Although I have been in treatment for eleven months and I am currently in partial remission, my disease has a ninety per cent return rate. There is a very high risk that I shall be dead soon. So I am typing this very quickly.
I was diagnosed with plasma cell leukaemia in mid-December 2011. It is a rare and aggressive form of multiple myeloma – a blood cancer that will kill more than 10,000 people in the United States this year. After the tears and the self-pitying “why me?” questions, I got to work researching my disease. The news was grim. Life expectancy was two to eight months. Having never been lucky at cards, monopoly or lotto, I figured I would be dead before Santa got a chance to fill my stocking.
But I managed to hang on. I was able to see my two daughters and my husband blow out birthday candles in the first half of 2012. I ate a chocolate heart on Valentine’s Day and a chocolate egg on Easter. Okay, I ate chocolate every day after I got diagnosed. But I did have cancer.
I felt the chill when summer first turned to autumn and I saw the first flowers of spring. Every achievement was a hallmark of my existence. They were also a testament to my “brave fight”. As they stand around my casket, my family can proudly say: “Well at least she made it to her 52nd birthday.”
Just to give credence where it never seems to be due, my horoscope for the week I was diagnosed was so right: A change in perspective might be absolutely necessary.
X-rays, needles, baldness, the inability to have an orgasm, begging an abusive sibling to donate stem cells and debating who I should leave my paltry possessions to (what have I been doing all my life?) definitely changed my perspective. But these things were tolerable. Even the anticipated loss of family and friends and the ultimate question of what to wear to my own funeral faded in the exhilaration of actually waking up each morning.
Eight months after my diagnosis I knew I was going to surpass the grim statistics of my predicted decline. An appreciative grin turned around my permanently drooping mouth. Every breath was a new beginning. I became ecstatic over every bite of a family sized Cadburys bar.
Now I am grateful for every day that I wake up, for every time I talk to one of my children, for everything I touch, taste or feel, for the absolute cacophony of life - because today may be my last chance to experience it.
But that is bullshit. That’s just what everyone wants to hear. When you are seriously ill colours do not become brighter, roses do not smell sweeter, and people are not nicer. People are people. Whether you are here or gone, they will carry on being noble laureates or complete shits. We cannot change the universe because we are about to join it ethereally.
There’s a website called “It’s OK to die”. Their web page states: Those who have made their peace with life and who have made clear plans in advance for death, find that the end of life may be transformed into a powerful time unlike any other. Like one of my favourite superheroes, the Hulk, it’s not a power I asked for, nor do I want it. It’s never okay to die. If given a choice, I would live. I think anyone would.
A thirty-five year old woman who died of breast cancer was interviewed and stoically said she was ready to go because there couldn’t be a better day in the future than she’d already had. I’m glad she found peace and power, but I prefer a quote attributed to George Clooney. The beginning was a little boring so I substituted it for blah’s: “blah, blah, blah … It's a mean thing, life.”
Life is a mean thing. As I sit here after using half a light-brown make-up pencil to try and create some believable brows where mine used to be, I am depressed. I am happy that the macabre stem cell collection, transplant, and hospital stay are behind me and that physically I feel seventy-five per cent like my pre-diseased self. But I am afraid of what is ahead. Like a yogurt that hides in the corner of a fridge until way past its sell-by-date, one day my health will give way. The cancer will take over and I will be gone. That day may be very soon.
So suddenly I am faced with the concept that I haven’t actually contributed anything during my life. Perhaps it has been my role to simply be a building block, a stepping stone for the next generation of women to walk on as they pursue their goals. On the evolutionary scale we are all an incremental version of the perfect human being. Instead of one hundred per cent clever or beautiful, some have to be half as clever, three-quarters as talented, one-third as ambitious. So I take my place among the slightly successful. Someone has to do it. But there is nothing like facing your mortality to make you wonder how you could have better used your time here on earth.
This story is my contribution. It is my way of making up for all the unproductive days. I sincerely hope it helps. Good luck, all the best, and see you on the other side.
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Re: My blood cancer log
Kirsten wrote:
> I am trying to think of a reply. All I can say is "WoW." Very
> powerful.
There are some things that shouldn't be replied to...because doing so lessens them. This is one of those things.
there are three levels of reaction that any performer looks for. Applause is good. A Standing Ovation is better.
A period of total silence is the best tribute.
> I am trying to think of a reply. All I can say is "WoW." Very
> powerful.
There are some things that shouldn't be replied to...because doing so lessens them. This is one of those things.
there are three levels of reaction that any performer looks for. Applause is good. A Standing Ovation is better.
A period of total silence is the best tribute.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: My blood cancer log
I wrote the above last night...and this morning realized I needed to explain. What Marie wrote here is so powerful, and hits so completely to the heart of most of us, that only the brashest/newest could have a response. I guess that means me; in one way it hits 'home' hard. In another...I haven't begun treatment yet. I start in about a week (some dental work needs doing), so in a very real way, I'm not experiencing 'all this' yet.
Shoot, it still doesn't feel real yet.
She has come the closest, however, to getting me to the 'this is real' stage. I can't say that I know how she feels....but I will, and that frightens me.
Shoot, it still doesn't feel real yet.
She has come the closest, however, to getting me to the 'this is real' stage. I can't say that I know how she feels....but I will, and that frightens me.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: My blood cancer log
New to Myeloma Beacon forum. Finding that reading posts like yours Marie help me to come to grips with some of the same feelings. Like you Dianalad I am fairly new to this disease and trying to find my footing.
I had my primary doctor ask me if I would like the name of a support group..which I declined. Now I am not so sure I should have. What is consuming me is the feeling that I am floating out there in space and everyone else is grounded...and I do feel alone...finding myself getting rid of so many things that I've held on to forever.... Can't focus on anything......wanting to retreat to sleep..and sleep helps tremendously for tired feelings, but not so much for communicating with my family.
So I am going to seek out a support group...and starting with this forum to learn. Thank you Marie... Just helps to read what others are going through. Each day brings a better outlook. Have been going through chemo and scheduled for a stem cell transplant in May. Going to do whatever I can to fight this thing.
I had my primary doctor ask me if I would like the name of a support group..which I declined. Now I am not so sure I should have. What is consuming me is the feeling that I am floating out there in space and everyone else is grounded...and I do feel alone...finding myself getting rid of so many things that I've held on to forever.... Can't focus on anything......wanting to retreat to sleep..and sleep helps tremendously for tired feelings, but not so much for communicating with my family.
So I am going to seek out a support group...and starting with this forum to learn. Thank you Marie... Just helps to read what others are going through. Each day brings a better outlook. Have been going through chemo and scheduled for a stem cell transplant in May. Going to do whatever I can to fight this thing.
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Andreainaz - Name: Andreainaz
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: November 2012
- Age at diagnosis: 66
Re: My blood cancer log
Marie,
I read your log then walked away to think, then read your log again and discussed it with my family. I slept and woke up thinking of what you have written. So now I am typing a reply because I feel I need to. There are a couple of things I would like to say.
You write beautifully. It is full of emotion and I can imagine sitting on a hospital bed trying to draw on eyebrows (I didn't completely lose mine, there were a few tufts here & there). In some ways you took me back to my bad treatment days. During my multiple myeloma journey I searched for and found the Beacon only after I went into remission. The emotional upheaval and the zapped energy levels that comes with diagnosis, treatment and prognosis would have been reflected in my writing and I am not sure I would have benefitted. Others may have. What you have written has already helped other multiple myeloma patients.
You not only write "I am depressed" some of the language you use is depressing. I dont suffer from depression but have lived with people who have and it is debilitating. My husband was clinically diagnosed with depression prior to my diagnosis but it wasn't being treated effectively. The impetus was of course the start of my multiple myeloma journey. He HAD to deal with his depression - he had to be as fit as he could be to look after the children. I do not know if you have clinical depression nor do I need to know. I do not know your expected time frame - I dont know my time frame either. But as you are having treatment for your plasma cell leukaemia and have written "If given a choice, I would live. I think anyone would." do you have anything else that if it was treated you would benefit?
Lastly, Cadburys!!!! PUHHHHLEASSSE - get some great chocolate (with that wonderful melt-in- the mouth cocoa butter) not run of the mill stuff. Of course this is subject to personal taste
I read your log then walked away to think, then read your log again and discussed it with my family. I slept and woke up thinking of what you have written. So now I am typing a reply because I feel I need to. There are a couple of things I would like to say.
You write beautifully. It is full of emotion and I can imagine sitting on a hospital bed trying to draw on eyebrows (I didn't completely lose mine, there were a few tufts here & there). In some ways you took me back to my bad treatment days. During my multiple myeloma journey I searched for and found the Beacon only after I went into remission. The emotional upheaval and the zapped energy levels that comes with diagnosis, treatment and prognosis would have been reflected in my writing and I am not sure I would have benefitted. Others may have. What you have written has already helped other multiple myeloma patients.
You not only write "I am depressed" some of the language you use is depressing. I dont suffer from depression but have lived with people who have and it is debilitating. My husband was clinically diagnosed with depression prior to my diagnosis but it wasn't being treated effectively. The impetus was of course the start of my multiple myeloma journey. He HAD to deal with his depression - he had to be as fit as he could be to look after the children. I do not know if you have clinical depression nor do I need to know. I do not know your expected time frame - I dont know my time frame either. But as you are having treatment for your plasma cell leukaemia and have written "If given a choice, I would live. I think anyone would." do you have anything else that if it was treated you would benefit?
Lastly, Cadburys!!!! PUHHHHLEASSSE - get some great chocolate (with that wonderful melt-in- the mouth cocoa butter) not run of the mill stuff. Of course this is subject to personal taste
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: My blood cancer log
I echo Kristen's thoughts -- Wow.
Given what you have shared, you are not the " half as clever, three-quarters as talented, one-third as ambitious" person you claim to be. I am sure you have made a major impression on everyone's life you have touched. I wish you all the best.
Lyn
Given what you have shared, you are not the " half as clever, three-quarters as talented, one-third as ambitious" person you claim to be. I am sure you have made a major impression on everyone's life you have touched. I wish you all the best.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Who to tell?
There are hundreds of blogs, video diaries, and discussion forums by people who are about to rest in peace. They want the world to know what they are facing, they want to reach out to others going through similar pain, and they want to leave a piece of themselves behind for all eternity, or until YouTube is replaced by something better.
I felt completely opposite. I was ashamed of myself and of my body. Like an alcoholic or a gambler I now had a horrible, embarrassing, dirty secret. I didn’t want anyone to see me like this. I wanted to hide. But you cannot stay under a rock forever because friends call, relatives want to skype, and employers want to know what’s going on.
I set out to minimise what I considered to be collateral damage. I didn’t want people to know because I didn’t want them to edit their conversation to stay away from things that might be sensitive to a dying person. I wanted to be as normal as possible for as long as possible.
On Friday December 16th when I was officially diagnosed, only Alex was in the hospital with me. He rang our younger daughter Charlotte, who was at a friend’s house. Let’s call them the Smiths. So minutes after the doctor confirmed I had plasma cell leukaemia, Charlotte knew and the Smith’s knew.
The next day, Saturday, Alex rang his boss and told him. His boss told everyone else. I refused to go to his office Christmas party that evening. I pictured myself as a tiny person, like Alice in Wonderland sitting on an oversized chair with my legs dangling. The guests would all lean over and stare at me. Over their swirling glasses of pinot noir they would ask humiliating questions and tutt tutt with feigned concern.
“Are you in any pain?
“Poor thing.”
“How long have you got?”
“Such a shame.”
“What’s it like to be dying?”
I felt like the pity train was already in full gear.
My older daughter Abby was coming home from America in three days’ time. I rehearsed the conversation I would have with her in my head. Then I rang her.
“Hi honey. I’m sitting by the Christmas tree. I’m really looking forward to you coming home.” (sniff) It was no good. I couldn’t tell her. I was on the verge of tears so I handed the phone to Charlotte.
“Should I say anything?” Charlotte whispered.
I shook my head. I couldn’t do it over the phone. Suddenly I was heartbroken over the limited amount of time I would have with Abby and the time that was already gone. It went deeper than the hours that would be robbed from me because of my disease. Even if I survived, at age 23, Abby would never live with us again. In that moment, sitting by the tree full of ornaments the family had chosen together, I was wistful that everything for me, as the mother I had been to her for so many years, was now over.
On Tuesday Charlotte and I picked Abby up from the airport at 5am. The conversation on the way home was fun and fanciful and I didn’t want to break the mood. It wasn’t the right time. We got home and I helped Abby make her bed. Alex gave me a look that I knew meant “Have you told her?” and I just walked past him. She wanted a shower and something to eat, then a nap. There was plenty of time. She deserved a few minutes of happy nostalgia before I ruined her day. I took a sleeping pill. A few hours later we were both in the living room.
Abby was curled up on one of the softly padded chairs. I pictured her as a ten-year-old, sitting opposite me, smiling and showing me a drawing she had just made. It was a dolphin, her favorite thing to draw. I was upset about something and she gave me the dolphin and asked: “Are you alright?” I was so proud of her, the way she knew me. The way I didn’t have to say anything. I was as proud of her on the day she drew that beautiful dolphin as I was on this day when she asked me again:
“Are you alright?”
“I have some bad news.”
Abby looked into my eyes and waited for me to finish.
“I have a type of blood cancer and it is really bad.”
She hugged me and we didn’t say anything for ages. Then she asked me lots of intelligent questions about my treatment and my doctors. She was always a good listener and as usual I told her everything. Then I immediately regretted giving her such a weight to carry on her shoulders.
Now that the immediate family knew, it was time to tell the relatives overseas. Phoning and trying to explain what was going on was going to be too hard. There would be too much emotion and too many questions and I could only speak to one person at a time. So I composed an email. My mother did not have a computer so I sent a two-page explanation of what I was going through to my sister. My sister stood in front of my mother and my younger brother Ben and read the letter out loud. From what I gathered, it sounded like the reading of my letter was like the reading of a will. They all cried and said what a wonderful human being I had been. I was glad I wasn’t there.
My mother-in-law lived by herself in England. She was on the internet, so I sent her the same two page email. The next day there was a reply:
I have just read your message and am so horrified but you sound positive which is admirable. If you would like me to come over, I will of course. I always remember how good it was when you came to visit Edward and me - family are so very important.
Fuuuuuuuuccccckkkk! She had me dead already. She said my positivity was “admirable”. Synonyms for “admirable” were commendable and unreal. Also she equated her visiting me with us visiting Edward. We went to see him because he had only days to live. Fuuuuuuuuccccckkkk! To add insult to injury she called and said:
“I can’t help thinking about your poor mother. She has Ben and now you”. (My brother Ben has multiple sclerosis). “I think it’s great that you’re so positive.” (I’m fooling myself).
She sounded like she had a cold or flu so I alluded to it.
“Are you unwell?” I asked.
“Yes, I am short of breath and if it doesn’t clear up I will go back to the doctor.” (pause) “But they will be able to fix me”.
It was not a pleasant conversation but she was probably the most objectively honest of everyone I told. The last research I did gave me one year to fifteen months to live. So my mother-in-law was right to be so gloomy. They could fix her but they probably couldn’t fix me.
By now the kids knew, our families knew, Alex’s work knew, my children’s friends knew and the Smith’s knew. It was getting exponential. I needed to set some boundaries about who else to tell and when. It was my disease and I wanted full rein over it. When there was good news it was simple. Sharing the details of a wonderful holiday or a new puppy was easy. But bad news was different. It was a burden. You had to know who could handle it.
When Alex called Charlotte from the hospital she was naturally upset. The Smiths comforted her and that meant they were privy to my situation. But I was agreeable to that. They were like family and I trusted them with my story. When Mrs Smith rang I updated her on everything I was going through medically although I didn’t admit to the stress I was suffering.
“What is the prognosis?”
“The doctor won’t tell me. It all depends on how my body reacts to the drugs.”
I told her I googled my disease, and she said “yes” several times, enough to make me think she had been doing research as well. I choked up several times but fought it back. I was sure she heard me swallowing hard and fighting to get my breath back but I carried on. I told her about the steroids and how they made me feel and the chemo and the weekly hospital visits. I told her I was seeing the doctor on Monday and I would learn more as it was the first time I would be seeing him since this started. I didn’t tell her I was terrified but I did tell her I was taking a sleeping pill every night and used the phrase “in shock” several times. She said if I needed anything to let her know. She promised not to tell anyone else what I was going through. She sounded sympathetic verging on pity and that’s exactly what I didn’t want to hear. I can’t stand the pity.
When I hung up Abby asked:
“Doesn’t it feel good to unload?”
“Sure.”
But it didn’t feel good. I had now burdened a good friend with my troubles. I wanted to take it back, to release her from any obligation. So in an attempt to boost the impression that I was really okay, we invited the Smiths for dinner two weeks after I was diagnosed. Mrs Smith rang on the Saturday we were expecting them. She was not feeling well and because of my lowered immunity from the chemo drugs, she felt they should not come to dinner. I told her I appreciated her concern. But I was actually devastated. That phone call confirmed my new status. Anyone I told would see me as a piece of delicate crockery teetering on the edge of a shelf. One whiff of a breeze and I was history. I had always been solid and dependable but never again. It backed my resolve to tell as few people as possible.
I especially didn’t want to tell the Selitzky’s. They were the nosy friends who wanted to know everything about your life. I dreaded their holiday drinks invitation which came on December 28th. Alex told them I was not well and that I was going to the doctor’s the next day. Both of these things were true but I knew it wouldn’t be a good enough answer for long. I started wrestling with the idea of whether I should begin to tell people the truth, partial truth, or be totally ambiguous. Unfortunately, after refusing to meet with them several times, we were sitting outside a café having lunch, when Mrs Selitzky walked past. Her demeanor was like ice. She confronted me:
“Are you still sick?”
It was a challenge as sure as if she had slapped me across the face with a white glove.
“Yes,” I said between mouthfuls of a chicken and avocado panini. I didn’t feel bad. I hadn’t lied, I just hadn’t told the whole truth. Alex disagreed with my stance.
“Mrs Selitzky was probably just worried about you.”
Yeah, right. Women can decipher other women’s body language and hers said “I don’t believe you”. Alex and I were on opposite sides again. If he were going through this he would tell everyone. But I would rather endure anger than pity.
I had to quit my daycare job. The infection risk was too high. I wrote a letter to the boss explaining that I wouldn’t be returning to work for medical reasons. The teachers organised a farewell dinner for me. I didn’t want to go. I didn’t want to be quizzed on why I had to leave. What should I tell them? There’s something about the word cancer that strikes a profound fear into everyone and I didn’t want to say it. I shut my eyes and saw a pity party again so I started researching what could make me leave my job but not be quite as serious as cancer. I came up with chronic anaemia. It was treatable and brought on by infection. I articulated the definition by rote like reciting the answer to a biology pop quiz. I offered the analysis over dinner. They appeared satisfied until one teacher said:
“You don’t look anaemic.”
My face flushed red. Did she think I was sicker than I let on, or not as sick?
“I’m on medication, so I’m not very anaemic right now.”
I said my farewells, got my gift voucher and ran out of there. In my car I hit my head against the steering wheel. That poem came back to me: Oh what a tangled web we weave when first we practice to deceive. That night I had a dream about the two lives I was leading. I dreamt that I was working at a new daycare when the staff from my previous daycare saw me through the window. They were shocked to see me working somewhere else.
“What are you doing here?” They asked in unison.
Oh sh--.
In my dream I was unable to explain it to them and they walked away in disgust. They didn’t believe I was sick at all. They thought it was all just a scam to leave my job and go work somewhere else. I couldn’t tell them the truth. But the fact that it had crept into my dreams was a sign that I was agitated about the deception. Was I being ridiculous to cover up what I was really going through? Should I shout it out to the world?
In spite of my apprehension about making social dates I had a strong desire to see everyone one last time. My best friend was Sarah. She called about two weeks after my diagnosis. I loved Sarah and I actually wanted to share this awful thing with her. But I didn’t want her to worry. I was thinking of her life, her young children, all the things she had to deal with already. I went to her house for coffee and I told her the half-truth I concocted for the teachers.
“It’s chronic anemia. My immune system is compromised so I can’t be near sick people or children who have just been vaccinated.”
“I was anemic when I was pregnant with my youngest. Are they giving you iron?”
“Ye-es.”
My heart sank. I didn’t want to lie and I was beginning to doubt that I could keep it up. But it was so wonderful being with her, talking about our kids, laughing and chatting and having a cup of coffee that in the end I did not regret my decision to “lighten” my disease. I would have hated to sit there in her kitchen and have the whole conversation be about my devastating illness. So I relaxed and it was like old times as we sat catching up on gossip. But for some reason she decided to tell me a story about the child of a relative who recently died of cancer at age four. He was diagnosed at age two, and went into remission for two years before the cancer came back with a vengeance. I was thinking that in my research two years seemed to be the average. I told her how sorry I was, which I was, but I was also thinking: I’ve probably got two years too. I didn’t want to talk about cancer, not today. It was a fantastic morning and the only thing that spoiled it, besides the shadow of death hanging over my shoulder was that I had to finish the day by getting my blood taken.
I went to see my American friend, Lily. Not knowing about my disease, Lily gave me a cup of coffee and immediately started telling me about a young actor named Andrew Whitfield from the series Spartacus who died of leukaemia in 2011. I was beginning to think cancer was all anyone ever talked about. Was I giving off some sort of cancer vibe that made everyone tell tragic stories? Obviously I was a little sensitive. But I was glad she could speak freely. If she knew I had leukaemia we wouldn’t have had the same conversation because she wouldn’t want to talk about it in front of me. When I got home I looked up Andrew Whitfield. He died eighteen months after being diagnosed with non-Hodgkin’s lymphoma. It had my heart thumping. He was only 40.
There were other good friends who I considered telling, but I just couldn’t bring myself to do it. These were the Hills. We agreed to go out to dinner with them in early February and I was seriously considering telling Mrs Hill before we went. They were such good friends and trustworthy like the Smiths and I felt disloyal not telling them. I even imagined the scenario of me sitting at dinner and going through the whole story in detail. But as the time got closer I chickened out. I wanted to enjoy my evening, not make it depressing. So we sat and talked and laughed and had a “normal” night. The funny thing was that the Hills were always completely candid about their medical issues. But nothing was as big as the bombshell I was sitting on. Months later, after I lost my hair, they invited us out to dinner again. I decided if they guessed I was wearing a wig I would come clean and tell them the whole truth. If they didn’t, I would continue to keep my illness a secret. Whether they suspected or not they never said anything. It was stressful sitting in the restaurant in that wig. To me it was so obviously false it was as if I had a Halloween mask on my face. But I was determined to be strong. If I told them about my disease it would be like whining about something I had no control over. They would have to feel sorry for me and it would change our relationship forever. I couldn’t do it. I was in a fight for my dignity.
The friends I saw on very rare occasions were easier to fool. Many times it was a phone call and an invitation I could make an excuse to get out of. A friend who visited from England said she wouldn’t be back for a few years. I ticked her off my list of people I wouldn’t have to explain anything to. We had friends for dinner who asked if I had lost weight. That was the only thing they noticed. Another night I had dinner with a couple of old work friends. I forgot about my disease until they talked about future plans. It was crushing because that’s what ultimately separated me from them. I probably didn’t have a future. I decided not to go out to dinner again. I didn’t want to lie anymore and I didn’t want to hear about plans I could not be a part of.
Every few days I thought about just coming clean and telling everyone. But then how exactly was I supposed to burden others with what I was going through? When was I supposed to introduce it into the conversation?
“How are you? Your children are great and your life is full? That’s amazing. Me? Not much. Oh well yes, there is this one new thing. I’m dying of leukemia.”
Alex and I watched a new season of the TV show The Big C. The main actor, Laura Linney, who played Cathy was exceptional. In the show she was a teacher who got cancer. Her students found out and had a cupcake fundraiser for her. The cupcakes had a letter “C” on them which was for Cathy but looked like they were for Cancer. The look of pity on their faces said it all. It’s why she didn’t want them to know. It was exactly what I was going through.
Of course the medical profession I had been dealing with on a weekly basis all knew. It was printed as plain as day on every piece of paper they produced. “Plasma Cell Leukaemia” was everywhere you looked. But there was another professional I had to tell. Before my stem cell transplant I had to get an okay from the dentist. I was supposed to ask him if there was anything in my mouth that could increase my chances of developing an infection. One day in April I rehearsed these lines at home, in the car and on the walk to the dentist. I wanted to get it right and I wanted to get used to hearing the words so I wouldn’t get emotional. When I sat in the dentist’s chair I said the lines perfectly. I didn’t know what sort of reaction I’d get but it was purely clinical.
“Why are you having a stem cell transplant?”
“I have leukaemia.” I was proud of my even tone of voice.
“I have a friend with stomach cancer. They might do a stem cell transplant on him as well. How does it work?”
He showed no pity. He just wanted the practicalities of how it was done. I went through it with him. It was actually more conversation than I wanted to have, especially with his hand in my mouth.
“You look after your teeth well. They shouldn’t cause you a problem.”
“Thank you.”
When I left I was glad he was so indifferent to my condition. It made me feel like it wasn’t worth worrying about.
Although it could be awkward for me to keep my friends in the dark, I didn’t regret the decision which allowed my relationships to continue on their accustomed path. I had a work colleague more than twenty years ago named Paula, who got sick. We had only just moved to our neighborhood and didn’t know anyone. Alex brought home two spare tickets to a sporting event so I called Paula to invite her and her partner. She told me over the phone that she couldn’t go because she just found out she had cancer. I can’t remember what type of cancer now. She wasn’t a close friend or confidante. In fact I didn’t really like her all that much. For the next few weeks I debated about what to do. I didn’t know if I should call or visit, or what I should do or say. Was it expected that I would change my relationship with her from casual acquaintance to attentive nursemaid because by chance I found out she was dying? The truth was I was afraid to see her. So I avoided it. I had a brand new baby so I used that as an excuse. I didn’t go to her house and I didn’t call. A few months later she was dead. Then of course I regretted not going to see her. I beat myself up about it. Couldn’t I have spared just one evening? On the way to her funeral I wrote her widowed partner a letter explaining why I hadn’t had the time to visit. I cried not because I’d miss her, but because I felt so damn guilty. I didn’t want to put anyone in my life through that. My casual acquaintances would be able to come to my funeral (or not) and honestly say:
“I never went to see her because I didn’t know.”
It seemed that none of my friends or acquaintances was suspicious that I was hiding the biggest secret of my life and I was glad of that. I felt that I had burdened enough people with the truth– my family overseas and my family in New Zealand, Alex’s co-workers and our friends the Smiths. One day Charlotte said:
“I understand why you don’t want to tell anyone. Whenever I’m at the Smiths they want to know how you are. It’s all they talk about.”
Although deception is a bumpy path it was the right one for me. I was not the type who required a support group to unload on, a website dedicated to my unfortunate circumstances or a cupcake with the letter “C” on it. I didn’t want to be the person everyone talked about. Instead I had my family if I wanted to talk about it and I had my friends to help me forget about it if only for an hour or two. It was a good combination.
Ignorance is bliss and it was easy to fool everyone while I looked “normal”. Two weeks after my first high dose chemotherapy on May 7th 2012, my head looked like a comical comb-over. Two weeks after the second high dose of chemotherapy in July, my head was a cue ball except for a couple of determined strands. I didn’t know how I was going to maintain any semblance of normality with no hair. So I retreated. My socialising went down to zero. I didn’t call anyone and I didn’t arrange anything. I never initiated contact. It didn’t bother me. I preferred not having any obligations or having to make any excuses. It was my disease, and it was enough of a weight around my neck without the added burden of how it affected others.
There was another reason to lay low beside the fact that I looked the part of a dying woman. To be honest, when you think you are about to breathe your last, everyday conversation has limited interest. While I looked the part of a healthy woman I enjoyed taking part in chats about family, children, pets, jobs, even the weather. But when I looked in the mirror and saw this strange woman looking back at me, I walked through a door exiting my previous life. I no longer gave a sh-- about the weather, the latest iPhone or Angelina Jolie. Listening to complaints about unappreciative family members or difficult salespeople made me want to scream. It’s a cliché, but when you have your health you have everything, including the ability to listen to banal conversation. So it was better that I hid away. I had nothing good to say.
I felt completely opposite. I was ashamed of myself and of my body. Like an alcoholic or a gambler I now had a horrible, embarrassing, dirty secret. I didn’t want anyone to see me like this. I wanted to hide. But you cannot stay under a rock forever because friends call, relatives want to skype, and employers want to know what’s going on.
I set out to minimise what I considered to be collateral damage. I didn’t want people to know because I didn’t want them to edit their conversation to stay away from things that might be sensitive to a dying person. I wanted to be as normal as possible for as long as possible.
On Friday December 16th when I was officially diagnosed, only Alex was in the hospital with me. He rang our younger daughter Charlotte, who was at a friend’s house. Let’s call them the Smiths. So minutes after the doctor confirmed I had plasma cell leukaemia, Charlotte knew and the Smith’s knew.
The next day, Saturday, Alex rang his boss and told him. His boss told everyone else. I refused to go to his office Christmas party that evening. I pictured myself as a tiny person, like Alice in Wonderland sitting on an oversized chair with my legs dangling. The guests would all lean over and stare at me. Over their swirling glasses of pinot noir they would ask humiliating questions and tutt tutt with feigned concern.
“Are you in any pain?
“Poor thing.”
“How long have you got?”
“Such a shame.”
“What’s it like to be dying?”
I felt like the pity train was already in full gear.
My older daughter Abby was coming home from America in three days’ time. I rehearsed the conversation I would have with her in my head. Then I rang her.
“Hi honey. I’m sitting by the Christmas tree. I’m really looking forward to you coming home.” (sniff) It was no good. I couldn’t tell her. I was on the verge of tears so I handed the phone to Charlotte.
“Should I say anything?” Charlotte whispered.
I shook my head. I couldn’t do it over the phone. Suddenly I was heartbroken over the limited amount of time I would have with Abby and the time that was already gone. It went deeper than the hours that would be robbed from me because of my disease. Even if I survived, at age 23, Abby would never live with us again. In that moment, sitting by the tree full of ornaments the family had chosen together, I was wistful that everything for me, as the mother I had been to her for so many years, was now over.
On Tuesday Charlotte and I picked Abby up from the airport at 5am. The conversation on the way home was fun and fanciful and I didn’t want to break the mood. It wasn’t the right time. We got home and I helped Abby make her bed. Alex gave me a look that I knew meant “Have you told her?” and I just walked past him. She wanted a shower and something to eat, then a nap. There was plenty of time. She deserved a few minutes of happy nostalgia before I ruined her day. I took a sleeping pill. A few hours later we were both in the living room.
Abby was curled up on one of the softly padded chairs. I pictured her as a ten-year-old, sitting opposite me, smiling and showing me a drawing she had just made. It was a dolphin, her favorite thing to draw. I was upset about something and she gave me the dolphin and asked: “Are you alright?” I was so proud of her, the way she knew me. The way I didn’t have to say anything. I was as proud of her on the day she drew that beautiful dolphin as I was on this day when she asked me again:
“Are you alright?”
“I have some bad news.”
Abby looked into my eyes and waited for me to finish.
“I have a type of blood cancer and it is really bad.”
She hugged me and we didn’t say anything for ages. Then she asked me lots of intelligent questions about my treatment and my doctors. She was always a good listener and as usual I told her everything. Then I immediately regretted giving her such a weight to carry on her shoulders.
Now that the immediate family knew, it was time to tell the relatives overseas. Phoning and trying to explain what was going on was going to be too hard. There would be too much emotion and too many questions and I could only speak to one person at a time. So I composed an email. My mother did not have a computer so I sent a two-page explanation of what I was going through to my sister. My sister stood in front of my mother and my younger brother Ben and read the letter out loud. From what I gathered, it sounded like the reading of my letter was like the reading of a will. They all cried and said what a wonderful human being I had been. I was glad I wasn’t there.
My mother-in-law lived by herself in England. She was on the internet, so I sent her the same two page email. The next day there was a reply:
I have just read your message and am so horrified but you sound positive which is admirable. If you would like me to come over, I will of course. I always remember how good it was when you came to visit Edward and me - family are so very important.
Fuuuuuuuuccccckkkk! She had me dead already. She said my positivity was “admirable”. Synonyms for “admirable” were commendable and unreal. Also she equated her visiting me with us visiting Edward. We went to see him because he had only days to live. Fuuuuuuuuccccckkkk! To add insult to injury she called and said:
“I can’t help thinking about your poor mother. She has Ben and now you”. (My brother Ben has multiple sclerosis). “I think it’s great that you’re so positive.” (I’m fooling myself).
She sounded like she had a cold or flu so I alluded to it.
“Are you unwell?” I asked.
“Yes, I am short of breath and if it doesn’t clear up I will go back to the doctor.” (pause) “But they will be able to fix me”.
It was not a pleasant conversation but she was probably the most objectively honest of everyone I told. The last research I did gave me one year to fifteen months to live. So my mother-in-law was right to be so gloomy. They could fix her but they probably couldn’t fix me.
By now the kids knew, our families knew, Alex’s work knew, my children’s friends knew and the Smith’s knew. It was getting exponential. I needed to set some boundaries about who else to tell and when. It was my disease and I wanted full rein over it. When there was good news it was simple. Sharing the details of a wonderful holiday or a new puppy was easy. But bad news was different. It was a burden. You had to know who could handle it.
When Alex called Charlotte from the hospital she was naturally upset. The Smiths comforted her and that meant they were privy to my situation. But I was agreeable to that. They were like family and I trusted them with my story. When Mrs Smith rang I updated her on everything I was going through medically although I didn’t admit to the stress I was suffering.
“What is the prognosis?”
“The doctor won’t tell me. It all depends on how my body reacts to the drugs.”
I told her I googled my disease, and she said “yes” several times, enough to make me think she had been doing research as well. I choked up several times but fought it back. I was sure she heard me swallowing hard and fighting to get my breath back but I carried on. I told her about the steroids and how they made me feel and the chemo and the weekly hospital visits. I told her I was seeing the doctor on Monday and I would learn more as it was the first time I would be seeing him since this started. I didn’t tell her I was terrified but I did tell her I was taking a sleeping pill every night and used the phrase “in shock” several times. She said if I needed anything to let her know. She promised not to tell anyone else what I was going through. She sounded sympathetic verging on pity and that’s exactly what I didn’t want to hear. I can’t stand the pity.
When I hung up Abby asked:
“Doesn’t it feel good to unload?”
“Sure.”
But it didn’t feel good. I had now burdened a good friend with my troubles. I wanted to take it back, to release her from any obligation. So in an attempt to boost the impression that I was really okay, we invited the Smiths for dinner two weeks after I was diagnosed. Mrs Smith rang on the Saturday we were expecting them. She was not feeling well and because of my lowered immunity from the chemo drugs, she felt they should not come to dinner. I told her I appreciated her concern. But I was actually devastated. That phone call confirmed my new status. Anyone I told would see me as a piece of delicate crockery teetering on the edge of a shelf. One whiff of a breeze and I was history. I had always been solid and dependable but never again. It backed my resolve to tell as few people as possible.
I especially didn’t want to tell the Selitzky’s. They were the nosy friends who wanted to know everything about your life. I dreaded their holiday drinks invitation which came on December 28th. Alex told them I was not well and that I was going to the doctor’s the next day. Both of these things were true but I knew it wouldn’t be a good enough answer for long. I started wrestling with the idea of whether I should begin to tell people the truth, partial truth, or be totally ambiguous. Unfortunately, after refusing to meet with them several times, we were sitting outside a café having lunch, when Mrs Selitzky walked past. Her demeanor was like ice. She confronted me:
“Are you still sick?”
It was a challenge as sure as if she had slapped me across the face with a white glove.
“Yes,” I said between mouthfuls of a chicken and avocado panini. I didn’t feel bad. I hadn’t lied, I just hadn’t told the whole truth. Alex disagreed with my stance.
“Mrs Selitzky was probably just worried about you.”
Yeah, right. Women can decipher other women’s body language and hers said “I don’t believe you”. Alex and I were on opposite sides again. If he were going through this he would tell everyone. But I would rather endure anger than pity.
I had to quit my daycare job. The infection risk was too high. I wrote a letter to the boss explaining that I wouldn’t be returning to work for medical reasons. The teachers organised a farewell dinner for me. I didn’t want to go. I didn’t want to be quizzed on why I had to leave. What should I tell them? There’s something about the word cancer that strikes a profound fear into everyone and I didn’t want to say it. I shut my eyes and saw a pity party again so I started researching what could make me leave my job but not be quite as serious as cancer. I came up with chronic anaemia. It was treatable and brought on by infection. I articulated the definition by rote like reciting the answer to a biology pop quiz. I offered the analysis over dinner. They appeared satisfied until one teacher said:
“You don’t look anaemic.”
My face flushed red. Did she think I was sicker than I let on, or not as sick?
“I’m on medication, so I’m not very anaemic right now.”
I said my farewells, got my gift voucher and ran out of there. In my car I hit my head against the steering wheel. That poem came back to me: Oh what a tangled web we weave when first we practice to deceive. That night I had a dream about the two lives I was leading. I dreamt that I was working at a new daycare when the staff from my previous daycare saw me through the window. They were shocked to see me working somewhere else.
“What are you doing here?” They asked in unison.
Oh sh--.
In my dream I was unable to explain it to them and they walked away in disgust. They didn’t believe I was sick at all. They thought it was all just a scam to leave my job and go work somewhere else. I couldn’t tell them the truth. But the fact that it had crept into my dreams was a sign that I was agitated about the deception. Was I being ridiculous to cover up what I was really going through? Should I shout it out to the world?
In spite of my apprehension about making social dates I had a strong desire to see everyone one last time. My best friend was Sarah. She called about two weeks after my diagnosis. I loved Sarah and I actually wanted to share this awful thing with her. But I didn’t want her to worry. I was thinking of her life, her young children, all the things she had to deal with already. I went to her house for coffee and I told her the half-truth I concocted for the teachers.
“It’s chronic anemia. My immune system is compromised so I can’t be near sick people or children who have just been vaccinated.”
“I was anemic when I was pregnant with my youngest. Are they giving you iron?”
“Ye-es.”
My heart sank. I didn’t want to lie and I was beginning to doubt that I could keep it up. But it was so wonderful being with her, talking about our kids, laughing and chatting and having a cup of coffee that in the end I did not regret my decision to “lighten” my disease. I would have hated to sit there in her kitchen and have the whole conversation be about my devastating illness. So I relaxed and it was like old times as we sat catching up on gossip. But for some reason she decided to tell me a story about the child of a relative who recently died of cancer at age four. He was diagnosed at age two, and went into remission for two years before the cancer came back with a vengeance. I was thinking that in my research two years seemed to be the average. I told her how sorry I was, which I was, but I was also thinking: I’ve probably got two years too. I didn’t want to talk about cancer, not today. It was a fantastic morning and the only thing that spoiled it, besides the shadow of death hanging over my shoulder was that I had to finish the day by getting my blood taken.
I went to see my American friend, Lily. Not knowing about my disease, Lily gave me a cup of coffee and immediately started telling me about a young actor named Andrew Whitfield from the series Spartacus who died of leukaemia in 2011. I was beginning to think cancer was all anyone ever talked about. Was I giving off some sort of cancer vibe that made everyone tell tragic stories? Obviously I was a little sensitive. But I was glad she could speak freely. If she knew I had leukaemia we wouldn’t have had the same conversation because she wouldn’t want to talk about it in front of me. When I got home I looked up Andrew Whitfield. He died eighteen months after being diagnosed with non-Hodgkin’s lymphoma. It had my heart thumping. He was only 40.
There were other good friends who I considered telling, but I just couldn’t bring myself to do it. These were the Hills. We agreed to go out to dinner with them in early February and I was seriously considering telling Mrs Hill before we went. They were such good friends and trustworthy like the Smiths and I felt disloyal not telling them. I even imagined the scenario of me sitting at dinner and going through the whole story in detail. But as the time got closer I chickened out. I wanted to enjoy my evening, not make it depressing. So we sat and talked and laughed and had a “normal” night. The funny thing was that the Hills were always completely candid about their medical issues. But nothing was as big as the bombshell I was sitting on. Months later, after I lost my hair, they invited us out to dinner again. I decided if they guessed I was wearing a wig I would come clean and tell them the whole truth. If they didn’t, I would continue to keep my illness a secret. Whether they suspected or not they never said anything. It was stressful sitting in the restaurant in that wig. To me it was so obviously false it was as if I had a Halloween mask on my face. But I was determined to be strong. If I told them about my disease it would be like whining about something I had no control over. They would have to feel sorry for me and it would change our relationship forever. I couldn’t do it. I was in a fight for my dignity.
The friends I saw on very rare occasions were easier to fool. Many times it was a phone call and an invitation I could make an excuse to get out of. A friend who visited from England said she wouldn’t be back for a few years. I ticked her off my list of people I wouldn’t have to explain anything to. We had friends for dinner who asked if I had lost weight. That was the only thing they noticed. Another night I had dinner with a couple of old work friends. I forgot about my disease until they talked about future plans. It was crushing because that’s what ultimately separated me from them. I probably didn’t have a future. I decided not to go out to dinner again. I didn’t want to lie anymore and I didn’t want to hear about plans I could not be a part of.
Every few days I thought about just coming clean and telling everyone. But then how exactly was I supposed to burden others with what I was going through? When was I supposed to introduce it into the conversation?
“How are you? Your children are great and your life is full? That’s amazing. Me? Not much. Oh well yes, there is this one new thing. I’m dying of leukemia.”
Alex and I watched a new season of the TV show The Big C. The main actor, Laura Linney, who played Cathy was exceptional. In the show she was a teacher who got cancer. Her students found out and had a cupcake fundraiser for her. The cupcakes had a letter “C” on them which was for Cathy but looked like they were for Cancer. The look of pity on their faces said it all. It’s why she didn’t want them to know. It was exactly what I was going through.
Of course the medical profession I had been dealing with on a weekly basis all knew. It was printed as plain as day on every piece of paper they produced. “Plasma Cell Leukaemia” was everywhere you looked. But there was another professional I had to tell. Before my stem cell transplant I had to get an okay from the dentist. I was supposed to ask him if there was anything in my mouth that could increase my chances of developing an infection. One day in April I rehearsed these lines at home, in the car and on the walk to the dentist. I wanted to get it right and I wanted to get used to hearing the words so I wouldn’t get emotional. When I sat in the dentist’s chair I said the lines perfectly. I didn’t know what sort of reaction I’d get but it was purely clinical.
“Why are you having a stem cell transplant?”
“I have leukaemia.” I was proud of my even tone of voice.
“I have a friend with stomach cancer. They might do a stem cell transplant on him as well. How does it work?”
He showed no pity. He just wanted the practicalities of how it was done. I went through it with him. It was actually more conversation than I wanted to have, especially with his hand in my mouth.
“You look after your teeth well. They shouldn’t cause you a problem.”
“Thank you.”
When I left I was glad he was so indifferent to my condition. It made me feel like it wasn’t worth worrying about.
Although it could be awkward for me to keep my friends in the dark, I didn’t regret the decision which allowed my relationships to continue on their accustomed path. I had a work colleague more than twenty years ago named Paula, who got sick. We had only just moved to our neighborhood and didn’t know anyone. Alex brought home two spare tickets to a sporting event so I called Paula to invite her and her partner. She told me over the phone that she couldn’t go because she just found out she had cancer. I can’t remember what type of cancer now. She wasn’t a close friend or confidante. In fact I didn’t really like her all that much. For the next few weeks I debated about what to do. I didn’t know if I should call or visit, or what I should do or say. Was it expected that I would change my relationship with her from casual acquaintance to attentive nursemaid because by chance I found out she was dying? The truth was I was afraid to see her. So I avoided it. I had a brand new baby so I used that as an excuse. I didn’t go to her house and I didn’t call. A few months later she was dead. Then of course I regretted not going to see her. I beat myself up about it. Couldn’t I have spared just one evening? On the way to her funeral I wrote her widowed partner a letter explaining why I hadn’t had the time to visit. I cried not because I’d miss her, but because I felt so damn guilty. I didn’t want to put anyone in my life through that. My casual acquaintances would be able to come to my funeral (or not) and honestly say:
“I never went to see her because I didn’t know.”
It seemed that none of my friends or acquaintances was suspicious that I was hiding the biggest secret of my life and I was glad of that. I felt that I had burdened enough people with the truth– my family overseas and my family in New Zealand, Alex’s co-workers and our friends the Smiths. One day Charlotte said:
“I understand why you don’t want to tell anyone. Whenever I’m at the Smiths they want to know how you are. It’s all they talk about.”
Although deception is a bumpy path it was the right one for me. I was not the type who required a support group to unload on, a website dedicated to my unfortunate circumstances or a cupcake with the letter “C” on it. I didn’t want to be the person everyone talked about. Instead I had my family if I wanted to talk about it and I had my friends to help me forget about it if only for an hour or two. It was a good combination.
Ignorance is bliss and it was easy to fool everyone while I looked “normal”. Two weeks after my first high dose chemotherapy on May 7th 2012, my head looked like a comical comb-over. Two weeks after the second high dose of chemotherapy in July, my head was a cue ball except for a couple of determined strands. I didn’t know how I was going to maintain any semblance of normality with no hair. So I retreated. My socialising went down to zero. I didn’t call anyone and I didn’t arrange anything. I never initiated contact. It didn’t bother me. I preferred not having any obligations or having to make any excuses. It was my disease, and it was enough of a weight around my neck without the added burden of how it affected others.
There was another reason to lay low beside the fact that I looked the part of a dying woman. To be honest, when you think you are about to breathe your last, everyday conversation has limited interest. While I looked the part of a healthy woman I enjoyed taking part in chats about family, children, pets, jobs, even the weather. But when I looked in the mirror and saw this strange woman looking back at me, I walked through a door exiting my previous life. I no longer gave a sh-- about the weather, the latest iPhone or Angelina Jolie. Listening to complaints about unappreciative family members or difficult salespeople made me want to scream. It’s a cliché, but when you have your health you have everything, including the ability to listen to banal conversation. So it was better that I hid away. I had nothing good to say.
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Marie Black
Re: My blood cancer log
Hi Marie, That is a beautifully told story, although I am really sorry that you have multiple myeloma too! How is everything going now? I hope that your treatments are working for you and that you are recovering from all of the treatments you have had.
it's jsut a life changing event, having cancer, no two ways around that! I don't mind sharing info with my friends and family, but also appreciate being in a support group locally, where I have met other patients and their caregivers. I got into a lot of myeloma-related volunteering that way. And the Beacon is a great online resource for sharing too, and learning about the latest research. Take good care of yourself!
it's jsut a life changing event, having cancer, no two ways around that! I don't mind sharing info with my friends and family, but also appreciate being in a support group locally, where I have met other patients and their caregivers. I got into a lot of myeloma-related volunteering that way. And the Beacon is a great online resource for sharing too, and learning about the latest research. Take good care of yourself!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: My blood cancer log
Thanks for all the support everyone! The one thing that has kept me going is sitting at my laptop and writing about this awful thing that is happening to my body. Finding out that I've touched people with my writing is amazing and heart-warming. I wish everyone luck and joy in whatever they are doing in life. xxx Marie-
Marie Black
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