZ
Shocking Pink – http://www.shockingpink.org.nz
Breast Cancer Support – http://www.breastcancersupport.co.nz
Breast Cancer Network – http://www.bcn.org.nz

UK
Shine Young Adult Cancer Support (20, 30’s and 40’s) – http://www.shinecancersupport.co.uk
Younger Breast Cancer Network
Breast Cancer Care Forums – http://www.forum.breastcancercare.org.uk

SUPPORT CENTERS, EVENTS & PROGRAMMES
There are plenty of breast cancer support centre’s that offer alternative therapies and information on diet, exercise and other services including exercise and nutrition advice acupuncture, mindfulness courses, life coaching, financial advice, yoga, pilates and counselling. Some of them have funding too so treatments can often be free of charge.

NZ
The Cancer Society has a number of Supportive Care Programmes avaliable – http://www.cancernz.org.nz
PINC and STEEL Rehabilitation Trust – http://www.pincandsteel.com

UK
The Haven – http://www.thehaven.org.uk
Maggies – http://www.maggiescentres.org
Cancer Kin – http://www.cancerkin.org.uk

Breast Cancer Care run events called “Younger Women Together” which are run over two days. There are seminars and workshops to attend and all accomodation and food is funded. It’s for young women aged 45 and under who have been effected by Breast Cancer.
http://www.breastcancercare.org.uk/breast-cancer-services/talks-courses-local-support/younger-women-together

FERTILITY
If you are a younger woman or man and have not yet had children (or even if you are and were wanting to extend your family) you should inquire about fertility and it should be offered to you. Some chemotherapy drugs can affect fertility and in most cases if you are a woman your periods will stop for awhile.
In the UK under the NHS I was able to get eggs extracted and stored for 5 years.

PSYCHOLOGY
One of the first things I asked for was a psychologist. I had depression in the past and did not want it to rear it’s ugly head to take me into a black hole. It really helped me talking to someone about my treatment and in fact I sent them my blog to keep them updated so our sessions were really productive. I think a lot of people are scared to share their problems. Friends and family are often impartial and can’t give you the advice you need to really get out of certian ruts. With cancer – in my situation – no one I was close to had actually deal with it. I could’nt off load onto the people I cared about all the time as it would not have been fair to them. Psychologists are amazing, skilled professionals. Utilise one.

COOLING CAPS
Information coming soon…

http://penguincoldcaps.co.nz/

NAIL, TEETH AND BEAUTY ADVICE
Information coming soon…

Look good, Feel better

GENETIC TESTING
I have heard mixed things about genetic testing. Some medical professionals will not refer patients unless they have strong family links to the disease. In most cases you will not have the genes unless there is a significant family history. I had the testing done due to my age and the aggressive nature of my cancer in the fact that it is not as common. So with no family history and now no genetic links I am unsure why I got breast cancer in the first place. Unlucky, yep. All it takes if a meeting with a genetic councillor and a blood test. Within 8 weeks you will have the results. If you do have the BRCA 1 or 2 genes then you my be offered preventative surgery which can involve mastectomy (breast removal) and hysterectomy (ovary removal). It does not have to be immediate and you are encouraged to have a family if that is in your plans. Breast cancer and ovarian cancer are the two cancer’s connected to the gene. If you have the gene there is a 50% chance of passing it on.

AFTER CANCER
More information coming soon…..

All information listed here should not be used against professional medical advise. This information is provided on the basis of experience and experience only.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s