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.

Friends at this age struggle to understand

Luna-May
Posted by

Just wanted to write my thoughts down and hoping some other people may be feeling the same.

One thing I've noticed being younger and having a cancer diagnosis (I'm 21), is that I struggle to get the right sort of support from my friends. I feel like they struggle to fully understand the situation and I sometimes feel like everything is brushed under the carpet a lot. I have found that a lot of my friends are almost too positive and I sometimes think they don't actually realise how serious this illness is and could go on to be. It then makes me feel bad for ever feeling sorry for myself because my friends come across like everything is going to be fine and there is nothing to worry about. 

This is why I am so keen to speak to some people of a similar age and going through this as well so that they can relate. It's hard when I go to my ward for treatment as I hate being there so just get my head down and get on with it and so don't really feel like socializing with anyone else there. But then when I'm at home I just want someone similar to me to talk to. 

Ginajsy
Posted by

Hi Luna-May

I am so sorry you are struggling with your diagnosis and friends. I am older than you (34 when diagnosed) but in many ways I can relate to how you feel with how you do with your friends not able to support you in the way that you need. I was the first or one of the first to be diagnosed within my peer group and there was a complete lack of understanding.

Like you I felt that it wasn't being taken seriously enough, though I did not want it to be down hearted, just acknowledged how significant it was and speaking about the future breezily was not an easy subject for me as at first I could not see too far a future for me. When I tried to be honest with some how serious it was, I found I got shut down with a 'you have to be positive' which is something I now absolutely hate to hear now. I have never felt I have been negative about my diagnosis, just realistic. I won't pretend it will all be fine, though nor do I think the worst. My thoughts have always been that I will trudge for a good quality and lengthy life as long as that is possible.

I found some friends, even very close to me abandoned me. I think this is fear. Some that were not that close to me really stepped and supported me. Later I found some were supportive,... until the novelty wore off and or 'social media' friends as I call them. I was open and honest about my diagnosis as I assumed I couldn't hide it. So I found some people wanted to be seen to be 'the good friend to the cancer patient'.

Like you I have struggled to find the right support. I found the main charities were set up for children diagnosed with cancer, or the older patient where it was more 'normal' to be diagnosed. I didn't feel I fitted in at either end.

Family, I didn't want to burden with all my thoughts and fears and felt they wouldn't understand either. So who to turn to is a difficult one.

What partly helped me as I felt I was the only one diagnosed at my age, was groups like this. Or a place you may want to look is the Shine Cancer Support web page. If you look on that you will find a whole group just for people diagnosed with cancer from 20 - 49. This really helped me. Though I do not post there much, it just helped me to know that sadly how many of us there are diagnosed at this 'inbetweener age'. They also do many meets in various places in England with only young cancer patients. Though of course we would love you to keep posting here too. This is a very new group and we would love to see it thrive for anyone else like us struggling with diagnosis at this age group.

I found too that when I went for treatment I would get curious looks or stared at. When I went for chemotherapy, I noticed people looking round for the 'patient'. It was assumed when I arrived I was there to support a parent.

It is hard to deal with Luna-May but you slowly except it and adjust. I found visiting places like the Macmillan centre for a chat also  helped and you could also ask your GP to refer you for some counselling if that helps.

I hope that helps a little Luna-May, keep posting and ask anything you want, say how you feel. It is amazing how much it releases.

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
nickfreckle
Posted by

^^^^^ Excellent post that. Whilst I'm nowhere near as young as you two above, I'm also the first in my crowd to have a cancer diagnosis. I know people only mean well when they say 'you'll smash this' or 'keep fighting', it does get tiresome.  But It's out of my control, as to whether I smash it, beat it or whatever.

Then, has been mentioned above, the old cliche of 'you've got to think positive'. That one does wind me up. How can I always 'think positive' when after a 10 hour chemo session, I know I'm then going to feel like absolute doggy doo for the next week, only to go and do it again the next week? How can I 'keep positive' when direct debits are coming out of my bank account on a regular basis, and the outgoings at the moment are far more than the oncoming due to being on SSP? How can I 'keep positive' when I don't know if I'm going to keep my bladder and lose full sexual function at 44 years of age?' How can I keep positive when, in reality, if my treatment doesn't work, I could die and leave a wife and 7 year old son?

Obviously those thoughts are not a constant in my head, otherwise I'd end up going nuts, but it's impossible to 'keep positive' all of the time. Sometimes you also have to keep it real. But you try to mention whats really going on, 'keep positive' is generally the default response, and every time that happens, you feel that thy're just not getting it, so you withdraw and don't bother anymore.

It can feel very lonely at times.

Luna-May
Posted by

Hi , thank you for your response!

You really have hit the nail on the head there. It's so nice to know that other people have felt the same and had similar situations when dealing with their friends. I definitely feel because I am too, the first person, for most of my friends, that now know someone who has cancer, that there is a sense of them not knowing what to do or how to handle it - and unfortunately often not acting how I would ideally like them to. I do appreciate that this is hard for family and friends to know what to do or say, because unless you have been through it, you will never really understand. 

I agree. One of the things that gets me down a lot is when people are too quick to look ahead to when treatment is over and everything is fine again - this is very easy for other people to do because of course, they don't spend their weeks planning their life around the next chemo or blood test or scan. Once they are no longer seeing you in person, they can forget it all and carry on with their daily lives and so don't seem to appreciate that this is something I cannot forget about, as much as I would like to. 

Of course, I have had a lot of people who have been amazing and check on me the right amount of times and are also there to talk to about completely different things too, but often the people that I want support from the most have made themselves the most distant and don't seem to care. 

I don't want to be doom and gloom about my future but I also don't want people just assuming everything will be ok, and regardless, I still have had to put my life hold to start the process of getting better in the first place. I had to live a year of my life feeling ill with symptoms of something unknown and none of my friends really empathise with this. 

Thank-you for mentioning that other site. I will definitely have a look but I am also gaining alot from posting and replying to people on here too! 

See the thing is, I am on a teenage cancer trust ward and so there are often people my age there, but I also see so many that are younger or children and I almost feel bad for speaking to them about anything because they are even younger than me, so I have no right to moan or be sad as they have it worse. 

Another thing that I sometimes get down about , is that I have found some people have often asked my boyfriend how he is or how I am through him rather than asking me or messaging me personally. It gets me down as I know getting a message from someone would mean the world to know they are thinking of me. I don't want loads of sympathy but I want to know that people appreciate my existence and that they wouldn't want me to be going through this because when people don't say things like that then I just feel what's the point of trying to get better as noone cares?? I don't know if that's being overdramatic but its one of the many thoughts that flies around my head. 

Luna-May
Posted by

Hi , I totally agree with a lot of things you have said too! 

It is infuriating to be told by people who have no problems going on in their life to be positive about this situation. Without sugar-coating it, it is one of the worst things to be told that you have because instantly you then start thinking about how long you have got left. Even if treatment is successful, this diagnosis and illness will go with you for the rest of your life and so we will always be worried about when/if it will come back etc. Noone other than people with cancer will understand that feeling. 

I'm so glad I'm not alone with these feelings it's so reassuring to know I'm not going mad thinking these things. I also think I'm being unappreciative of the support I do get be voicing that I don't think my friends are saying the right things or that they don't understand. I know it can't be easy for them either. 

I think in a weird way actually seeing people be upset for you or about your situation, is actually quite supportive and comforting because you finally feel like someone is trying to put themselves in your shoes and actually empathise with the situation and do understand the potential severity of your diagnosis. 

greg777
Posted by

Hi Luna-May,

I have become quite philosophical about all this - I think it might be because I am coming up for 4 years post-diagnosis now so have had a long time to think about it!

At first, I had a lot of anger to deal with - the why me? question. It circled around for quite a while and it engendered a lot of resentment to my peers who simply did not get what I was feeling. I hated why the world had not stopped because the world had stopped for me. It was quite isolating, I felt disconnected for quite a long time. It was a weird time because I wanted everyone to feel like the world was falling apart. The problem is, not many people want to actively feel like that or have the capacity to feel like that. A lot of people fall into two camps - either they have zero experience, in which case how can they possibly understand? Or they have experienced personal trauma and are doing their best to avoid painful reminders of it. I think that’s where the “be positive” comments come from - it is actually a self-defense mechanism of the person saying it to shield themselves from negative thoughts. You will actually hear a lot of cancer patients say that it was a positive mental attitude that got them through. Of course, deciding to get out of bed, eat as well as you can and exercising are all positive actions, but it’s not even possible for a human brain to be positive all the time - indeed, how do you know what a positive thought is without something negative to measure it against? So I don’t use the “be positive” mantra, I say accept all your emotions for what they are, they’re all natural and a cancer diagnosis, especially at your age, means you’re bound to have a more than fair share of challenging ones. So don’t be hard on yourself or think you shouldn’t be thinking certain things. The trick for me is to try to not let any one particular emotion take over.

All the best

Greg