It's being the care giver that's the really tough job. And I should know, being both.
When I was first diagnosed with NHL, I know my illness played on the sympathies of many people, none of it intentional on my part. Initially I didn't tell many people about my illness, because I didn't want their perception of me to change. Sure I had to tell my boss and some of my co-workers, because I needed a lot of time off work, but to make my illness widely known, I thought would be a bad thing.
But as time went on, and others whom I did not inform some how found out, I didn't notice any of the overt changes in attitude I had expected. And any changes that did occur, worked to my advantage, for which I was a willing participant. Now don't tell anyone this, but as time went on, I even learned how to orchestrate sympathy to garner some benefit. After all, I'm sick, and while I really don't need sympathy, if I can garner some benefit from it, why not? It was easy! It still is! :)
But now that my wife is sick, I see things in a whole new light. It not "all about me" any more, and what is so hard, is essentially being helpless to do anything, yet feeliing the need to do something. It's ironic also in that here I am, diagnosed with NHL over 4 years ago, feeling fine, and not requiring any treatment, while my wife gets diagnosed with plasmacytoma two weeks ago, has some back pain and requires immediate treatment. So I do whatever I can, but it's hard. Certainly a lot harder than being sick.
So what have I learned through all this? I've learned just how important it is to have a good support group of friends and colleagues around you. In general most people will be sympathetic, but it's that strong support group that will make life a lot easier.
I've also learned that there is a lot more credence to an earlier post of mine, and the philosophy to live everyday like it was your last.
When I was first diagnosed with NHL, I know my illness played on the sympathies of many people, none of it intentional on my part. Initially I didn't tell many people about my illness, because I didn't want their perception of me to change. Sure I had to tell my boss and some of my co-workers, because I needed a lot of time off work, but to make my illness widely known, I thought would be a bad thing.
But as time went on, and others whom I did not inform some how found out, I didn't notice any of the overt changes in attitude I had expected. And any changes that did occur, worked to my advantage, for which I was a willing participant. Now don't tell anyone this, but as time went on, I even learned how to orchestrate sympathy to garner some benefit. After all, I'm sick, and while I really don't need sympathy, if I can garner some benefit from it, why not? It was easy! It still is! :)
But now that my wife is sick, I see things in a whole new light. It not "all about me" any more, and what is so hard, is essentially being helpless to do anything, yet feeliing the need to do something. It's ironic also in that here I am, diagnosed with NHL over 4 years ago, feeling fine, and not requiring any treatment, while my wife gets diagnosed with plasmacytoma two weeks ago, has some back pain and requires immediate treatment. So I do whatever I can, but it's hard. Certainly a lot harder than being sick.
So what have I learned through all this? I've learned just how important it is to have a good support group of friends and colleagues around you. In general most people will be sympathetic, but it's that strong support group that will make life a lot easier.
I've also learned that there is a lot more credence to an earlier post of mine, and the philosophy to live everyday like it was your last.
Comments
I am so sorry to hear about your wife's diagnosis of plasmacytoma. Gosh do I understand how difficult it is to be in the other person's shoes. I can't agree more that being the one with a difficult medical condition is much easier than having the problem yourself because I went thru a similar situation myself. About the time I noticed a lump under both arms while we were wintering down in AZ, my husband had a strange experience. While removing his golf clubs from the trunk he felt like an elephant was standing on his chest and found himself on the ground. After gathering himself he made it out to golf but quit after nine holes. We assumed he had pulled a muscle in his chest or since the feeling persisted he had some kind of chest infection. Of course we both waited until we returned home. I was first diagnosed with CLL which took a few stressful weeks of retesting and seeing a specialist so all attention was turned toward me.
After a few weeks of working thru the anxiety, shock and disbelief of my diagnosis, my husband started the process of finding out what was going on with him resulting in a few more stressful weeks of testing for him. Of course he was diagnosed with diabetes, started on meds and referred to a cardiologist who eventually performed a heart cauterization. As optimistic as I was I just assumed that after the procedure, that the doc would say he needed some other meds. But when the doc came out he said my husband had a couple of 100% blockages in the arteries of his heart and several others that could not be fixed with stints. The doc recommended he stay in the hospital and have surgery the next day. I was in shock but knew I needed a second opinion so I took him out of the hospital grabbed a CD of the procedure and contacted our PCP requesting a referral to a hospital in a bigger city which did significantly more heart surgeries. During the next few days while I was scrambling to find a new doc and surgeon and during my husband's heart surgery in another city I was definitely more stressed out than anytime in my entire life including when I was diagnosed.
It is way more difficult to stand by and watch someone you love suffer and feel helpless to do anything about it. When we have an illness we know what is going on with us. When our loved one is dealing with a disease we wonder and worry. I can say Mark that I have been there done that!
I wish you both the best and hope your wife sails thru treatment with flying colors.
Marianne
I guess I have my work cut out for me figuring out what to do next. I've already joined the ACOR Multiple Myeloma list, so I've got a lot of reading to do.
I am absolutely sure it is harder being the caregiver because you just feel so helpless. You want to trade places, but can't.
If they found it in the bone marrow, does this mean it is classified as soft tissue plasmacytoma? When you first reported this, I Googled it to see what I could learn, but I didn't understand a lot, just like when I was first diagnosed with CLL.
Well, words really are inadequate in a situation like this. Just know that many people care and I am praying for her and for you.