Diagnosed at a young age

If you're diagnosed with cancer at a young age, you might have very specific concerns as to its impact - this group's a space for those diagnosed at a young age to share and talk about their experiences with others of a similar age.

Accepting mortality

InvisiblePuzzle
Posted by

Hello, among all of it there is one thing I really struggle with and I hope I can get some answers or tips here. How can you accept your own mortality at this early point of your life? I'm 24, with glioblastoma and I've been given 18 months at it's best. Death is not something unknown for me, I've dealt with tough losses couple of times before, but now at this point, standing and facing the possibilty of my own end, is something which seems impossible to accept. I'm through my first week of treatment and I'm trying to stay strong and positive, but it hits me everytime when I'm unable to do some tasks I was usually able to. I wish I could ignore it, make it disappear, althrought I know I'll have to learn how to accept it. If that's even possible. I've been three exams away from my Masters degree in architecture, I've had a nice job in my profession and was totally devoted to the career. I gave everything to achieve my dreams one day but I'm afraid that one day won't come. Just trying to make sense of it all in these dark moments...if there is any.

Ana

greg777
Posted by

Hi Ana,

I am so so sorry to read about what is happening for you, it must have come as such as a massive shock and must still be very raw just a month or so on.

My experience is different, I was 36 on diagnosis, and I wasn’t given a prognosis, just that the cancer was incurable. But I have contemplated the thoughts that are in your post so I thought I would offer what helped me. I’m not sure if it is “acceptance” per se, but I did get to a place of “it is what it is”. It took me a long time to get there, with many difficulties on the way, and it is not a permanent state of serenity, but I do feel better mentally now than I have been in the past. Deep breathing really helped - I needed a psychologist at one point, and he did some breathing with me, and at the end, I honestly felt a calmness in not minding whether this was going to be my last breath or not. It was kind of the notion of letting go of control and noticing the simplicity of the breath and everything around us. Staying strong and positive are good things, but they are not things you can force if that makes sense. For me, it was the notion that I could fight as much as I liked, the fighting in of itself was a guarantee for nothing. What was going to happen to me was out of my control, including and most importantly my own mortality. It was horrendously difficult at 36, so it must be 10 times worse at 24. Anger, frustration, why me?, they are all very valid thoughts. I came to a place which says everyone is on their own path, this just happens to be mine. 

The beauty for me is in the moment, in the now. If you have a dream, that dream is still alive today and you should continue to dream it. In my experience, there’s not much point in fast-forwarding to the future, it is going to be what it is going to be. I still hate the thought of being dead, but I no longer try to fight it.

I hope this helps in some small way.

Greg

InvisiblePuzzle
Posted by

Thank you Greg. I'm having a painful day so will reply more on better occasion.

Ginajsy
Posted by

Hi Ana

I was diagnosed lung cancer at 34. At 35 in April this year it had spread to my brain. I knew it would be incurable at that stage. I had two craniotomies and within 7 weeks I was scanned again to find I was recurring and it was also in the lining of my brain and the scar tissue. So whilst I have never asked for prognosis, I know time will likely be limited.

I massively struggled and still do struggle to deal with it. I am lucky enough I do have treatment options. I had full brain radiotherapy, now am half way through a chemotherapy course. I ummed whether to accept more treatment, but each time I am too scared to say no, as that would likely mean I wouldn't be here much sooner.

Most of the time I find I am in denial. I keep thinking once this treatment side effects pass. I will feel better and have good days. There are times when I can't be in denial and I grieve all the things I will miss out on.

I was admitted to hospital last week due to chemotherapy complications. This is the first time that a doctor asked me, not that they expected it to happen, but if I did pass away, would I want them to try and resuscitate me? I knew my answer would be no and had decided that before. However thinking it to yourself is very different for the doctor to feel it was now appropriate to ask the question. I lay awake crying to myself hoping I would get to go home again. I am home now.

What I have done is made contact with my local hospice and they have done a lot of things for me. From organising drivers, complimentary therapies, physiotherapy, gym use, hot meals, a short stay to get on top of pains and medications, an allocated nurse and a consultant I see regularly which is really good. They also offer counselling too. So if you are offered the hospice, I would recommend saying yes, I was very reluctant to say yes at first, but it really has helped me.

For me in terms of muddling through, I focus on day to day and seeing one treatment at a time. Breaking it all down into manageable chunks.

As I try not to look far into the future, I brake this down too. For example, I am interested to see if the UK etc do come out of the EU at the end of this month. November I have a niece's birthday and should also finish chemotherapy. December I should be able to start immunotherapy and Christmas. I would like to see 2020 and I also have another niece or nephew due in February.

I do hope this helps a little and maybe you can try some different ways of dealing with it all. But as for how you accept it, I definitely do not have that answer either as I haven't either. I just keep hoping the longer I am about for, they may by some miracle come up with another treatment or cure. I know that is likely a zilch chance, but I do think you need to give yourself aims and even if it's fantisfull hope. Some say they find God, which I am sure is great if you do, but I've never believed  so doubt I would now,

Gina

There are no perfect people, only perfect intentions

♬I should've been more than this, I was gonna be something big, But I never did anything at all ♬ Dan Owen - Icarus
InvisiblePuzzle
Posted by

Hi Greg,

After a rough week and break down on Saturday I will try to gather some thoughts into meaningful reply. I am really grateful that you shared your experiences with me and have been thinking of what you wrote. I have realised that besides anger, fear and denial, letting go of control is the hardest to cope with for me. To give up my independency and control over my life and lose the basic abilities as a human being. It is clear to me that you haven't come to that point of your life over the night and the difficulties you have had to overcome on the way. I like the breathing strategy and I am sure I will try it at some point because when panic arrives, breathing is the biggest struggle and by managing this it might help me to come in peace with things in general. I am nowhere near this point yet, but I am aware of the range of this disease and fighting against it by neglecting and looking away am sure won't bring the peace in my life.

Thank you Greg once again for sharing your experince, I really appreciate it and find it helpful. 

Ana

InvisiblePuzzle
Posted by

Hi Gina, 

I'd like to thank you for taking time to post this and for the experiences and thoughts you shared with me. I am so very sorry to read about your situation and can empathize with  my whole heart.

I am happy the hospice has helped you and have been thinking about that as many of you recommend it, but I still find myself in big denial and as well very clumsy at seeking proper help. Last week I needed to ask for additional home care help for the first time and I find it very hard to accept that fact. I have always been thinking that when people lose their basic abilities, they lose their humanity. Breaking down the future plans into managable parts seems like a good way to handle the situation. I know I will have to give up on the bigger picture of my life and take what has left. Even the thought of doing this is horrible, so by that I think you posess so much strenght and courage and I admire you for that.

My best wishes, 

Ana