I am often approached by friends about the possibility of sharing my Blog with others. I have posted this on an open forum, so please, please, if you know someone who might benefit from reading it, please share.
Oftentimes, it is a situation where someone they know has been recently diagnosed and is struggling emotionally. It is difficult to comfort and counsel someone if you know nothing about how they might feel. I am so thankful to have had blogs to go to when I needed them, so I am honoured to be considered a place for people to go to when they need some help.
If you a newly diagnosed cancer (not necessarily multiple myeloma) patient, this is a good start. Reaching out to others who might understand how you are feeling helps to calm you and lessen that feeling that you are in this alone.
First, I don't like to refer to myself as a cancer patient. I am a WARRIOR. We are fighting a war. Each battle that we encounter is fought with everything we have in our arsenal. After each battle we rest, heal and strengthen in preparation for the next battle. Some of us will win the war. Some of us will battle to the death. An army does not curl up and give up after the loss of one battle. They regroup, consider lessons learned, and modify their strategy for the next time. It is that way with the cancer war as well.
New weapons of mass destruction are being developed all the time. I believe it is in your best interests to educate yourself fully on your disease and look at the research that is being done for future treatments. This not only provides you with a sense of control over what is happening to you, it empowers you to make decisions about your treatment and care, but also to make suggestions to your doctors. They cannot know everything about your cancer. They are always learning, but they are so busy caring for the patients they have, that they are sometimes behind a bit on the new stuff. You can research yourself and if you have a good oncologist with an open mind, you can work with them to try new things.
I suggest you go to some of the American (credible) sites and just see what is taking place in research for your particular type of cancer. One of the best sites I have found is
www.PatientPower.info . This site contains lots of info but what I really like is the video library of snippets on specific topics taken from medical conferences. You are seeing real doctors and specialists speaking about a wide range of topics from
how to deal with diarrhea to
cutting edge clinical trials and drugs in research.
If you have Multiple Myeloma, you may like
www.multiplemyeloma.blog . This one comes with a warning though. I have been following Pat Killingsworth's blog for a few years now and have gained so much knowledge about my disease, research, options, side effects, links, etc. Unfortunately, Pat, himself, has lost a few battles along the way. Most recently he is trying a "Hail Mary" tandem stem cell transplant to try to extend his life. All of us will one day be close to the end of our war and I find it inspiring and insightful to see how Pat is still rallying his troops and pulling new weapons out to fight each battle to the fullest. If you do go to his site, maybe go to the earlier posts first, or do some research via search or links. You may not be emotionally ready to jump into the posts of the past few months.
I do not discount the Canadian sites as sources of information. I find, though, that in the US, there are several large cancer research centres and speciality hospitals. They have a lot more money for research projects and share info on the clinical trials that they are running. As long as you understand that some of the trials available in the US are not available to Canadians, and that drugs coming into US mainstream treatment may not yet be approved for Canadian use, then there is no issue. Manage your expectations. If, however, you prefer a more practical approach, and want to know what is happening in Canada, right now...then stick to the Canadian sites. They offer a ton of info and support.
I wrote about Wellspring Niagara Cancer Support Centre in previous blog posts. I invite you to look back and review them. Just walking through the door of your local support centre will take a huge load off of your shoulders. If you are newly diagnosed, you have so many thoughts in your head, you cannot make sense of one. You have fears and concerns and questions that you cannot ask your spouse or loved ones. Been there, done that! Wellspring was there for me. They offer an ear to listen that has been in your shoes. (That is a strange visual image...LOL!) The volunteers have all been affected by cancer themselves and can relate to what you are feeling. Just knowing you can talk to someone about issues that would be too painful to discuss with your spouse or parents or children takes a huge weight off of you! It is a "must try" for all newly diagnosed cancer warriors. Please give it a shot!
Keep your sense of humour. Even if this is not a funny topic, you can lighten the load on yourself by finding some humour (sometimes quite dark) in your situation. Laugh as much as you can. Smile, even if you don't really feel like it at first...I guarantee it is infectious.
Start each day being thankful that you are still here to see the sun, clouds, rain and snow. Make an impact on someone else's life as well. When you go to the cancer clinic for treatment or tests, smile at the other patients. Engage them in conversation. They are fellow warriors in the same war.
If you like to write, start your own blog. If you are unsure, create it as a private blog, a diary or journal of sorts. You may find that you will decide to open it to the public after a time. Once you read others' blogs, you will feel more comfortable in sharing your own thoughts. The writing is therapeutic in and of itself.
Stay strong. Eat well and sleep or rest when you can. If you can, get some exercise. Do not forget to maintain your mental health as well. You need all the weapons you can find for this war. Keeping yourself strong is the most important. The fact that you are reading this tells me that you are already putting on your armour and readying yourself. Congratulations. You have already won the first battle. You did not roll over and wait for death after your diagnosis. You said "WTF...this is not over! I will win! I will beat this!" In the words of Dylan Thomas, Do not go gentle into that dark night!
Do Not Go Gentle Into That Good Night
Do not go gentle into that good night,
Old age should burn and rage at close of day;
Rage, rage against the dying of the light.
Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.
Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.
Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.
Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.
And you, my father, there on the sad height,
Curse, bless me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.
By Dylan Thomas
