Cancer Chat online community
Hi my name is Ali, I am 39 years old and have just been told I have terminal cancer, I thought I had a sore neck. After a few scans on my neck then a full body CT scan, my sore neck has now turned into Kidney Cancer, which seems to have also spread to my, Liver, lymph glands in the abdomen and the chest and my lungs. There are secondary’s in the neck, base of the skull, ribs, pelvis and spine as well as the brain. They tell me that they can’t do much to help me apart from some radiotherapy to help the pain in my neck then some pills which may help a bit but do have some side effects. Any whoooooo they have given me 1-3 years to get on and enjoy my life.
It’s been two weeks now since I was told, and to be honest I can’t believe how well I have taken this. I don’t know if I’m just trying to be strong for my partner and my family and friend’s. I have not lost it for even a second. In no way am I in denial, I have read and looked up everything I can. I have told all my family, friends and work mates. I did find hard to tell my family and close friends. I'm still waiting for it to hit me like a train. I make jokes and laugh about it. I have tried to put myself in a venerable mentality but I just can’t seem to break down. Maybe I’m just not the type to fall apart but I’m worried that maybe it will hit me like a tonne of bricks when I least expect it.
I’d be interested to know if others have dealt with or known people who have reacted like me.
Hi Alichap, I am so so sorry!!!! I can't give any advice about how you'll feel in the future once it hits home, you could be in understandable shock and it's probably your defence mechanism kicking in at the moment but no doubt someone else will come on and give you some advice how to cope with the devastating news, I just wanted to reply to your post and just support you a bit. When you feel like venting, we're here, heard it all before and more importantly understand. When it's hard to talk to family and friends remember your virtual friends going through the same and come and talk to us XXXX
Thanks for your reply Bobbie. Yes I thought that it must be shock and I would crack at any moment, but the opposite seems to be happening, as I find it so easy to talk about with friends and family and find I am the one trying to support them. It seems to me like I have taken the news like I have just been told my summer holiday has been cancelled in a few years’ time. I really have tried to let myself go to have a cry or something but just can’t. I have never been one for opening up much about my feelings but I really don’t feel like I am numb and hiding anything. So hence the reason I am on here, maybe talking to people I do not know may produce a response from myself. Or maybe it’s just the way I am, which is strange to me as I enjoy my life and do not want to have it ended so soon.
Aww, finding words to help you feel better are few and far between. Enjoy this state as long as you can, it might not kick in, you sound a very upbeat person and everyone reacts differently to situations, even life and death situations. I'm currently waiting for the results of a CT scan and to be honest, I don't give it a second thought, I'll face it if or when I have to but for now I'm enjoying my life. I'm in no position to advise though as I'm not where you are now. Have they got a treatment plan or anything for you? Are you being supported by professionals etc?
Well i hope your scan comes back clear. My treatment starts next week, two weeks of radiotherapy which will just target my neck and head as that’s where I get most of my pain. Then I am to start some drug called Sunitinib or Sutent, which may or may not make me feel rubbish, have to wait and see. But I think that’s about all they are planning at the moment, it seems to have spread to widely to do much about.
Hello Ali, my hubby has been much the same as you and did not bresk down initally, 1st March he had a check up having has stomach cancer 2 years ago, he was fit and strong and given the all clear on the 1st March, 3 weeks later we were sat in front of the consultant telling us that there was nothing they could do for him, whilst we broke down around him he remained calm and strong, bless him, but as the cancer has really taken hold he has now become emotional and at times tearful, I suspect that it affects everyone differently.
I think the end is close for my hubby as he is deteriating fast, but I hope that you can remain strong and enjoy your family and friends and I wish you all the luck in the world, take care
I can't tell from your name and you only say "partner" not wife or husband. I suspect you are a man. You men truly are from Mars - and I mean that in the nicest way. I am wading through the Men Are From Mars Women Are From Venus book at the present to gain some understanding to my husband's calm acceptance that his Stage IV colon cancer which had been in remission since May 2006 is now back with a vengeance and not being cowed by eight months of chemo. Even first time round he only cried once or twice that I can remember, while I quietly wept/cried/sobbed/howled like a banshee depending on the situation. Yes, I am female! You men are pretty stoic. Men don't make a fuss about the facts, we women get very emotional, vent, then feel better.
So I wait to be surprised or amazed or smug that I got it right. And I've just had a thought that I could look on your profile and all will be revealed!
Don't be surprised if you are still in shock weeks later. Ian was diagnosed with colon cancer in Nov 2005 and dealt with it an operation and subsequent CT and chemo for one lung secondary calmly and stoicly. It was only when we were told a second "shadow" had disappeared which was a secondary missed by the radiologist (and taken for a scar) and that there was no chance now of cure (maybe 1-2yrs remission) that Ian wept and wept and took to his bed in despair for four days. Then he got up and got on with it.
And, just on a encouraging note, the oncologist got it very wrong and Ian went 5yrs 2mths remission before relapse. He's still fighting but is soon to end chemo with no other options apparently available. We have yet to explore that scenario more deeply with the oncologist. Ian just wants to get on with these last few weeks of chemo and deal with the next bit then and only then.
Don't underestimate the power of black humor - you say you make jokes and laugh about it - one or two people were very taken aback by my saying that Ian's colon cancer in his lungs didn't surprise me, I knew he'd always talked s.....t (the site will probably bleep that but I think you'll get my drift!)
If it all does hit you like a tonne of bricks, go with the flow. Cry, wail, punch pillows, whatever it takes to get through the moment. I read that crying is the only way to release stress hormones - they come out in your tears - don't know if that's really true or not - but I use that as my excuse when I bawl cos Ian's a lovely man who should have lived to a ripe old age and it's just not fair...
There you go - proved myself right. I just posted the message to you and looked up your profile and there you are - a red-blooded male! So that probably does explain your calmness.
Good luck Ali - aim for the three years and prove 'em wrong and double it!!!!
You are made of tougher stuff than me i sobbed my way through my first chemo-that was when they told me it had spread.I was 37 and just had my 40th birthday this weekend.The rollar coaster is a good description of the cancer ride-with periods of calm when you coukl almost forget and then whoosh off you go
.I think that is partly why i come on here because it can feel like you are living two lives at the same time-on the one hand -school run,walk the dog ,make the tea,do the shopping on the other scans ,doctors visits,drugs ,side effects of drugs things that you are unable to do.I still have to remind myself that i am not lazy ,i am sick.
You are pretty young for this to hit you does it run in your family?The reason i ask is there are clinical trials out there for people with gene mutations.
Thank you for all your kind words, it dismays and amazes me how many people out there are in similar situations. Having no experience of Cancer in my family it really is an eye opener to find out how many are affected by it. Maybe that’s why I’m not taking a nose dive after being told. Maybe I just have no concept about what is about to happen to me. But I think I’d rather stay positive and upbeat as long as I can. The hardest thing I have to deal with at the moment is my partner, who is not dealing with it as I am, I find I have to comfort her a lot, and as such I am not confiding in her as much as I should because I don’t want to upset her any more. But now she is asking why I’m not telling her how I feel. I have never been one for letting my feelings out in to the open. Now I feel like I can’t deal with it in my way, but have to try to act like she wants me to. I just can’t get all emotional about it, maybe it’s just the way I deal with it, but it’s my way and I could do without this pressure to conform to her idea of grief. I’m sure there will be plenty of times in the future when I do feel like **** and feel down but while I can feel upbeat and happy surely it’s best to make the most of the good times. Again thanks for all your messages, I hope you all find some happiness in your life’s.
Hello, i am really sorry to see a young man like you have this terrible illness x. My name is Debbie i am 50 and have terminal lung cancer, with rthe same mets as you almost.... i have been on a trial for 2 years now and so far so good, touch wood...
i have thought that thank god it was me that had this and no one else in my family.... why not me? so many others have been told they have cancer over the years in my family. Hope that you can get some treatment that helps you carry on being well and hope the treatment takes away your pain, love Deb xxx
Ali, you've saved me asking if your partner is male or female In this day and age it's just as likely to be one as the other! And to harp on about the Mars and Venus thing, your reaction and hers were almost inevitably going to be different. As I said Ian was pretty calm and stoic. I just wanted to talk and discuss and research and talk some more - still do I have learned not to push Ian too hard to express his deepest inner feelings. Often I can tell more just by looking at him, really looking at him. And it's all about what little he does say too. For instance, tonight on Day 4 of the chemo cycle I'll ask as we snuggle down at bedtime "How are you feeling?" and I'll put money on him answering "OK." To people outside our little bubble when they've asked that same question and he's said that, they've read way more into it than that and decided he's doing fine. I know that's my man's shorthand answer for "Not so great." If, on the other hand, he says "Good" I know that with our "new normal" he means "Great." We women need to pad it out don't we and you men have short, sweet, concise answers and don't feel the need to go into great deep emotional detail.
Can you talk to your partner about it? Tell her that although you don't go into huge detail you don't love her less or want to hurt her? Or make a point of saying that if you something really brief like "It's tough today" that that should speak volumes to her?
Our social worker suggested six years ago when she joined us on Ian's long cancer journey that we should always make a point of saying "thank you." That Ian should remember to say thankyou each time I did something nice for him - a meal, a nice cuppa, fetching and carrying.... and that I as the carer should remember to thank him too when, on his well days, he might make me a cuppa etc or even just thank him for trying so hard to fight this cancer. Andrea said it's real easy for the sick one to start to feel a burden and the carer to start to feel put upon. It might sound a bit forced at first or contrived but it soon begins to come naturally and each knows that the other values and appreciates their help.
Has your partner got any close female friends she can turn to to talk/vent/rage/cry with? Because we females are so good at that, she'd get it out of her system. I'm not trivialising how she feels - no way - because it's exactly my reaction, I want to talk everything through, reanalyse every word an oncologist or nurse or whatever has said and Ian just wants to get the bit between his teeth and get on with it.
You are right to be upbeat and happy when you can. We record programmes on the Comedy Channel, go to amusing plays, seek out happy friends (rationing time with downbeat, grumpy ones). There WILL be plenty of downbeat, heartbreaking times. You are strapped into a huge rollercoaster ride and there are ups and downs coming your way you won't believe.
But believe me when I say the last 6 1/2yrs that Ian has been fighting cancer we have had the most wonderful (and sometimes the most awful) times together but we have only got stronger. The fight has brought out the best in each of us. Ian talks, sometimes, a little more about how he feels than before. I try to talk a little less and instead read his body language or translate his brief comments into the longer, more verbose sentences I am good at!! After all, I am from Venus, and he (the lovely man) is from Mars.
Hope this helps!!