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Being diagnosed with cancer at a young age often means you’ll face challenges that differ to those who sit under an older age bracket; you might feel it has a significant impact of your education, your career, dating and perhaps starting a family - to give but a few examples.
For the above reasons we have our Diagnosed at a young age group – a space for those diagnosed at a young age to share and talk about their experiences.
Over the next month I’ll be sharing a few Community News posts from members who’ve been diagnosed with cancer at a young age, and agreed to share their story, thoughts and experiences with us.
In today’s post greg777, who was diagnosed with myeloma at the age of 36, shares his story…
Losing the lottery – what was it like being diagnosed at 36?
The closest thing I can equate it to is what I assume the feeling of winning the lottery must be like, only with a bad prize. It’s something you read about in the news but it’s not something you’d ever imagine could really, really happen. Up until that point, maybe I had been incredibly lucky, but I didn’t know anyone who had lost the lottery in their 30’s.
Of course, you then come to realise that you are unfortunately by no means alone. There are sadly a great many people diagnosed in their 30’s. A great many people having to go through a massive, life-changing event at a relatively young age. It can therefore be a great comfort to be on a site like this and meet others who also got a pretty rough deal.
So, what has it meant to get diagnosed in my 30’s? It’s really hard for me to answer that because I have only ever had one life experience, and therefore nothing to compare it against. My guess is that the older you are, the more you probably think it is terrible to get diagnosed in your 30’s. I think that is because at an older age you have more of a sense of what I might have lost. For example, I think that children’s cancers are the worst thing there is, since I can project my feelings of what a child might lose as a result of my own experiences without cancer at their age. I can think how awful it must be to have cancer at that age. I’ll bet though that the child just gets on with it because they don’t have any other experience to grieve for. I think that’s the same with me. I have a feeling that my life might not be as good as it might have been, but I’ve not experienced that other life, so I can’t feel it’s absence as strongly.
I was diagnosed with myeloma, which is currently incurable, and I suppose it is this latter aspect which has hit me the hardest. From day one, cancer for me has not been something to be overcome, to get over and to be forgotten about, it was something that I would have to learn to live with being around for the rest of my life. Myeloma is a relapsing-remitting cancer, meaning it can lay dormant for a while, but as per the brochure, it ‘almost always comes back’. I think that has changed my relationship to it and I don’t think a human in their 30’s is supposed to have to face that crippling examination of one’s own mortality. I have pondered many times what the purpose is of telling someone their cancer is incurable and I’ve still not found a good reason. Maybe if I was older, I could rationalise the incurability a little more easily. The notion that everyone has to die at some point, and maybe this was just a bit of advance warning. But I found that quite hard to deal with psychologically at 36. Yes, it’s just an illness, but it’s an illness that was going to be with me forever, not something where I could say “that’s done and dusted, let’s move on” (although I’m not sure that mindset fully exists in any cancer situation anyway). So, I had to embrace the demons it brought, face it head on, and plough through regardless. And the ploughing through was pretty tough - I went through one hell of an existential crisis. Maybe I was at the age to go through that anyway, but I reckon a cancer diagnosis pointed the edges.
I think the impact on my family has been quite hard. My parents took the news badly (see comments above re: the older you are), I know my older brother and sister suffered too, but I think it was worst for my wife. She had all her dreams cancelled in much the same way as mine, but she had none of the attention nor any ability to control what happened next. I’m very lucky to have had a lot of love and support around me, but it was hard to see the misery I had brought into the lives of the people I love. I’m incredibly lucky that we’d started a family before I got ill, and I have 3 lovely kids. It was sad for me to think about the effects my cancer diagnosis has had on them, which is something I would definitely rather not have had to contemplate, but again I think it is my fears that I am projecting onto them, rather than a true understanding of their own fears, which are likely to be very different.
My career also took a very sideways turn. I’ve nothing to grumble about because I have a relatively good job and my employers have been very good to me, but I have still had to experience the lost potential of what might have been - the ‘look at what you might have won’ type of thing.
I think the most significant thing I’ve experienced though, that is perhaps different with a cancer diagnosis in your 30’s, is the feeling of isolation. There are plenty of people being diagnosed in their 30's in the world, but still there are proportionately not that many. It still feels like losing the lottery. So, I often find that I have very little connection to people the same age as me. Friends and colleagues had mixed responses to my illness. It was too difficult a subject for some to comprehend and so I’ve never once discussed cancer with them. Others have such a terrified look on their faces whenever I see them walking towards me that it would feel wrong to offload on them and exacerbate their fears, and for the inquisitive, I am a fascinating subject and every conversation tends to gravitate to the Big C as if I am some sort of research topic. Ultimately, I can’t really share my experiences, worries or hopes with most people my age since, quite rightly, most will look back very blankly at me. In your 30’s, you are supposed to be in your prime, forging your futures, etc., etc. Hospital stays, medications, wills, bodily problems are not the normal topic of conversation for a 30-something. Also, as much as it is a perk to have the pampering attention of nurses, consultants and fellow patients because you are “unusual”, the fact that you are getting all the attention in a way only serves to confirm that you are a bit on your own in terms of your experience.
So, all in all, what do I think about being diagnosed in my 30’s? I would definitely rather not have lost the lottery, that’s for sure, but 4 years in, it is filed under “it is what it is” and I get on with life as it presents itself. I have a lot to be thankful for and some things to be a bit miffed about, but when all is said and done, it just is what it is. I realise this is written many years from diagnosis, from a place of remission and from a place of relative good health. I know full well how deep the pits of fear, anger and despair can get. But I reason now that the cancer diagnosis is a part of who I am, and some things it has brought about have been positive. I am no longer working every hour under the sun, putting things off for an imagined future or worrying about the little things that are not quite perfect in my life. Now, I do things I really want to do, I spend as much time as I can with the people I care about and I take pleasure in every good thing that comes my way.
I don’t think I would be doing those things if my numbers hadn’t come up, and me and cancer hadn’t unexpectedly collided at age 36.
Big, big thanks to greg777 for sharing the above with us. If you’d like to share your thoughts on being diagnosed with cancer at a young age, go ahead and do so using the comments section below.
Information for teens and young adults affected by cancer can also be found on our main website, here.
Thanks for sharing all that so honestly Greg
Thank you so much Greg for allowing us to hear your story. I'm lost for words as what to say as I am in awe of your mental attitude and selfless way. A cancer diagnosis certainly changes the way you view life and how everything is put into perspective. A truly inspiring story that has made me appreciate my simple life even more. My Nephew was diagnosed with cancer as a baby and endured many years treatment as it returned twice but the impact on his life and himself has had a life changing impact, he is now 18years old. Please keep us all in the community informed of progress. This wonderful site means we can support each other in the one thing we have in common and understand, that's the big C. Keep up the amazing work you are doing Jimmy with McMillan. The story has really touched me. Tracey xx
Great Blog Greg, love your honesty and giving us a glimpse into your ongoing journey.
You are absolutely so amazing and so so brave .....xxxxx
Thanks Greg, I’m 35 .
You are gorgeous and a truly lovely person
As I know you are a non believer I send you secular positive vibes that you will be here for a very long time and feel sure we are just on the brink of a cancer break through
with love and kind wishes
Thanks for this, Greg. I always come away from reading anything you’ve written with my mind opened and my horizons wider
Thanks for sharing Greg. I was 27 when I received a double cancer diagnosis and also can totally relate to the feeling of isolation. Keep on keeping on!
I cannot compare with your cancer at such a young age (mine was at age 63 and is quite recent, colorectal PT4 but caught in time) but I have a rough idea about the drama of being diagnosed young with something life-threatening.
I had my MI (aka heart attack) at age 30 with two kids under 4 and the Missus 8 months pregnant with our 3rd. I then spent a few months in hospital in London before and following a metal heart valve implant, followed by a massive reconstruction of an aneurysm in one leg. I've also had something like 8-10 spontaneous pneumothoraces (collapsed lungs I genuinely forget how many) now have an ICD (pacemaker / defibrillator) and more scars than Frankenstein's monster.
I totally share your feelings of isolation, I was the baby on the ward (everyone else was 60s+ and in there for CABG - bypass ops) and when out again I was the medical freak among my peers. And family though they were good about it.
I was especially impressed with Tessa Jowell from whom I got the phrase "living with it not dying from it" in a speech in the House of Lords. Sadly she dropped off the perch not so long back but I've taken that message to heart to the extent that variations of it form part of my zillions of passwords.
I especially empathise with your other half, mine had to face being 8-9 months gone and I was getting all the attention, and worst of all I wasn't there to help her. This was 1984/5 and there was no internet, mobiles, Skype or anything else we now take for granted. We'd also recently moved hundreds of miles (for my work) to a place with no local family/friends and were skint as well.
Clearly my problems at 30 were fixed with a metal heart valve and a lifetime's Warfarin and I was double your age when I found the cancer but although our experiences are different I do have some idea how you feel/felt.
Good luck mate.
Thanks for sharing this as you put into words what everyone feels when the diagnosis of cancer is given. It must be so much harder to accept when you are young. I was 49 the first time and then 60 when it happened again last year!
You responded to a post I put up about the impact on my life. Your insight was inspiring and great advice on how to manage emotionally!
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