Friday, January 22, 2010

Coping with death of a myeloma friend

Three months after my first stem cell transplant (2001) I experienced the first of my myeloma friends dying, death from myeloma.
Myeloma is a cancer which has no cure. At that time in New Zealand prognosis was 3 years, possibly up to 5 years with an ASCT, standard treatment was chemotherapy, thalidomide had not been approved. Death from myeloma was a reality.
Not long after diagnose I went through the process of confronting death. For me to move forward death could not be avoided; there was to be no denial.
Link: Confronting death from myeloma.
When I heard that “J” had died from the consequences of myeloma I was devastated, very distraught. “J” was a mentor to me, helping me from our first meeting at our myeloma support group with coping skills, myeloma, and transplant advice. In 1995 he had been ASCT patient No 4 in New Zealand, a myeloma and ASCT pioneer.
During the previous 3 months I had been very much focussed on me, my ASCT preparation, transplant and recovery. This left me with little time for anything else; I had forgotten that people die of myeloma.
The death of “J” jolted me back to reality.
Unable to cope adequately I approached the Cancer Society of NZ for counselling, a service I had used before not long after diagnose. My counsellor listened to me explain my problem, we discussed the situation then I was introduced to a range of coping skills. It was up to me to decide what would suit me.
From that counselling I have devised a routine that I use when a myeloma friend dies.
Myeloma can be such a selective and personal disease affecting us all differently.
One of my original sayings is repeated: “My illness, my body, my medication.” My myeloma friend has died, not me. My battle continues.
I sit alone and reminisce about my myeloma friend, their illness, the good times, the bad times, what they meant to me and the times we shared. At the conclusion of that I say the first of my farewells.
Next I ask Myra to sit with me, she usually knows the person. We talk together then say goodbye to our friend ending with a prayer.
The final step is to fill in a bereavement card and include a small note to the family. Only when I feel I have fully dealt with the death do I seal and post the card. That is the final farewell.

My myeloma friends mean a lot to me, they are my lifeline. In a corner of my heart I place a red rose for each one who has passed on. Rest in peace my myeloma friends.

John 5:24 “I tell you the truth, whoever hears my word and believes him who sent me has eternal life and will not be condemned; he has crossed over from death to life.”

6 comments:

Ermintrude said...

Sid -- Since the diagnosis of a relative with MM, I have faced my fears of loss - loss of the relative, loss of family structure, loss of the future and all the expectations that accompany it, selfish loss - but in the midst of coming to terms with all that "ending," I found a new beginning in living more "in the day," and less forward. I have been communicating with a variety of MM folks, each of whom offers me new insights and understandings to better support the loved one and the family. I am SO grateful to everyone for this and hope when I post on their sites that my words bring support, comfort and even some humor at the appropriate times. We are all "One" and each one of us has so much to offer... and each one is missed when he or she is no longer blogging... thanks for your reflections.

Sid said...

Thank you Ermintrude,
Your replies to mm bloggers are a great help not only to the blogger but also to the many people who read the blogs and replies without comment.
We try to live in the "now".
Sid

Anonymous said...

Hi Sid
I so appreciate the comments made by Ermintrude. I feel so lost at times. My friends don't seem to want to know, or maybe the fact he has been ill for so long they just think Oh another thing wrong!
There seems to be no support group here in Tasmania and my poor darling is not sure why his is in constant pain, he realy has no concept of what is wrong with him.
I did read that it would not have been wise for him to have any treatment considering his age (82) and his renal failure.
Hang in there Sid I need you.
Hildi in Tasmania

Sid said...

Hi Hildi,
I am here 24/7 for you and so is the international myeloma community.
Our thoughts and prayers are with you and your darling as you cope with this dreadful disease.
Sid

Hildi said...

Hi Sid
I thank you from the bottom of my heart. I cry in the shower so he can't see my tears.
It's all so unfair.
Hildi

Sid said...

Hildi,
Could you please email me on the email address in my profile.
mmsid@actrix.co.nz
I can give you some more help there.
Sid