How to Be Supportive and Still Be Realistic

Mathew spent a lot of time trying to be positive and prayerful. And I am realizing this as I go through his journal, and I remind you that I have not read ahead. As I read, I write. I am realizing the emotional pain he must have felt feeling as if his body had betrayed him and he wasn’t positive enough or spiritual enough to overcome.

This is one of the problems I see and couldn’t explain to people as Mathew went through this cancer. Yes, there can be miracles and yes being positive will help. It will help with making the most of your days. But sometimes it’s impossible to be positive. To be positive when you are in so much pain you can’t think straight. To know you are in a losing battle. Because not all cancers are the same.

So people, in the goodness of their hearts, would say things such as I’m praying for you Mathew. You will get through this. My Mother, Grandmother, brother etc had cancer and is fine now.

The problem with this attitude is that people would pause for a moment and say this to Mathew or to me to any of those who loved him so much and were in pain and fear, and they would say this and go on with their lives.

I tried to explain to some, that no, Mathew’s prognosis is miserable. He does need a miracle and instead of placating us, and moving on, take some time out of your lives and spend some time with Mathew.

One of Mathew’s dear friends thought he would ‘catch up with him later’ when he wasn’t able to keep a date to come to visit. Mathew even offered to pay for his gas, (it was only 30 miles away), but he couldn’t make the time. This same friend texted me and said he would get together with Mat later. I replied, there will not be a later.

Everyone thought I was being hysterical. No, I was being realistic.

Later came for this friend when Mathew was in hospice and couldn’t speak. Couldn’t reminisce or have a laugh with this lifelong friend.

Another friend told me later that she didn’t come visit Mathew because she didn’t want to see him like that and thought she would be able to see him after he got better. Instead, she and I reminisced while we sat on Mathew’s memorial bench.

Mathew needed that time with people he cared about. He had little joy in his life that last year. A few friends came and spent some time. Sometimes they spent too much time and didn’t realize how sick and in pain he was, and that he wasn’t up to much. But afterward, he was always so happy they bothered.

And the other part of all of this is when people would say they knew someone with cancer and now they are fine. Or compare one cancer to another. Not all cancers are the same.

For example, lymphoma is one of the most curable cancers. That’s one of the reasons (I believe) that when they give treatments for other cancers or conditions and lymphoma is a possible side effect, they are good with that because the doctors know they will treat it when it comes along. If soft tissue sarcoma was a possible side effect, it would be a different story.

Some comparisons are like this:

My cousin jumped off the roof of our house and he’s fine now.

compared to

Mathew jumped off a 30 story building.

All the prayers and positivity isn’t going to negate the effects of that fall.

These attitudes and misconceptions left us very alone.

Hair Loss After Chemo for Sarcoma, My Son's Point of View

I can't imagine or pretend to know how it feels to lose your hair because you have cancer and the chemo causes your hair to fall out. I only know what I saw with Mathew and years ago, my sister Elizabeth's experience as they lost their hair to chemotherapy. But it was something that affected Mathew more than just the initial hair loss, it had nuances. Here is a journal entry. It's short but I think it speaks volumes. MATHEW’S JOURNAL 5-23-14 Lately, I’ve been envious of people’s hair. Well, I guess not envious of other people’s hair but missing mine. I told my Mom about it and expressed to her that I was afraid I was falling prey to vanity. She expressed the idea that I may be missing having hair because it’s part of being healthy. I do miss having a life and at the same time, I’m afraid that I may never have a full life again or that I may lose what’s left of the one I have. - I’ve been thinking about dying a lot lately. I don’t know why it has hit

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Bells ring. Bells, chime, toll, peal, resonate and resound. Bells foretell, warn and celebrate. The Chemo Bell The Survivor Bell Cancer Centers have one or several large bells, each with a large clapper. They are mounted on the wall and when a patient receives their last chemotherapy or radiation treatment for cancer they ring that bell. Mathew and I heard the Chemo Bell in the Infusion Center at Moffitt ring one time. Early on our journey. Everyone clapped and cheered. Mat and I stopped and looked at the bell that day and I thought at that time, it was a possibility for Mathew. Bells have a vibration. When a chemo bell rings, when a person survives cancer (even if it’s for a short time) they resound for the rest of us. Their survival reverberates and gives the rest of us hope. I found another chemo bell on the 5th floor at Moffitt, in the hallway, past the patient rooms. Next to the chemo bell was a copy of a photo of a patient surrounded by loved ones

Replace the 3 Lumen Pic Line with a Port

Mathew's 3 Lumen Pic Line was replaced with a Power P.A.C. Both Mathew and I were given Medical I.D. cards to carry at all times. I have mentioned before that texting from the DRC is almost impossible. The staff told me it used to be the X-ray department so the walls are leaded. Again, the phone tree would have helped so much. I texted the following information to my niece, my sister and Mathew’s Dad and Stepmom. And probably Joseph and Carlos. I know that could have been reduced to two texts, three at the most. At the time I didn’t know about group messaging as my phone was an old Android. Texts Between me and Diane Hi. We are at the hospital early because Mat is in a lot of pain. We think the bill stent may have moved. Sent 3-31-14 Because he was NPO for other procedure they should be able to fix today. Sent 3-31-14 In the DRC sending texts is almost impossible so if you don’t hear from me for a while don’t worry. If any big pr

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