I think much of the fear related to undergoing a stem cell transplant, or any medical procedure, is the fear of the unknown. Often, people know others who have faced the same battle and lost. This compounded my fear greatly.
In the instance of facing a complicated procedure, your imagination is your worst enemy. Do not use it. Do not consider the “what ifs.” Running the worst case scenarios through your head day in and day out is not going to mentally prepare you for the treatment you are facing.
I have some ideas on how to help patients mentally prepare.
Attempt to intellectualize your upcoming experience. Knowledge is power. It allows you to feel control over your disease. Feeling in control of the management of your own care is VITAL.
I have spent a lot of time feeling hopeless. This feeling will not benefit you in any way. Focusing on what will assist you in beating your disease will.
Some examples of actions you can take to take some control over your disease:
Follow the directions of your nurses and physicians. Ask questions when you are not clear on their advice. Ask a lot of questions, you’re paying a lot of money. Do not feel guilty for monopolizing their time.
Rearrange your home so tasks can be completed easily. You’ll be able to continue the activities that make you feel useful for a longer period. For example, I have everything I need to maintain my blog in a side table. I don’t have to get out of bed if I can’t, but I can still complete my tasks. Keep things you use frequently and enjoy within reach.
Learn something new. It doesn’t have to be health related. Give your brain some exercise. It will help make you feel younger and confident. I think the Nintendo DS is great, and they have brain games. It’s perfect for the hospital and waiting rooms.
Offer to speak with other patients. Many people ascribe to the learn it, do it, teach it principal. You’ll feel more confident in your success as a person if you can help someone who is in the position you were in just a month ago.
Call your best friend. Start a diary. Paint. Take up boxing. Find some creative outlet for your feelings. Whatever you’re feeling, it’s normal. People will understand as long as you don’t start behaving like a maniac.
Establish a list of support people. It’s pivotal to do this in advance. You are not asking for help. Not right now. You are preparing. It’s important to know who is willing to do what and what organizations will do what tasks. Make a big list and stick it on your fridge.
Set a limit on your grieving. Yes, grieving, a serious diagnosis is a loss. Feelings need to be kept under control. Allow yourself 5-30 minutes a day to wallow in your self pity. Then get over it for the day.
Live your life. Do not stop what you really want to do (as long as it does not interfere with your health). This is surprisingly liberating and empowering.
Get dressed! Yes, everday, even in the hospital. It makes you feel less like a sick person. I didn’t start dressing nicely until I became a mom. Then I took it up a notch when I was diagnosed with cancer. Looking good on the outside helps me feel better inside.
Look into alternatives. Discuss your thoughts on other treatment options with your health care providers to ensure that they do not interact with traditional treatment, but a change in diet, some herbal remedies, whatever it is you’re interested in trying is worth a shot if it’s safe.
I recommend asking your healthcare professionals for reputable sites if you’d like to do your own research on the internet. Not all sources are created equal.
The National Donor Marrow Website is a wonderful, accurate resource for detailing what to expect medically throughout the transplant process.
The National marrow program also explains the pathophysiology and effects of GVHD on transplant patients at http://www.marrow.org/PATIENT/Plan_Life_after_Tx/Managing_Long-Term_Effects_of_/Graft-Versus-Host_Disease/index.html
It also effectively explains the process of waiting for engraftment at http://www.marrow.org/PATIENT/Donor_Select_Tx_Process/Waiting_for_Engraftment_Days_0/index.html
For a simplified, complete explanation, see http://www.medicalistes.org/gvhd/docs/what_is_gvhd.html
In general, WebMD is an accurate source for health information or any well known, established institution, such as a hospital’s website or The American Cancer Societies' Page.
Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.
He has since died, and I took on the cause of making cancer care more transparent for everybody.
Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."
I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.
I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."