Hello all and sorry to meet you in these circumstances.
Im 27 and just found out I have incurable cancer. I’m afraid of becoming a burden to those I love more than I am of death, and I don’t know what to expect. My cancer is in my brain and spine so I know it won’t be pretty.
I wanted some advice from those in similar boats, what can I do to cope with this news? How do I decide whether to keep working or not? I’ve got some side effects from some tumours that are yet to be treated but hope they at least go away soon, but have a feeling I’ll be leaving this earth sooner rather than later.
Please, if you can offer any words of wisdom or advice, that would be greatly appreciated.
Love yo you all.
Hi a very hard question to answer, i am sorry you have had to come here, though you are very welcome, and you will get a lot of support, from everyone, when and if you may need it.
I am trying to understand how a person so young, has had this diagnosis, it is really hard, so i cannot imange how you are feeling.
How does one cope, only you know regarding your work situation, and how your work may effect you, if you are having certain symptoms.
You have not stared treatment as yet, so you have a long way to go as such,
Do you have a plan put in place yet and know what your treatment is going to be, when we get a plan and everyone does,,things soon fall into place.
I have done chemo, immunotherapy, and radiotherapy,
Other wise it is one day at a time, and for me before i realized i am coming up for seven years, never ever thought i would be this far or still here, so never ever give up.
Others may come in but it is quiet late, i was just going, though had to reply to you.
Hi Ellie, thanks for replying! I’m sorry, I don’t think I was clear before. I was initially told my cancer was curable and have gone through surgery, chemo and a few rounds of radio. Just recently was told that the “curative” aspect of my treatment is exhausted.
Thank you for responding, and I look forward to hearing others’ perspectives too.
Hello M and welcome.
Ellie has just replied with wise words and I couldn't add anything more to what she has said. I will say that you will get used to what is happening to you and you will get used to your treatment, whatever that may be.
At first it is impossible to come to terms with your diagnosis. It will take over your life, every second, minute and day. BUT, it doesn't stay like that, it cant do. Eventually you get into a routine. You can sleep, you do want to eat, you can watch television and laugh.
I guarantee that will happen, we have all been through the same thing and we are still going through it.
Let us know what is happening, we are a nosy but caring lot.
Hi there!
It's not easy to get this news..we all have been there. It goes in stages...Schock , denial, anger , grief, etc...but you will get used to it. And yes i think to it is harder for our loved ones, cuz they cannot do much. But talk about it . I did keep working until i couldn't anymore..was trying to live a normal as i could. It wasn't easy to stop but i'm used to it now to.Pet
Hi and welcome to the group! We are a friendly bunch...you'll see! Now the first thing I need to say is I can't see Ellie's reply to you, so I'm sorry if I repeat anything already said! I can see Achancer123 & Pet1968's messages and your reply to Ellie. I think the thing to remember is you are incurable not terminal. They have stopped using that word because although incurable you can still be treatable and that can slow the cancer down. Sometimes it brings it to a stop and you become stable (we call it Stable Mable in the Group) and there are a lot of us here who are well passed their 'sell by date'! Cancer Research are coming up with new drugs all the time!
Try to take each day as it comes and you will soon find a way to get through it. My way of coping is to take it one day at a time. Once you have a plan in place for possible treatment, you will feel more settled. There is no point in worrying, it will have no effect except giving you a headache.
Have you thought about asking to be referred to a councillor where you can be honest about how you feel without upsetting your family and friends. Also that is why the group is here, you can tell us anything and it is confidential. We do know how you feel. Ask questions or have a rant. Whatever you think will help! Please let us know how you are doing! Take care, you can do this!
Love Annette x
Hi mementomori , welcome to the group although I wish I'd met you elsewhere. So sorry for you that you have been given this diagnosis at such a young age and my goodness you have been through so much already before you have been told that your curative part of your journey has been exhausted.
If I could pick up on that M, what you have been told is undoubtedly dominating every second of every day, week and month of your life. I'm not saying that I know better than your medics but I have been in your situation since I was diagnosed with an incurable bone marrow cancer back in March 2015, almost 8 years ago.
I and others here have been through exactly what you're going through now and in time the hurt and shock have dissipated through days, weeks and years. In time I hope you will learn to take one day at a time and embrace those days. Several friends here have had a dynamic oncologist who doesn't throw in the towel but they have actively searched for a trial or trials that will fill those friends with hope for the oncoming months. You may not feel like that at present understandably but given time I hope you will.
Only you can make that decision about working on. In my experience my doctors were advising me to stop working and to give my body a chance to fight the disease. However, I felt well enough to keep on truckin' despite having heart disease and a couple of other ailments but when I developed a severe spinal condition that became so painful I found it very difficult to walk, I capitulated. Just as well because a month or so later I became a wheelchair user. That period was difficult and I reached out for counselling.
Your choice of username is very interesting to me as a budding linguist. There was a time when I had different levels of knowledge of 6 languages, (I include English as 1 lol). I never studied Latin but I have picked up enough of it through the years and can I add amor fati to your username.
Never have I come across a group of people who are so supportive to each other and give great advice and knowledge in bucketfuls. It must have been heartening for you when Ellie responded so quickly with great advice. If it were earlier in the day you would have had many more!
I hope I have given you hope for the future mementomori and I look forward to hearing from you soon.
Tvman
Thanks for clarify that as you never said, i was classed as incurable from day one.
A positive attitude really helps, if you can do that, i have found my own way of coping as such, and swear quiet a bit under my breath, at my cancer,
Glad to see others have come along.
Could you fill out your profile so others get an idea of your circumstances so we get an idea about you, You can read other peoples profiles, if you click on my picture you can see mine, that easy,and same with others,
xxxx
Thank you so much for your thoughtful response. I have been distracting myself which seems to be helping, and I think once the initial shock is over I’ll just try to keep living as normally as possible, prioritising experiences and people I love!
Thank you Annette for your thoughtful reply.
I am well-supported by mental health practitioners and just doing lots of distracting myself, I think that is the only thing I can do to avoid the dread!
I feel like I’ve come to the right place here, and am very glad to have a conversation with people who can truly understand what I’m going through.
Memento mori is something I picked up from the stoics when I was initially told I had a recurrence of my cancer, but before I was told it was not curable. An extended version of the phrase is memento mori, memento vivere - loosely translating to “remember you must die, so remember to live”.
Although it applies to everyone, it’s exceptionally comforting to me in this situation and allows me to live without boundaries and follow my whims.
Thank you, tvman, for your reply. I appreciate each and every person who has responded, as this can be a lonely position to be in.
I look forward to connecting with everyone on this forum further.
Whatever cancer throws your way, we’re right there with you.
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