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Life With Lupus

I would rather have cancer


#1

I was on facebook, and saw a post from a man whose wife had just been given the all clear from her oncologist. She had been diagnosed with cancer in Aug 2015. Five months ago.

My first thought was "wow - I wish I had cancer instead of Lupus!"


#2

You know. . .as odd as it may sound. I actually said something similar to my doctor once when I was hospitalized. With lupus I take methotrexate injections weekly and have to take chemotherapy. And these treatments and side affects will be "routine" for me for the rest of my life with the added risk of getting cancer from the meds.

Unlike a person who battles cancer. They fight and fight hard and depending on the circumstance there's a good chance they will never see that again. With lupus, it's an invisible fight with very little support like you see with women who have say breast cancer.


#3

I know exactly what you mean. I'm Seenie, from Moderator Support and I usually work behind the scenes at Ben's Friends. I don't have lupus, rather I suffer from severe psoriatic disease. This thread, though, really resonated with me, and I want to chime in.

I don't think you are minimizing the horror of having cancer: you know what suffering is if you have lupus. Cancer is life threatening. Lupus is lifestyle threatening.

Last year, a good friend of mine found a breast lump, endured several rounds of nasty invasive testing, and ended up having a lumpectomy and radiation treatments. It was cancer, and I was very worried for her. I hated seeing her go through what she did. But as our large circle of friends rallied round, sent cards and flowers, and fluttered and fussed and organized deliveries of meals, I was, in my heart, hurt. Really hurt. Cry myself to sleep hurt. I've had three joint replacements, foot damage that makes standing for more than five minutes impossible, and literally decades of pain and fatigue. People are nice to me, but I've never been on the receiving end of support as lavish as she got. And while my friend needs to be monitored for several more years, her doctor has told her that she can, essentially, consider herself cured. I'm not proud of it, but I'll admit to the "I wish I had cancer instead" thought crossing my mind.

While her cancer battle is probably over, my daily battle with pain, fatigue and disability will continue until the day I die. I just hope that my disease can be contained so that it does not steal too much more than it already has stolen from me. And in my very darkest moments, I've even thought "If I got cancer, I'd either go through some nasty treatment, be cured and be over it, or I'd lose the battle and die." And to be honest, there have been days when losing the battle and dying has had more appeal for me than continuing to live with my disease.

Does having had these thoughts make us bad people? I don't think so. It means that we are human. I also like to think that my suffering has made me more sensitive to others who suffer pain and disability, whether from a chronic condition, old age, or from acute disease. And that, my friends, has to be a very good thing.


#4

You get it!

My mother died from cancer, and I certainly do not want to go through what she went through those last few months.

It's not that having cancer isn't an awful thing, it's the thought that you can go through treatment and be cured in five months. Lupus is forever. There is no cure. No end.

I get very discouraged sometimes because just when I'm feeling "normal" again, I come crashing down and all my immediate plans go down the drain. Friends and Family just think I'm lazy or flakey because I try to downplay my symptoms. It's like there is a finite amount of sympathy available for Lupus patients, and I feel like I have to save it up for when I really need it.

There doesn't seem to be the same limitations for cancer patients. Even if they are cured, they get that sympathy for the rest of their lives - no matter what happens, they are forgiven because they beat cancer...


#5

Yes, we get it. Do we ever. :-)


#6

I can understand, Idio. Chronic illness such as Lupus, PSA or Fibro isn’t associated with finality from the start. Cancer is often tied to finality throughout the course of disease even at its’ earliest stage with high survival rates. It’s assumed with chronic illness that you’re alive, coping with and managing your disease, and you don’t have the “nearby” threat of death hanging over you-- there’s hope for you because in presumed and imminent death there’s only finality. The entire content of longstanding suffering and struggle and pain of chronic illness gets lost. I think at least some component of Cancer as an illness drawing more understanding can be explained by a general fear of death that many people have and the safety that being alive carries.


#7

A limited amount of sympathy, yes. I think it’s a combination of things: we look great! Sometimes we are in remission and we feel better and act better; when we feel awful, we hide it well. Plus our loved ones see us as either well or temporarily sick.
Before I was diagnosed, I remember wishing I could have a name for what was wrong and it did help. No one tries to fix me now.


#8

I watched a movie the other day about a woman with Alzheimers, called "Still Alice", and I was struck by how much parts of her struggle resonated with me. In one scene, she actuallys tells her husband "I wish I had cancer" - and gives the same reasons listed in this thread!


#9

Seenie, I re-read your post today and I wish I could give you a hug!



ModSupport said:

I know exactly what you mean. I'm Seenie, from Moderator Support and I usually work behind the scenes at Ben's Friends. I don't have lupus, rather I suffer from severe psoriatic disease. This thread, though, really resonated with me, and I want to chime in.

I don't think you are minimizing the horror of having cancer: you know what suffering is if you have lupus. Cancer is life threatening. Lupus is lifestyle threatening.

Last year, a good friend of mine found a breast lump, endured several rounds of nasty invasive testing, and ended up having a lumpectomy and radiation treatments. It was cancer, and I was very worried for her. I hated seeing her go through what she did. But as our large circle of friends rallied round, sent cards and flowers, and fluttered and fussed and organized deliveries of meals, I was, in my heart, hurt. Really hurt. Cry myself to sleep hurt. I've had three joint replacements, foot damage that makes standing for more than five minutes impossible, and literally decades of pain and fatigue. People are nice to me, but I've never been on the receiving end of support as lavish as she got. And while my friend needs to be monitored for several more years, her doctor has told her that she can, essentially, consider herself cured. I'm not proud of it, but I'll admit to the "I wish I had cancer instead" thought crossing my mind.

While her cancer battle is probably over, my daily battle with pain, fatigue and disability will continue until the day I die. I just hope that my disease can be contained so that it does not steal too much more than it already has stolen from me. And in my very darkest moments, I've even thought "If I got cancer, I'd either go through some nasty treatment, be cured and be over it, or I'd lose the battle and die." And to be honest, there have been days when losing the battle and dying has had more appeal for me than continuing to live with my disease.

Does having had these thoughts make us bad people? I don't think so. It means that we are human. I also like to think that my suffering has made me more sensitive to others who suffer pain and disability, whether from a chronic condition, old age, or from acute disease. And that, my friends, has to be a very good thing.


#10

And I’d give you a big warm hug too. How are you these days?
Seenie


#11

Hi Seenie:

I’m doing okay :slight_smile: Not as discouraged as I was when I wrote that post.
I’m trying to learn how to take care of myself instead of waiting for other
people to do it (since that is unlikely to happen). Started Yoga again,
reading lots of books on Zen, making new friends, and being more proactive
with the medical stuff. Have you heard of Low Dose Naltrexone?

How are you doing?

Love,

Dawn


#12

Oh, that’s so nice to hear, Idioskosmos
I’m taking care of myself too: swimming, exercising. If I could stand on my feet, I’d be taking yoga too – always loved it, but chair yoga doesn’t sound the same to me.
Have you read “How to be Sick”? I got a lot from that one.
LDN: yes, it comes up from time to time, but there really isn’t a lot of solid evidence that it does much good, except to make the people prescribing it wealthy.
Keep on looking after yourself, and have a great weekend.
Seenie


#13

I too have found my self thinking the same thing. With cancer there is suffering yes and it is horrible to witness anyone going through the turmoil of cancer. I have sat many times with many of my family members who have been through Chemo and Radiation.

However, there is hope for them. They have a fighting chance to have a cure, to feel better in the long run. They have hope of one day being back to “normal”. I will never have that, I will never be back to myself again. People see others with cancer and see they are sick and sympathize. We/I do not get the same even with the pain and fatigue and nausea and hair loss and everything else that comes with this because " you don’t look sick".

If you are not visibly ill, and visibly fighting your disease people assume things are not as bad as they are. People will assume you are just making things up to get out of doing something. People will think and say many nasty things even though you are suffering because you do not look sick.

I do not feel these thoughts make us “bad people”. I think it makes us appreciate what we can do. I think it makes us more compassionate to others who are suffering. I think it makes us stronger as individuals because it is a daily battle.


#14

The misconception that people with cancer are far more fortunate than those with lupus is very sad. I have been fighting cancer since 2002 and rediagnosed in 2010. The chemo given kills every cell and makes daily life a living hell with constant pain and the inability to think straight or carry on a conversation when once having an iq of 140. Now my daughter’s recent bloodwork shows she will be living a life quite similar to mine. It appears she has lupus. I was hoping to find a support group that would encourage, lift up and share knowledge without feeling the need to put another disease as the disease to have because no one could possibly be as bad off.
I feel I may have chosen the wrong support group. My daughter is 16 and we are both determined to stay above the disease that has ensnared us. She has watched me suffer for 14 years of her 16 year life because death is not an option. PLEASE, do not assume your pain and suffering is any greater than another’s with cancer or any other disease.
When I found this support group I was relieved to know I was going to find help, knowledge and understanding to better help my daughter but unfortunately I saw your post first and once again feel lost in a world of self pity and misunderstanding. Everyone has a battle to fight and no one is in a position to say how worse off they are than another. I pray you will find relief and a place in your heart where you can feel for others as much as you do yourself.


#15

Hi
That’s funny because I thought the same when a friends husband just got the “all clear” from cancer. Some (without Lupus) would think we ae pretty strange.

Take care.
Cindy


#16

I’m sorry. I guess I should explain. No one thinks cancer patients have it easy. I just mean. sometimes you can be cured of cancer and there is no cure for Lupus. I have heard of several patients lately being cured of cancer, my husband is one of them. There is no cure for us.
Cindy


#17

I am thankful your husband is cured. Many cancer patients are in remission, not cured, being in remission because of ongoing treatment. Thank you for understanding where I have been for the past 14 years. Many cancer patients are scarred for life. Our bodies are altered, disfigured, some more drastically than others. I apologize if I came across harsh. I was just desperately seeking answers for my daughter when I came across your post and the one that said ‘I would rather have cancer’. Seeing that not only made me feel more lost for my daughter but in complete disbelief that anyone would make such a statement. I decided, after seeing these comments, that I was probably not in the most understanding forum. One statement that comes to mind after reading the comments is “unless you have walked in another’s shoes”. A diagnosis of any disease is terrifying and being in remission does not mean one is cured. Just as with lupus. All because you are not having a flare up does not mean you are cured. We are fighters and in order to survive you have to stay above whatever hand you have been dealt. It’s great to have a place to come when you are in despair and need to vent but venting and comparing oneself to another’s disease and despair seems counterproductive. I hope and pray you have more good days than bad. I pray that a cure for all disease will be found. Until then I hope and pray that we are able to lift up and encourage one another regardless what our battle may be <3


#18

Veronica
I can’t tell you how sorry I am about my response and the fact that is hurt you. I certainly didn’t mean to be insenitive to your feeling or your daughters cancer. I don’t know what its like to walk in your shoes. I too hope for a cure to everyones diseases. I prefer to think my husband is cured. He has been cancer free for 8 years now. He just survived a cardiac arrest and 8 days later a heart attack. I am not looking for your sympathy just maybe a little understanding. I pray for all the families who have loved ones in any type of issue. Noone knows what we go through.

Cindy


#19

I am not sure I want to maintain a presence on this forum any more. This thread is titled “Emotional Support”. When I made my initial post, I was at a very low place and feeling hopeless. I live in an area where there are no in-person support groups for people with Lupus. I have no family except for my husband and children. I reached out to the only group of people I knew that I thought I could trust with my innermost, dark secrets and fears. People that would understand what I meant when I said “I would rather have cancer”. I didn’t think I was going to have to preface my remarks with a disclaimer. This may no longer be the place for me.


#20

I think we are all feeling helpless and are looking for some type of help or reassurance. I did not mean to make you feel unwanted. My heart goes out to you❤️ It really does❤️ I just feel so overwhelmed with having my daughter having something I have no way of fixing… I was hoping someone in this group would have some kind of reassurance that she would be okay. Maybe someway they knew of that made her bad days better. She watches me slowly deteriorate with the shots I have to have every month to stay in remission and she has always been there for me. My question is how can I be there for her. How can I make her feel better. I am truly and utterly lost💔