Tell me about leukaemia…….

  • This topic has 28 replies, 11 voices, and was last updated 1 year ago by  alpin.
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  • Tell me about leukaemia…….
  • alpin
    Member

    I’d be grateful if any of you were willing to share your experiences of leukaemia. Want to know what the road ahead may entail.

    Found out on Saturday mum has leukaemia. She’s started the first phases of chemo. AML type which is supposedly good.

    Have flown back today and am going to St Barts in a bit.

    Feeling a bit scared.

    Tom_W1987
    Member

    Some of the AML subtypes are very survivable, so try to stay positive.

    Pigface
    Member

    Not going to sugar coat this, the only two people who I have known with leukaemia both succumbed to it #fuckcancer

    alpin
    Member

    I appreciate that, pigface…. I don’t want any sugar coating.

    Thanks Tom.

    scud
    Member

    As above, many types and if caught early often one of the better types i’m told for survival rate.

    My wife is head of dosimetry at the cancer clinic at our local hospital, so any questions you feel you have got a straight answer too, fire me an email.

    My 34 year old sister has been fighting ovarian cancer, my uncle has prostate cancer and my grandad had bone cancer, its shite, #fckcancer

    jonba
    Member

    I saw your post on the other thread. Good luck. Without knowing the details it may not all be doom and gloom so in the short term be objective and try to get facts straight – it can be complex so don’t be afraid to quiz doctors and consider carrying a note book or tablet to consultations.

    Try to enjoy some quality time while you can in any case – chemo makes you feel like shit so be prepared for that. Also, people will offer help, they will mean it and so don’t be afraid to ask for it.

    nhs site has info

    http://www.nhs.uk/Conditions/Leukaemia-acute/Pages/Introduction.aspx

    Macmillan is a good resource and worth reading through – covers the basics of the disease and more practical aspects.

    http://www.macmillan.org.uk/information-and-support/index.html

    Marie Curie do some amazing work should you need their services.

    https://www.mariecurie.org.uk/

    Premier Icon I_did_dab
    Subscriber

    My Mum was diagnosed with AML last November. She was too old/frail for aggressive induction chemo and bone marrow transplant (this is a rough option but can be curative). Instead, she went straight onto a Phase II trial of AraC (standard of care) plus an investigational drug, which is intended to be palliative. She didn’t get on with the new drug, but three cycles of AraC seem to have had some benefit (and some nasty side effects). She’s having regular platelet and whole blood transfusions and is still with us. So a big thanks to anyone in the Manchester area who’s a blood donor.

    Premier Icon Sandwich
    Subscriber

    Your mum should be assigned a Nurse Practitioner as part of the process. They are the ones who will give out a mobile number to contact and are there to answer any questions and explain what’s going on. Macmillan tend to fund these helpful people, make use of them.

    Hope your mum makes a full recovery.

    alpin
    Member

    Well today has been a surreal, touching, depressing, shocking, uplifting and tearful experience.

    The peeps at St Barts are amazing.

    I’d rather it was me lying there right now.

    Thank you for your kind words…

    Halt die Ohren steif, ad they say in Germany….

    Tom_W1987
    Member

    Let us know when you get info on the subtype from the doctors Alpin – and how she is holding up.

    Best of wishes! Dark times I know, but most mums want their children to stay strong.

    mindmap3
    Member

    It’s horrible I’m afraid.

    An uncle was diagnosed with it in 2002. He was feelings no tired all the tine and kept getting random bruises so my aunt forced him to see the GP who sent him to the John Radcliffe that afternoon who ran tests etc and confirmed that it was Leukaemia. Luckily one of my aunts was a match, so donated bone marrow. The chemo was tough, really tough. I remember him suffering really really bad mouth ulcers, struggling to eat and generally feeling shit. He did manage a long weekend skiing just seven days after his first mine marrow transplant.

    The first transplant didn’t work, so it was back to square one. Chemo again etc. This time the transplant worked, but the cocktail of drugs to get him to that point proved too much and his liver and kidneys gave up the ghost.

    I was a really hard two years with little glimmers of hope mixed with horrible downs. In those two years he lived life the best he could, did loads of cool stuff and spent a lot of time with his two little girls.

    I hope it’s a better story for you an your family.

    Premier Icon jamj1974
    Subscriber

    Sorry to hear that Alpin.

    Take care,

    Jay

    Premier Icon stealthcat
    Subscriber

    I’ve known 2 adults diagnosed with leukaemia, though I don’t know what type; one diagnosed in his 40’s, one in his 60’s.

    Over 5 years later, they are both still around.

    The older one I think had stem cell transplants, and the younger one had a cord blood treatment.

    It wasn’t pleasant for either of them, and was a bit touch-and-go with the younger one, but they both made it (though with a selection of other, comparatively minor, health issues).

    In other words, it isn’t necessarily an immediate death sentence if the person wants to fight it.

    alpin
    Member

    Thought I’d revisit this thread….. More of a cathartic process for me than anything else.

    Long story short, my mum passed away on Monday.

    She underwent chemo for pretty much all of  last summer and was very sprightly throughout.

    I dropped work and came back to the UK to be with her and support my old man and little sister.

    We had some really good moments with friends and family during hospital visits and at home whilst mum was waiting for her next round of chemo to begin.

    One of her sisters was a stem cell match, but during further blood tests it transpired that she too had some kind of protein in her blood that meant that not only was she not able to donate  but that she too is likely to develop some kind of blood cancer which is incurable! This was a big shock for the whole family.

    In October mum was told that Anthony Nolan had found a donor. She received the transplant in November and was more or less back to normal if you ignored the massive concoction of drugs and her new (original) hair colour.

    In November I went back home to Germany, worked a bit and then just got the arse ache with life. I decided to bugger off down to Italy for a bit of head space and to try and work off the gut I had developed over summer due to the hospital visits and the four of five points a night of forget-about-it juice.

    Perhaps I was too naive or blasé, but when my sister told me mid February that mum was looking ill and had developed a rash I thought nothing of it. When I spoke to mum she always sounded positive and said it was nothing. Then suddenly, after a doctors visit, she was admitted back into Barts.  GVHD, graft vs host disease. The stubborn old cow discharged herself after a few nights. Came home, could barely walk and needed my old man to help her with everything. After a few days at home she said that she needed to get back into hospital. Again, the same thing…. She said she was depressed there and again discharged herself!

    At this point I was back from Italy, still thinking mum would be OK….after all the hospital wouldn’t let her out otherwise? but my sister said I should come over and see her.

    I arrived Saturday.  She looked like a shell of her former self….

    Woke up Sunday and she was having difficulty breathing. Phoned the Hotline at Barts and they advised me to phone for an ambulance.

    She spent Sunday night in the local hospital. My sister and I went to visit first thing Monday. Mum was rigged up to various machines.

    She didn’t recognise who we were. My sister is 7 months pregnant. Mum asked her how far gone she was….. “oh, the same as my daughter”.

    “oh, my son should be here soon”

    That cut deep  but guess it was the drugs and oxygen doing that to her.

    Spoke to the doctor and then put the call out to dad and  mum’s sisters to get to the hospital.

    They pumped mum full of morphine and then I removed her oxygen mask.

    As shitty as it is watching someone, let alone your mum,  die,  I’m glad it was a relatively quick process.

    I’m incredibly humbled by the work of all the hospital staff whom I have had the pleasure of encountering over the past year.

    My family is very fortunate that we are close.

    I think it will take some time for my old man to adjust. Fortunately my sister is his neighbour and her son, my nephew, thinks the world of Papa. Hopefully little Stan will give him something to comfort him, help distract him and concentrate on.

    This was never part of the plan, mum dying first. We always thought that the old man would be the first to go…. I even had a speech for his funeral pre-planned; “he suffered over the last few years,  but nowhere near as much as we did during his lifetime”.

    Strangely, I cried more when I had my cat put down than I have since my mum took her last breath.

    Thanks for your words of support a year ago. It was massively appreciated.

    Pigface
    Member

    So sorry to hear this, big hug

    Premier Icon ahsat
    Subscriber

    Sending many hugs.

    Premier Icon scaredypants
    Subscriber

    That’s shit news alpin

    – sounds like you did it right as a family though.  Take solace from that, and that she probably had a big part in making a family capable of that.  Look after each other and remember her in her happy times.

    (and wot ^ they said – hugs)

    Premier Icon Cougar
    Subscriber

    Well shit.  Sorry dude.

    That cut deep  but guess it was the drugs and oxygen doing that to her.

    Probably.  Even if it wasn’t, brains are funny things.  Just before my dad died, he started calling me Duncan.  Duncan apparently was his brother who died very young (like age 6 or something), I had no idea, never heard of him till that day.  Don’t read anything into it.

    Strangely, I cried more when I had my cat put down than I have since my mum took her last breath.

    I can relate.  a) time and grief are strange bedfellows and b) sometimes emotions rear outside of rationality.

    If you’re ever in East Lancashire, have your people ring my people and we’ll do (a liquid) lunch.

    eddiebaby
    Member

    Sorry to hear that mate. Mine went after fighting back from a stroke 4 years aga. Sat by a bed for 5 hrs waiting someone who wasn’t really my mum anymore to stop breathing was one of the weirdest things to ever happen to me. Still processing it.

    You were there though. That is important. My dad died of a heart attack on a bowls green the day after we’d had a massive Argument. We never had a chance to make up.

    tjagain
    Member

    If at the end you can get close to a peaceful, dignified and painfree death with your loved ones around then thats as good as it gets for a death.  sounds like you made that happen ( in the right way)

    grief is an odd process and it affects everyone differently.  There is no right or wrong way to feel and react.  there is just your reaction.

    PM me if you want to “talk”

    Premier Icon Cougar
    Subscriber

    My dad died of a heart attack on a bowls green the day after we’d had a massive Argument. We never had a chance to make up.

    Don’t beat yourself up over this.  If you’ve spent several years as best buddies but he happened to go out on a low note, that’s just unfortunate timing.  When someone clocks out they knew how you really felt based on the preceding decades, not the last 24 hours.

    Premier Icon jamj1974
    Subscriber

    Alpin.  I am sorry to hear this news.  It sounds as though your mum had many people who loved her.  The fact you were with her when she died – regardless of her confusion, is a positive – she would have felt comforted that people were there regardless.

    I wouldn’t worry about not crying much, if you need to – you definitely will…

    Take care,

    Jay

    Premier Icon jamj1974
    Subscriber

    You were there though. That is important. My dad died of a heart attack on a bowls green the day after we’d had a massive Argument. We never had a chance to make up.

    If you had a reasonably typical relationship, I am sure your dad would know that you loved him, regardless of the argument.  If he was here now – don’t you think he would regret it too…

    curto80
    Member

    A few weeks before 29erKeith died of leukaemia he was mumbling about how he’d unconvered evidence that me and one of our other pals were gay lovers (and therefore cheating on our wives) and how he would make sure the truth would all come out.

    i think it may have been something to do with the hundreds of chemicals being pumped into his body night and day for months at a time.

    god I miss him. 35 is just too young.

    Premier Icon jamj1974
    Subscriber

    A few weeks before 29erKeith died of leukaemia he was mumbling about how he’d unconvered evidence that me and one of our other pals were gay lovers (and therefore cheating on our wives) and how he would make sure the truth would all come out.

    Sounds like the crazy shit I’d say to my mates to make the laugh in a pretty serious situation!

    Premier Icon senor j
    Subscriber

    Very sorry about your Mum.

    Sorry for your loss.

    alpin
    Member

    thank you for your kind words.

    A few weeks before 29erKeith died of leukaemia he was mumbling about how he’d unconvered evidence that me and one of our other pals were gay lovers (and therefore cheating on our wives) and how he would make sure the truth would all come out.

    mum did say to her sisters that they best keep their hands off my old man…!

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