Selfish post – Pity Party

Laurie,

Far too many people on this board can relate to exactly how you feel.  It's so easy to be strong one day and then full of fear/anger the next. This cancer can be controlling at times because as much as we try to deny it, it has our life in it's hands.

It's okay to have a little pity party once and while. I know your fear – especially being the mother of a 21 month old daughter who also needs me. Becoming Stage 4 in April made me really scared that I would go before my daughter ever knew who I was. In the beginning I was terrified – but now I'm just really angry at the last 6 months of my life and I'm done with this controlling me.  I try to bask away in my little world called "denial". 🙂

Laurie, you know you'll always have weak days and strong days and today is a weak one. Let today be a bad day and promise yourself tomorrow you'll have a better day.  Your children had a rough year last year, but it's a better one now – so embrace each day.  There's been alot of sadness and bad news on this board and at times it's hard to deal with.

Lisa

Laurie,

Far too many people on this board can relate to exactly how you feel.  It's so easy to be strong one day and then full of fear/anger the next. This cancer can be controlling at times because as much as we try to deny it, it has our life in it's hands.

It's okay to have a little pity party once and while. I know your fear – especially being the mother of a 21 month old daughter who also needs me. Becoming Stage 4 in April made me really scared that I would go before my daughter ever knew who I was. In the beginning I was terrified – but now I'm just really angry at the last 6 months of my life and I'm done with this controlling me.  I try to bask away in my little world called "denial". 🙂

Laurie, you know you'll always have weak days and strong days and today is a weak one. Let today be a bad day and promise yourself tomorrow you'll have a better day.  Your children had a rough year last year, but it's a better one now – so embrace each day.  There's been alot of sadness and bad news on this board and at times it's hard to deal with.

Lisa

Hi Laurie,

I know what you mean about Eric and so many others here as your comments remind me of myself three years ago when I was first diagnosed and I found this forum. It was about the same time that James from Sydney lost his son. Being newly diagnosed, I havd many thoughts. I also found myself thinking the same you did, why does one have to deal with hospice, while someone else is NED?

You are right, the beast does not discriminate. It does as it chooses. And you are right, it isn't fair.

During these last three years, I have found that to help keep my own sanity, I have to compartmentalize, deal with what I need to, and help who I can along the way.

You can too.

Michael

P.S. Please do not let ANY DERM freeze off anything that is suspected of being melanoma!

Hi Laurie,

I know what you mean about Eric and so many others here as your comments remind me of myself three years ago when I was first diagnosed and I found this forum. It was about the same time that James from Sydney lost his son. Being newly diagnosed, I havd many thoughts. I also found myself thinking the same you did, why does one have to deal with hospice, while someone else is NED?

You are right, the beast does not discriminate. It does as it chooses. And you are right, it isn't fair.

During these last three years, I have found that to help keep my own sanity, I have to compartmentalize, deal with what I need to, and help who I can along the way.

You can too.

Michael

P.S. Please do not let ANY DERM freeze off anything that is suspected of being melanoma!

I haven't shared too much with this board lately, other than the bare bones of treatment results. Today, I'm stepping out on a limb because I am- what I write is in no way a comparison but hopefully you'll see a bit of empathy in there for how you're feeling.

Emotional exhaustion- I hear you. I hear you so friggin' bad. I went on a trial, not with hopes of cure or even a long term response, but because I needed a break, to get back my energy levels. It doesn't look like it's even given me that. For the first 3.5 months of it, I was in excruciating pain with a side effect from the drug, and chronic pain wears you down. For the past 1.5 months, I've been noticing sub-q's popping up and I'm really pissed off that I didn't get that break I'd so desperately hoped for. Mel IS exhausting.

Today I'm getting on a flight to have my scans (MRI/CT) and anxiety? It's there. What if I have no options left for treatment? And is this the beginning of the end for my time with my girl? (Who has recently began lying in the playground at school, and being still, because she want to get some idea of how it will feel for Mummy when she dies… and just thinking about the times her and Mum have spend together. (Not so au fait with the "wanting to know how it will feel for Mum to be dead, but considerably heartened that she is already developing a coping mechanism if the unthinkable happens- just taking the time to lay and think about Mum, in order to remain close to her. Hard to deal with, for sure)  My point to telling you this, is to let you know that with help, either from us as parents, or from counsellors, they do adapt to their life, because it becomes their reality and their own personal "normal". Apart from this little oddity, she is otherwise the same as other kids- her teachers even said they tend to forget that she has all these things to deal with, because she is well adapted and does not manifest any outwardly noticeable displays. (They just thought she was playing a game when she started doing that, just like other kids do) Ultimately, though I often feel guilty for what she's had to endure for 3 years now, it is Not. My. Fault. Nor is it yours. We know who to blame.

I've never done an official "watch and wait", but I've done an very unoffficial one. Wait for the symptoms to appear, then get them cut out. I think even most NED patients are doing their own version of watch and wait… We all watch and wait for symptoms to appear, so don't feel alone- you aren't doing nothing- you're being vigilent.

As for the "not being grateful for the here and now", I can assure you that I don't feel grateful for the here and now every day, simply because I'm alive, and the expectation that I possibly should be, is bunkum. I may love every day I get to be with my daughter, but there are a lot of things through the course of the day that I'm not grateful for. It's just the price I pay for the thing that matters most- Georgia. not something I have to be grateful for. My personal take on that it's more of a "well, it could be worse". That's what gets me through. I try very hard not to  make mel the centre of my thoughts every day, and if I'm not feeling symptomatic, I manage that- though usually by the skin of my teeth. And it's only pure anger that get's me there- just a refusal to let a crappy disease ruin my time on this earth.

It's a rollercoaster that none of us should have to be on. But it's there and we're strapped in for the ride. But it's a strange rollercoaster in that some things are outside our contol, yet some thing aren't. The things that are outside my control are usually the "down ward" sweep, so sometimes I have to make a concentrated effort to make it a more level, or even upward direction. And that takes some energy… but it gets hard when the energy is depleted from dealing with the downward directions. I find I have to make a concerted effort to move mel off to the side, except when it forces me to deal with it.

I'm sorry the only experience I can draw from is a perspective like this, but I've only ever been stage 4 and in active treatment. My response is intended to just let you know that you aren't alone in your fears and feeling, and not to downplay or suggest a game of "one-upmanship". Fear and feelings aren't quantitative- Fears and feelings are valid and there isn't a yardstick to measure it with.

Maybe some meditation/yoga or something like that will assist you to get your energy levels back up? But emotional energy can be a tough one to get back to where one needs them to be- even with all the good intentions in the world of the person with the problem.

Hoping you feel more on top of things soon!

I haven't shared too much with this board lately, other than the bare bones of treatment results. Today, I'm stepping out on a limb because I am- what I write is in no way a comparison but hopefully you'll see a bit of empathy in there for how you're feeling.

Emotional exhaustion- I hear you. I hear you so friggin' bad. I went on a trial, not with hopes of cure or even a long term response, but because I needed a break, to get back my energy levels. It doesn't look like it's even given me that. For the first 3.5 months of it, I was in excruciating pain with a side effect from the drug, and chronic pain wears you down. For the past 1.5 months, I've been noticing sub-q's popping up and I'm really pissed off that I didn't get that break I'd so desperately hoped for. Mel IS exhausting.

Today I'm getting on a flight to have my scans (MRI/CT) and anxiety? It's there. What if I have no options left for treatment? And is this the beginning of the end for my time with my girl? (Who has recently began lying in the playground at school, and being still, because she want to get some idea of how it will feel for Mummy when she dies… and just thinking about the times her and Mum have spend together. (Not so au fait with the "wanting to know how it will feel for Mum to be dead, but considerably heartened that she is already developing a coping mechanism if the unthinkable happens- just taking the time to lay and think about Mum, in order to remain close to her. Hard to deal with, for sure)  My point to telling you this, is to let you know that with help, either from us as parents, or from counsellors, they do adapt to their life, because it becomes their reality and their own personal "normal". Apart from this little oddity, she is otherwise the same as other kids- her teachers even said they tend to forget that she has all these things to deal with, because she is well adapted and does not manifest any outwardly noticeable displays. (They just thought she was playing a game when she started doing that, just like other kids do) Ultimately, though I often feel guilty for what she's had to endure for 3 years now, it is Not. My. Fault. Nor is it yours. We know who to blame.

I've never done an official "watch and wait", but I've done an very unoffficial one. Wait for the symptoms to appear, then get them cut out. I think even most NED patients are doing their own version of watch and wait… We all watch and wait for symptoms to appear, so don't feel alone- you aren't doing nothing- you're being vigilent.

As for the "not being grateful for the here and now", I can assure you that I don't feel grateful for the here and now every day, simply because I'm alive, and the expectation that I possibly should be, is bunkum. I may love every day I get to be with my daughter, but there are a lot of things through the course of the day that I'm not grateful for. It's just the price I pay for the thing that matters most- Georgia. not something I have to be grateful for. My personal take on that it's more of a "well, it could be worse". That's what gets me through. I try very hard not to  make mel the centre of my thoughts every day, and if I'm not feeling symptomatic, I manage that- though usually by the skin of my teeth. And it's only pure anger that get's me there- just a refusal to let a crappy disease ruin my time on this earth.

It's a rollercoaster that none of us should have to be on. But it's there and we're strapped in for the ride. But it's a strange rollercoaster in that some things are outside our contol, yet some thing aren't. The things that are outside my control are usually the "down ward" sweep, so sometimes I have to make a concentrated effort to make it a more level, or even upward direction. And that takes some energy… but it gets hard when the energy is depleted from dealing with the downward directions. I find I have to make a concerted effort to move mel off to the side, except when it forces me to deal with it.

I'm sorry the only experience I can draw from is a perspective like this, but I've only ever been stage 4 and in active treatment. My response is intended to just let you know that you aren't alone in your fears and feeling, and not to downplay or suggest a game of "one-upmanship". Fear and feelings aren't quantitative- Fears and feelings are valid and there isn't a yardstick to measure it with.

Maybe some meditation/yoga or something like that will assist you to get your energy levels back up? But emotional energy can be a tough one to get back to where one needs them to be- even with all the good intentions in the world of the person with the problem.

Hoping you feel more on top of things soon!

I have had one of those days todays, and am so thankful for the above posts.  You're "conquer the world one day and wonder if I'll be able to conquer the next" hit home.  I'm not the patient, but the caregiver.   Although I have a say in treatment suggestions, it is not my decision.  And I cannot fix what is broken in the most important person in my life.  Emotional exhaustion?  I hear you.  And it pisses me off.

Just wanted to let you know – you're not alone.  Mel sucks.  No two ways about it.

Maria

I have had one of those days todays, and am so thankful for the above posts.  You're "conquer the world one day and wonder if I'll be able to conquer the next" hit home.  I'm not the patient, but the caregiver.   Although I have a say in treatment suggestions, it is not my decision.  And I cannot fix what is broken in the most important person in my life.  Emotional exhaustion?  I hear you.  And it pisses me off.

Just wanted to let you know – you're not alone.  Mel sucks.  No two ways about it.

Maria

I'm very sorry you had such battle with mel last year, Laurie. I'm glad you're NED now. I pray you stay that way. I don't think you're being selfish. 

Best regards, Steve

I'm very sorry you had such battle with mel last year, Laurie. I'm glad you're NED now. I pray you stay that way. I don't think you're being selfish. 

Best regards, Steve

Hi Laurie.

It certainly isn't fair.

I'm stage 3 and doing well but I have relied a lot on my therapist to help me deal with my thoughts, etc. If you can find and afford a good therapist, it may well be money well spent. I can only tell you that mine is.

Best Wishes for a long life.

Hi Laurie.

It certainly isn't fair.

I'm stage 3 and doing well but I have relied a lot on my therapist to help me deal with my thoughts, etc. If you can find and afford a good therapist, it may well be money well spent. I can only tell you that mine is.

Best Wishes for a long life.