Effing cancer is an effing effer, frankly

[Speedracer329]

350zStee said:

Speedracer329 said:

Great news, I had Hodgkin's when I was 30, been clear for 27 years now.

Just noticed your reply today.

Thats fantastic to hear. How has your health been in general since your treatment? Any side effects from the treatment?

This past year has been terrible on my family seeing someone we love deteriorate so quickly losing all their hair/beard. I'm glad its finally over.

Stephen

Hi Stephen, well for me the worst part was my hair falling out, & it has never grown back properly, a few wispy tufts like baby hair that is all, so I shave whatever grows now. It is by no means a certainty to happen though, the radiation treatment was much more aggressive back then.
I got back to normal health pretty quickly actually, I had almost 6 months off work & also had to stop playing football for the same amount of time until I got my strength back. Because my treatment was mainly around my neck I was told it damaged a saliva gland at one side, so I often have a sore throat & dry mouth. It didn't do a lot of good to my skin either, but I am nit picking really & I am gladly living with these rather than not living at all!
So the extended prognosis is really good for your brother, so he should be around for some time to come thank goodness.

Brook.

[SFMXKR]

nunpuncher said:

Not sure if this thread is what I need to be reading or avoiding given the mix of outcomes.

On August 28th my then 3 year old son (had his 4th birthday 2 weeks later) was diagnosed with Acute Lymphocitic Leukaemia. We were discharged from hospital last week after his induction therapy went well. However, we have just been told that he is in the high risk category for reoccurrence so another 11 weeks of intensive chemo will be starting tomorrow.

Initially I thought I was dealing with it well but this latest "fork in the road" (as it was described by one of the doctors) has really knocked me.

Chin up fella and stay positive, after diagnosis and treatment for Hairy Cell Leukaemia I am now 18 months down the line and all clear. The development of treatments are moving forward at an astounding rate. New research into stem cell treatments are moving to clinical trials soon (if not already occurring). Thoughts are with you...

[robm3]

Eight years in the clear this month for me. Had T2a Melanoma (over 1mm) but gladly all is okay now. When I get to ten years I believe I'm officially clear of it.

[blindswelledrat]

nunpuncher said:

Not sure if this thread is what I need to be reading or avoiding given the mix of outcomes.

On August 28th my then 3 year old son (had his 4th birthday 2 weeks later) was diagnosed with Acute Lymphocitic Leukaemia. We were discharged from hospital last week after his induction therapy went well. However, we have just been told that he is in the high risk category for reoccurrence so another 11 weeks of intensive chemo will be starting tomorrow.

Initially I thought I was dealing with it well but this latest "fork in the road" (as it was described by one of the doctors) has really knocked me.

Sympathies. I know exactly how awful what you're going through is and that is far too young, poor little thing.
Fingers crossed everything goes okay.

[ali_kat]

nunpuncher said:

Not sure if this thread is what I need to be reading or avoiding given the mix of outcomes.

On August 28th my then 3 year old son (had his 4th birthday 2 weeks later) was diagnosed with Acute Lymphocitic Leukaemia. We were discharged from hospital last week after his induction therapy went well. However, we have just been told that he is in the high risk category for reoccurrence so another 11 weeks of intensive chemo will be starting tomorrow.

Initially I thought I was dealing with it well but this latest "fork in the road" (as it was described by one of the doctors) has really knocked me.

This is the thread for getting lots of support & well wishes & to just be able to let the thoughts out of your head that you can't say anywhere else IYKWIM

I'm hoping everything works out for your son, he's far too young for this, not at all fair

[Biggles111]

nunpuncher said:

Not sure if this thread is what I need to be reading or avoiding given the mix of outcomes.

On August 28th my then 3 year old son (had his 4th birthday 2 weeks later) was diagnosed with Acute Lymphocitic Leukaemia. We were discharged from hospital last week after his induction therapy went well. However, we have just been told that he is in the high risk category for reoccurrence so another 11 weeks of intensive chemo will be starting tomorrow.

Initially I thought I was dealing with it well but this latest "fork in the road" (as it was described by one of the doctors) has really knocked me.

Take it a step at a time, hard I know, but over time the steps add up and you get through. I was diagnosed with Acute Myeloid Leukaemia in May, finished heavy chemo treatment 3 months later, and so far am clear. The doctors were initially very cautious but as time went by they became much more positive. ALL is different, as is each patient, but the prognosis for kids is often better than adults. Stay off searching on the web as most of the data is out of date, things have progressed massively in the last decade, use the doctors and specialist nurses for any info you need, as they will understand the individual case better than anyone can. Macmillan are also great to talk to on wider issues or as a shoulder to lean on.

Thinking of you and your son.

[Benjy911]

Biggles111 said:

nunpuncher said:

Not sure if this thread is what I need to be reading or avoiding given the mix of outcomes.

On August 28th my then 3 year old son (had his 4th birthday 2 weeks later) was diagnosed with Acute Lymphocitic Leukaemia. We were discharged from hospital last week after his induction therapy went well. However, we have just been told that he is in the high risk category for reoccurrence so another 11 weeks of intensive chemo will be starting tomorrow.

Initially I thought I was dealing with it well but this latest "fork in the road" (as it was described by one of the doctors) has really knocked me.

Take it a step at a time, hard I know, but over time the steps add up and you get through. I was diagnosed with Acute Myeloid Leukaemia in May, finished heavy chemo treatment 3 months later, and so far am clear. The doctors were initially very cautious but as time went by they became much more positive. ALL is different, as is each patient, but the prognosis for kids is often better than adults. Stay off searching on the web as most of the data is out of date, things have progressed massively in the last decade, use the doctors and specialist nurses for any info you need, as they will understand the individual case better than anyone can. Macmillan are also great to talk to on wider issues or as a shoulder to lean on.

Thinking of you and your son.

My sister was diagnosed with Acute Promyelocytic Leukaemia in June last year. It's been a very tough time but the treatment has been effective and she is currently in remission and back at University, or more accurately the pubs and clubs!

She wrote about it all on her blog which I've put a link to as I feel it might help.

http://emilyevaalice.blogspot.co.uk/2014/01/my-can...

Best wishes and I hope it all goes well.

[nunpuncher]

Thank you for the words of support and the positive stories. Benji911, I will definitely give that blog a read. I feel the need to share what I'm going through as I suspect it might help. However, I just have so many thoughts and fears swirling round my head that I can't really sort them into constructive sentences whenever I sit down.

Biggles111, I'm glad you're doing well. We've met many children with AML (or rather the parents as the kids with AML are generally kept in strict isolation). Not sure if it's the same for adults or differs in a similar way to ALL depending on age but from what I heard it's a tough one for kids. I wish you all the very best with continued well being.

[waynedear]

Long story short, January got diagnosed with cancer, 2 lots of surgery later i am in remission from April.
Feel guilty that i got away with it so easily, depression and anxiety and stress all piled into my head, never really got used to having cancer before they sorted me.
The doctor that first spotted it found 2 others same week with the same thing, they are no longer here.
I am.

I have to do things differently now, everything in my world has changed, i am no longer indestructible.

Took me ages to work out my mental state was not as it should be.

Herself has been amazing as have the Mersyside NHS

I am slowly getting there.

So cancer, fk off !!!!!!!!!!!!!!!!!!!!!!

[Dibble]

nunpuncher (great username!), if it helps to write it down, do it. I think this is one of the few threads on PH where no-one gives a shoite about speeling/grammer.

In fact I don't think I've seen a single "negative" post on here. Yes, there are utterly tragic takes, but no one has said anything unpleasant to another poster.

I had so e fairly tough (mental) health issues over the last couple of years and a friend suggested writing it all down. I did, and it WAS cathartic. It didn't solve anything, but it helped me order my thoughts a bit better.

[Dibble]

nunpuncher (great username!), if it helps to write it down, do it. I think this is one of the few threads on PH where no-one gives a shoite about speeling/grammer.

In fact I don't think I've seen a single "negative" post on here. Yes, there are utterly tragic takes, but no one has said anything unpleasant to another poster.

I had so e fairly tough (mental) health issues over the last couple of years and a friend suggested writing it all down. I did, and it WAS cathartic. It didn't solve anything, but it helped me order my thoughts a bit better.

[drivin_me_nuts]

waynedear said:

Long story short, January got diagnosed with cancer, 2 lots of surgery later i am in remission from April.
Feel guilty that i got away with it so easily, depression and anxiety and stress all piled into my head, never really got used to having cancer before they sorted me.
The doctor that first spotted it found 2 others same week with the same thing, they are no longer here.
I am.

I have to do things differently now, everything in my world has changed, i am no longer indestructible.

Took me ages to work out my mental state was not as it should be.

Herself has been amazing as have the Mersyside NHS

I am slowly getting there.

So cancer, fk off !!!!!!!!!!!!!!!!!!!!!!

Don't feel guilty about surviving cancer (though survivor's guilt is actually a very common 'gift' with this disease). Live your life, walk away from the negativity of it all and for every moment that you are alive, happy and laughing, you and the army of those who walk, away stick two fingers up at all it does.

Good for you

[Boshly]

drivin_me_nuts said:

waynedear said:

Long story short, January got diagnosed with cancer, 2 lots of surgery later i am in remission from April.
Feel guilty that i got away with it so easily, depression and anxiety and stress all piled into my head, never really got used to having cancer before they sorted me.
The doctor that first spotted it found 2 others same week with the same thing, they are no longer here.
I am.

I have to do things differently now, everything in my world has changed, i am no longer indestructible.

Took me ages to work out my mental state was not as it should be.

Herself has been amazing as have the Mersyside NHS

I am slowly getting there.

So cancer, fk off !!!!!!!!!!!!!!!!!!!!!!

Don't feel guilty about surviving cancer (though survivor's guilt is actually a very common 'gift' with this disease). Live your life, walk away from the negativity of it all and for every moment that you are alive, happy and laughing, you and the army of those who walk, away stick two fingers up at all it does.

Good for you

I concur but would go furthef to say you also have a gift to share! As have I and others on this thread. And long and wide may it continue.

Let people know that cancer does not always win! It's our duty to spread the word.

The knowledge that's its not the automatic killer it was can help people overcome their fear and go for early diagnosis.

[jbudgie]

Boshly said:

drivin_me_nuts said:

waynedear said:

Long story short, January got diagnosed with cancer, 2 lots of surgery later i am in remission from April.
Feel guilty that i got away with it so easily, depression and anxiety and stress all piled into my head, never really got used to having cancer before they sorted me.
The doctor that first spotted it found 2 others same week with the same thing, they are no longer here.
I am.

I have to do things differently now, everything in my world has changed, i am no longer indestructible.

Took me ages to work out my mental state was not as it should be.

Herself has been amazing as have the Mersyside NHS

I am slowly getting there.

So cancer, fk off !!!!!!!!!!!!!!!!!!!!!!

Don't feel guilty about surviving cancer (though survivor's guilt is actually a very common 'gift' with this disease). Live your life, walk away from the negativity of it all and for every moment that you are alive, happy and laughing, you and the army of those who walk, away stick two fingers up at all it does.

Good for you

I concur but would go furthef to say you also have a gift to share! As have I and others on this thread. And long and wide may it continue.

Let people know that cancer does not always win! It's our duty to spread the word.

The knowledge that's its not the automatic killer it was can help people overcome their fear and go for early diagnosis.

Well said.

[waynedear]

Thank you so much, the story i started to write (the whole thing and experience in great detail) got deleted 2 thirds through.
I will get there slowly.

[WinkleHoff]

My Mum was diagnosed with oesophageal cancer in March 2013. They then discovered a cancer on the lung (unrelated, what are the chances of that?). She endured two gruelling operations to remove it them in July last year. It took the best part of six months before she really came home. She went back to work and has been living a normal energetic life enjoying my little boy and my brothers children. After all that she's been through, she was told this week it has returned. It's utterly soul destroying and cruel. My anger towards this disease knows no bounds right now. I am hoping it can be contained for as long as possible to allow us precious time together.

[drivin_me_nuts]

WinkleHoff said:

My Mum was diagnosed with oesophageal cancer in March 2013. They then discovered a cancer on the lung (unrelated, what are the chances of that?). She endured two gruelling operations to remove it them in July last year. It took the best part of six months before she really came home. She went back to work and has been living a normal energetic life enjoying my little boy and my brothers children. After all that she's been through, she was told this week it has returned. It's utterly soul destroying and cruel. My anger towards this disease knows no bounds right now. I am hoping it can be contained for as long as possible to allow us precious time together.

.. and indeed make it precious. And as hard as this is going to be, try not to let the anger and the frustrations you feel neither diminish nor reduce the precious moments you have. There is nothing to be gained and much to be lost in the negative aspects of what cancer brings.

Do what you need to do every step of the way to let the anger you feel inside diminish to the point where when you are together it is the happiness of being together that is the dominating emotion. Let not the sadness and anger that cancer could bring, stop the occurrence of these good times.

To contain as you describe, allows the well to overflow...

Instead let those feelings go. My lass wrote (because she could not speak), when cancer had done it's very worst, 'it is what it is' and you know, it is one of the most wonderfully liberating things I have ever read. It is what it is and it is now your time to just be you and let the you inside, that does not want to be way cancer could make you be, win over the side that would be rage and fury.

[Pugsey]

jbudgie said:

Boshly said:

drivin_me_nuts said:

waynedear said:

Long story short, January got diagnosed with cancer, 2 lots of surgery later i am in remission from April.
Feel guilty that i got away with it so easily, depression and anxiety and stress all piled into my head, never really got used to having cancer before they sorted me.
The doctor that first spotted it found 2 others same week with the same thing, they are no longer here.
I am.

I have to do things differently now, everything in my world has changed, i am no longer indestructible.

Took me ages to work out my mental state was not as it should be.

Herself has been amazing as have the Mersyside NHS

I am slowly getting there.

So cancer, fk off !!!!!!!!!!!!!!!!!!!!!!

Don't feel guilty about surviving cancer (though survivor's guilt is actually a very common 'gift' with this disease). Live your life, walk away from the negativity of it all and for every moment that you are alive, happy and laughing, you and the army of those who walk, away stick two fingers up at all it does.

Good for you

I concur but would go furthef to say you also have a gift to share! As have I and others on this thread. And long and wide may it continue.

Let people know that cancer does not always win! It's our duty to spread the word.

The knowledge that's its not the automatic killer it was can help people overcome their fear and go for early diagnosis.

Well said.

Absolutely agree with comments. I'm currently deep into my own battle with the bxrstxrd and I WANT to hear about people who have won.

Well done!

[WinkleHoff]

Drivin me nuts, thank you for the advice, it makes a lot of sense.

Since my Mum's diagnosis, I have spoken to many people who have suffered the same cancer as her. The survival rate is poor for this type, yet people DO survive it. I spoke to one guy who was 13 years post op and living a normal life. I also know another chap who is now five years on. My Mum had a chance, she was in the small percentage who are actually operable, but it hasn't worked out as we all hoped (re-occurrence is 50/50). Everybody did (and continues to do) everything they can. But there are plenty of success stories out there, so take those battling MUST take hope. Things have moved on so much.

As for my Mum, she is still here right now and I am hoping that some chemo will help her, who knows, it may be very effective and help her lead a normal life as long as possible so we can create as many memories as we can with my little boy. I am so proud of my Mum.

[Du1point8]

At 1pm Finnish time yesterday, my OH's closest friend lost her battle with a brain tumour, however it was not the tumour that ultimately got her, she drown from fluid on the lungs.

She was morphine'd up to the eyeballs and not really there anyway, but I hope she did not suffer in any way, but part of me thinks that slow drowning is not a way I would like to go.

Luckily OH has not made that connection and just happen to mention it to me, I kept quiet and will not be saying a word, we are just awaiting the date that we will be going across for the final visit.