Now Ye're Talking - To A Cancer Survivor

Dav

Hello all,

This week I'd like you to meet Luke92 who took on and won a battle against Acute Myeloid Leukaemia. He is, I'm delighted to say, now cancer free thanks to chemo and a bone marrow transplant!

I remember a time where you couldn't speak the word cancer out loud in Ireland, as if saying it's name would mean you'd catch it. 1 in 3 people will develop some form of cancer in their lives, so it's probably a good thing that as a nation, we copped ourselves on and now tackle it head on and now people are proud to support research and care charities.

So welcome Luike92, I'm glad you're here to tell your tale

What was the first thing you did upon receiving the news of your being cancer free?

Lux23

How did you cope with telling people? If you could give advice to family and friends of people who have just been diagnosed, what would you say to them? How can they be the best support?

Dozen Wicked Words

Great news you won the fight. How did you find cancer services where you are, inpatient and out?

Iang87

When you first received the news how did you react? Was there any time for you to feel sorry for yourself or does something takeover where you decide its here now lets fight it

Mr. Manager

Fantastic news on winning the battle!

Upon hearing the news, did you live your day-to-day life the same and try keep normal routine or did you secretly want to start ticking some things off your then made up bucket list? (assuming by your username that you're quite young so wouldn't have had an extensive list to begin with...)

Luke92

[Deleted User] wrote: »

What was the first thing you did upon receiving the news of your being cancer free?

Nothing much really, I was still an inpatient and knew I had at least 2 more rounds of chemo coming up. I was quite happy (obviously) but couldn't celebrate too much.

DeltaWhite

So happy for you to be cancer free such a great thing to hear!

My dad was just diagnosed with cancer last week and although we aren't sure yet how serious it is, I am finding it so hard to be normal around him. Do you have any advice on how you wished people acted/behaved around you or any advice for me on how to try not lose it in front of my Dad in the coming weeks.

Luke92

Lux23 wrote: »

How did you cope with telling people? If you could give advice to family and friends of people who have just been diagnosed, what would you say to them? How can they be the best support?

I didn't really have to tell many people. I had my girlfriend and mam ring friends and family so that part wasn't too hard.

And advice wise, be positive! Keep their spirits up and just keep thinking of the future. Never let them doubt themselves. Once you start doubting then you start losing faith and it can lead to a very bad place mentally.

Luke92

Dozen Wicked Words wrote: »

Great news you won the fight. How did you find cancer services where you are, inpatient and out?

Well for me, I'm a 10 minute walk from St James hospital. They have the national bone marrow transplant unit and have the best purpose built facilities in Ireland. They're so good I knew a lady from Belfast that the NHS paid for to come to St James to avail of the services.

And with leukaemia, as it affects the production of white blood cells (which fight infections) then you have to be an inpatient, and they're all private rooms with the highest standard of cleanliness.

Luke92

Iang87 wrote: »

When you first received the news how did you react? Was there any time for you to feel sorry for yourself or does something takeover where you decide its here now lets fight it

Crying and disbelief. The first few days were a blur, as I had so many infections I was on every anti you can think of (antibiotics, antiviral, antibacterial). Then I had to go and have some sperm froze, then right after that's done the chemo starts.

I probably cried for 5 minutes then I was just in disbelief and shock. Its all a bit crazy and hectic for the first 3 days.

After them first few days I had come to terms with it and wasn't feeling too down. I'm the sort of person that can just get over things, the WiFi password was the first thing I asked for after been shown to my room.

Luke92

Cereal Rapper wrote: »

Fantastic news on winning the battle!

Upon hearing the news, did you live your day-to-day life the same and try keep normal routine or did you secretly want to start ticking some things off your then made up bucket list? (assuming by your username that you're quite young so wouldn't have had an extensive list to begin with...)

Well as an inpatient, life just stops really. From mid October to mid February I was in hospital for about 12 weeks of that period. So the little time I had out was spent with family and then friends visiting. And to be honest I'm just living my life as normal now. I've started travelling quite a bit more, been on 4 holidays since September 2014.

A lot of stuff I would have loved to do, is now not gonna happen. With a bone marrow transplant they wipe my whole immune system, like totally blank as in new born kind of blank. So I have to get all my vaccinations again and start a new immune system from scratch.

And because of that, I have been told to steer well clear of anywhere that malaria is a possibility and other tropical diseases. As my immune system wouldn't be able to fight anything foreign.

I'm still on immunosuppressive medication, have been since the transplant. So I still have no real immune system. I have had a common cold around 9-10 times since November, the no immune system is the biggest pain!

Luke92

DeltaWhite wrote: »

So happy for you to be cancer free such a great thing to hear!

My dad was just diagnosed with cancer last week and although we aren't sure yet how serious it is, I am finding it so hard to be normal around him. Do you have any advice on how you wished people acted/behaved around you or any advice for me on how to try not lose it in front of my Dad in the coming weeks.

Everyone is different and all cancers are different. You just have to keep strong, easier said than done I know. One piece of advice is try not get emotional and cry around him, he will feel that's his fault and it could get him down. I know I got upset if anyone was crying over me, felt like they didn't think it would end well and it puts doubts in your mind.

DeltaWhite

Luke92 wrote: »

Everyone is different and all cancers are different. You just have to keep strong, easier said than done I know. One piece of advice is try not get emotional and cry around him, he will feel that's his fault and it could get him down. I know I got upset if anyone was crying over me, felt like they didn't think it would end well and it puts doubts in your mind.

Cannot possibly thank you enough for this advice. Really appreciate it and needed to hear it. I wish you the best in the future and so happy for you

qo2cj1dsne8y4k

I don't have a question, cancer is still something I can't seem to talk about without getting upset but I just want to say I'm delighted to read you're cancer free and that you came out the other side of such a nasty disease. Just want to wish you all the best for a healthy and happy life from here forward

orthsquel

Do people treat you differently since battling cancer compared to before it was diagnosed?

How were and are people's attitudes towards you having had cancer, are there those that are just dismissive in the sense of "oh it's just another cancer" and think you're making more of a deal about it than necessary like cancer is just a buzzword, or have people generally had a bit more tact?

Did you have people that maybe you weren't close to anymore popping up wanting to show sympathy on hearing the news?

LUZ

its great to hear of someone beating such a horrible illness, good luck for the future!!

How did you know/find out you were ill? was it something gradual and not quite right? i ask because i always wonder about getting aches and pains, tiredness etc checked out and think that id know if there was something really wrong.

CathyMoran

Luke92 I am thrilled for you - I know how scary it is (8.5 year esophageal cancer survivor and mother of two children under 6). I do feel that it is worse for the carers than going through it because you get a strength from within.

Frito

I'm really pleased that your leukaemia is in remission. And long may it continue.

Was your stem-cell transplant from yourself or another donor?
If it was another donor, did it take long to find a match? Do you think about the donor?


If anyone donates blood, please consider bone marrow donation.
If you don't give blood, please consider it!

Do you feel as a survivor any different to people who gave up on the treatment?

I think of Glen Hansard who speaks of how he wrote the song "song of hope" for a friend who "did the chemo.... got sick.... did the chemo.... got sick.... did the chemo... got sick..... and thought to himself 'F the chemo'"

From the "well" person perspective I can imagine what it must be like to be diagnosed "well" a few times only to get sick again.... that they might simply declare "F it.... come what may..." From someone like you who actually did get well.... do you have a differnt perspective. Or is it a case that you know your OWN chances.... and sometimes you just have to call it?

Terrontress

I think that the word ' cancer' is so powerful, ballistic even, that it is difficult to discuss it without using hushed tones or some form of quasi reverence.

Once you knew you had it, did you become more matter of fact and were you ever able to laugh about it, take the mick out of yourself?

Luke92

orthsquel wrote: »

Do people treat you differently since battling cancer compared to before it was diagnosed?

How were and are people's attitudes towards you having had cancer, are there those that are just dismissive in the sense of "oh it's just another cancer" and think you're making more of a deal about it than necessary like cancer is just a buzzword, or have people generally had a bit more tact?

Did you have people that maybe you weren't close to anymore popping up wanting to show sympathy on hearing the news?

Most people I see on a daily basis were the same with me. Its better that way, normality. Then getting out of hospital and everything people just ask how I'm doing and how it all went.

I've never found anyone dismissive of it no, I think all cancers are a horrible disease and I couldn't see how anyone could be dismissive of it.

And no to the last one, people I seen on a daily/weekly basis I still seen them, but nobody came out of the woodwork really, just messages of support through Facebook from friends and acquaintance's.

Luke92

LUZ wrote: »

its great to hear of someone beating such a horrible illness, good luck for the future!!

How did you know/find out you were ill? was it something gradual and not quite right? i ask because i always wonder about getting aches and pains, tiredness etc checked out and think that id know if there was something really wrong.

Google ! I diagnosed myself! The symptoms for my type of leukaemia are the same as the mumps, they were the 2 possibilities. Leukaemia or the mumps! I was never wishing to have the mumps more in my life lol.

I was initially diagnosed by my gp with a viral infection! Then 2 days later went to hospital and was joking with the nurse in triage that it was either the mumps or leukaemia, and then when I start getting a lot of blood taken and doctors looking after me I kind of knew.

9/10 times even if google says that your symptoms are cancer, it will be something very minor. I just happened to be that 1/10!

Luke92

CathyMoran wrote: »

Luke92 I am thrilled for you - I know how scary it is (8.5 year esophageal cancer survivor and mother of two children under 6). I do feel that it is worse for the carers than going through it because you get a strength from within.

Yeah I found the people around me took it harder than I did! They were always more upset and struggling than I did. At times I was the one looking after them!

With leukaemia, once they clear up all the symptom infections (the mouth does be a cesspit of infection), I felt like I wasn't sick, I was just in hospital not allowed to leave my room and everyone fussing over me!

The chemo wasn't even that bad, except for the one before transplant. I couldn't hold food down for maybe a week after each treatment but other than that I was quite well.

With the chemo before transplant, it was much harder! With it comes something called mucositis, and it is supposed one of the most painful things you could go through. Luckily, the doctors know this will happen and the second you have the first symptom (sore throat) they put you on a morphine drip! I slept for a week on that drip!

Luke92

Frito wrote: »

I'm really pleased that your leukaemia is in remission. And long may it continue.

Was your stem-cell transplant from yourself or another donor?
If it was another donor, did it take long to find a match? Do you think about the donor?


If anyone donates blood, please consider bone marrow donation.
If you don't give blood, please consider it!

It was actually my sister . There is a 1 in 4 chance a sibling will match and my 1 and only sister was luckily a match

She was a full blood and bone marrow match. I think there are 5 markers in blood that have to match and 12 in bone marrow, she matched all 5 and 12 markers! So I was very lucky.

I still got GvHD (Graft versus host disease). Its basically where my sisters cells see me as a foreign body and attack me. It mainly attacks the skin, mouth and gut/liver. I had it of the skin, which cleared up with the help of steroids. Then I got it of the mouth, which is basically just having a dry mouth and a sensitivity to spicy foods. Again everyone is different and some people can get sores and ulcers in their mouths.

I've actually got chronic gvh of the mouth. So it can come and go for life. If I get a flare up I just use an oral steroid mouth wash and it clears up.

And I agree, everyone that can should give blood and sign onto the bone marrow registry!

Its a simple procedure that has no lasting effects on the donor but can save a life!

Gloomtastic!

Best wishes for your remission OP and thanks for doing this AMA.

Did you have health insurance and did it make any difference to your treatment?

Do you work and if yes, how were your employers to your predicament?

Luke92

[Deleted User] wrote: »

Do you feel as a survivor any different to people who gave up on the treatment?

I think of Glen Hansard who speaks of how he wrote the song "song of hope" for a friend who "did the chemo.... got sick.... did the chemo.... got sick.... did the chemo... got sick..... and thought to himself 'F the chemo'"

From the "well" person perspective I can imagine what it must be like to be diagnosed "well" a few times only to get sick again.... that they might simply declare "F it.... come what may..." From someone like you who actually did get well.... do you have a differnt perspective. Or is it a case that you know your OWN chances.... and sometimes you just have to call it?

I see people on Facebook sharing stuff about natural cancer treatments and stuff. That chemo is just a poison on the body. Yes its hard on the body, but one bad to combat another! It worked for me and I know it works. It comes with some horrible side effects which can affect me in later life (a higher risk of another cancer).

I just have to think, I'm here now and won't be going anywhere soon! I have chemo to partly thank for that. If I do get another cancer it will more than likely be very later in life 60+, and at the rate cancer treatments are advancing I'm very optimistic by then it will be a non issue!

I pm a guy on boarda who has been through what I have (a bone marrow transplant), after many relapses of another cancer (lymphoma) had a bone marrow transplant and it was all good for 2+ years. But unfortunately, he recently messaged me saying it was back and its now more chemo for him.

Everyone is different, for every success story there is someone struggling with relapse after relapse.

If I know someone has gone through cancer I have a new found respect for them. Its a tough road, and getting it young, it then hangs over you for the rest of your life. I just look at the bright side of life and get on with things

Luke92

Terrontress wrote: »

I think that the word ' cancer' is so powerful, ballistic even, that it is difficult to discuss it without using hushed tones or some form of quasi reverence.

Once you knew you had it, did you become more matter of fact and were you ever able to laugh about it, take the mick out of yourself?

That's exactly what happened. I had it so I could openly talk about it without thinking I would offend somebody. And with my family, if you can't take a joke you won't survive. My uncle (more like a father) came to hospital when I had just been told. He told the nurse he was here to show me what I would look like (he's bald). The nurse didn't laugh but I did!

I have always slagged and messed with my family (sisters, mother, uncles, aunties and cousins), so it didn't stop, I messed and slagged them and they just had a new slagging for me (baldy lol). If they hadn't of done that then it wouldn't be normal for me, the same uncle used to say that I wasn't even sick I was just an attention seeker.

If it hadn't of been normal then I would've found it even more difficult! And all that was normal so I didn't even notice it.

Once I was in hospital trying to sleep and a nurse came in, she noticed I was tired and said just give me a second I'll be out of your hair in a second. I was totally bald lol. She was horrified at what she had said but I was just laughing. Better to laugh than cry.

Gran Hermano

Chemo is being used on this thread as if it is one treatment. Different people can have completely different cocktails of drugs as part of their chemo prescription. Even people with the same type of cancer can be on different types of chemo.
I've had four types of chemo, all different side effects. Worth noting not everyone experiences the same side effects and side effects are often cumulative with nerve damage and neuropathy worsening in medium-long termeven after treatments stop.

Two things I was told by my oncologist
- everyone is completely different when it comes to treatment/prognosis. Don't generalise and be careful comparing and sharing experiences.
- don't 'do a google' if diagnosed. Again everyone differs and with rapid developments in treatments you googling and reading a thread/article from even a few years back may mean what you're educating yourself with is outdated.

Luke92

Gloomtastic! wrote: »

Best wishes for your remission OP and thanks for doing this AMA.

Did you have health insurance and did it make any difference to your treatment?

Do you work and if yes, how were your employers to your predicament?

No health insurance (I was 21 being diagnosed and doing a web design course in college, health insurance was a million miles away from my mind!)

Had to jump through a few hoops to get a medical card though! A lot of bureaucratic crap! As I was out of college and in hospital, I was not entitled to any job seekers and I hadn't enough credits for illness benefit. So I had to apply for disability allowance.

My first try at a medical card was rejected, so I rang to see why the reason was. As I was living at home and had no income, I was under my mother's care. To get a medical card I had to be earning at least 166/week. When I said I had applied for disability allowance and that it would be 188/week, I was told that that was then too much to be entitled to a medical card, I could get a gp visit card.

So going from 166 to 188 (a difference of 22 euro), disqualified me from getting a medical card. I eventually had to get onto local politicians ( I believe it was brought up in that dail). And after a lot of phone calls and letters I was finally given a medical card as I had a condition which would cause me undue financial hardship.

Getting a medical card can be hard! Especially when its really needed.

Scarinae

Congratulations on being cancer free, that's fantastic! It's great that your sister was such a good match for you as well. I don't know much about bone marrow transplants - do you need to take immunosuppressive drugs, and if so for how long?

Do you find that your priorities or general outlook on life has changed compared to how you were before your diagnosis?

orthsquel

Just sort of occurred to me - you were 12 weeks as an inpatient, in a clean or sterile room, were there any creature comforts you would have loved there with you that you weren't allowed?

You sound like an incredibly optimistic person and have the ability to laugh off the situation you were in - did anyone, doctors and nurses find that odd or think that you were putting on a brave front for the benefit of others at first, until they got to know you?

pyxxel

Great to hear your survival story, Luke, and gratz to you! Obviously being cancer-free doesn't mean you're suddenly totally healthy again, but I wish you all the best for your steady recovery.

My mother got breast cancer late in her life (over the age of 70) and eventually had both breasts removed. Because she was so elderly the cancer did not grow or spread at a great rate, and she was totally fine, lymph nodes were OK etc.

For anyone who has elderly relatives who are diagnosed with cancer, the good news is that the later you get it in life, the less likely it is to kill you. Still, early diagnosis is the key.