My mum has cancer...

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Hi to anyone who takes the time to read this, 

My mum has recently been diagnosed with extra nodal NKT cell lymphoma at the grand age of 52. She found out after having a suspicious blocked nose for around 6 months. At first we were advised it was just a benign tumor and now it is stage one (positive) rare and aggressive, so rare that only 20 people in the UK a year have this type of cancer. So far she has received an opinion from one cancer centre and we are awaiting a second opinion from another.

I was positive at first but recently I have been struggling to see the light at the end of the tunnel. My mum is a fighter, she is the type who wont settle until something is found or solved. So in many ways im really hopeful that she can fight this but from reading research and remission stories I then begin to doubt if she will be around for the future or how long it is that we will have left before things get a lot worse. In summary, I am beginning to feel as though I am bereaving my mum when she is already here and is yet to even touch any form of treatment and I wondered if this was normal. Im 23 and have been suffering with extreme panic attacks, lack of sleep and high functioning anxiety since finding out the diagnosis.

I was in work at the time I found out it was cancer and I just remember everything around me shutting down and I thought I could knock the feeling but I still just want the earth to eat me up or to be woken up and told this isn't real. I have expressed to my mum that I wish it was me, the feeling of helplessness that I feel is awful and the looming hair loss and sickness Is filling me with fear, god only knows how she feels. I have rambled on here, sorry for that, I have to admit it is some what theraputic getting my thoughts down on here. If anyone has any insight or even any words of wisdom I would be grateful. 

Amy 

  • Hey! I completely relate to how youre feeling, I’m 18 and feel like I grieved for my mum so much when I first found out despite her still being the exact same physically as she had had no treatment etc (no progression in state of cancer at the start for months so no deterioration) and now looking back I realise that I was making my life so much harder by thinking this way, I know at the time it is easily the worst thing yoh will ever hear and it is normal to feel like your world is ending but its okay to feel this way for a while, but dont let it consume you! I feel like we can really relate and do not hesitate to message me if you need to! X

  • Hello, I have literally just written a post to reply to you on your page but I refreshed and the whole thing disappeared! Honestly it feels like a massive relief to know someone is in a similar situation to me. I agree with you and i was literally just writing the same thing, I was saying that you should get upset infront of your mum and around your family as its no doubt that they all feel the same. I have recently applied for CBT to help me cope with the situation in hand which is online and easy to acsess. 

    You have described how I feel, my mum hasn't changed one bit physically and i think this somehow makes it harder as you are waiting for it to .happen, constantly waiting for something to get worse isn't a good feeling right? 

    Anyway you are lucky my original post got deleted as I blabbed on for a while, but ditto - I am here, no judgement, anytime that you need to chat. 

    Amy x 

  • FormerMember
    FormerMember

    Hi Amy,

    I know every single feeling that you are going through right now.

    My dad was diagnosed with stage 4 lymphoma around 3 years ago. For the first few weeks I was completely numb, felt so scared and had the worst anxiety I had known. I was 22 and was so worried I was going to lose my dad. After that I tried to forget about what was happening - my advice to you is PLEASE talk to someone and let out everything you are feeling. Thankfully my father got through his fight even though it was touch and go at times, but I never dealt with what was happening at the time. 12 months after he got the all clear I had a complete break down where I was on the verge of ending my life and was in the deepest depression possible, all because I hadn’t dealt with my feelings. 

    Anything is possible with cancer these days with new treatments and medicines - my advice is to live every single day with your mum as if it could be either of your last days on earth. Anything is possible, and I know first hand that miracles really do happen. Every day more you get to spend with someone you love is a bonus.

    My father got told yesterday that his cancer has unfortunately returned, however this time I’m going to face this battle with the most positive attitude possible.

    if you ever need to talk, please just send me a message Heart

  • So reassuring to finally talk to someone that can understand how I’m feeling rather than trying to tell me it will be okay, because I know it wont! It is unfair and heartbreaking and like you am sat here wondering why my beautiful, strong minded mum has been dealt these cards in life. 

    Also, I did see your comment on my post, and thank you so much, you didnt blab on at all. 

    You and your family will be in my thoughts. 

    Hugs xx

  • FormerMember
    FormerMember in reply to annnaemilyy

    Hi, I feel exactly the same way. My Mum was recently diagnosed. She’s 61. She is still relatively well but I am in a state of panic about losing her and feel bereft. She is still waiting on lots of test results. The fact that the pandemic means I can’t spend everyday with her, I find incredibly difficulty. I’m trying to stay positive and focus on the things I can do such as shopping etc. Drop me a message if it would help. Sending you lots of strength x

  • FormerMember
    FormerMember in reply to FormerMember

    Dear Blackbird, how is your mum? How are you? I have just read your post and am in exactly the same position as you. Hope you are OK. 

  • I just cried so hard reading all of these comments I had to make an account! 

    I'm in the exact same position - my mum has recently been diagnosed with stage 4 cancer, and despite the fact she is healthy and well (other than the tumours) and having minimal side effects from the treatment, all I can do is cry and panic that I'm going to lose my mum and feeling bereft everyday. Equally, being in lockdown makes it so hard because I can't see her and I worry I'm wasting my time with her. 

    Just wanted to thank you all for sharing your experiences, and how much it helped to see them and relate to them. 

  • Thank you so much ! I have just seen your post after not being on here for a while and it has made me feel a lot better. i have taken the time to seek help and advice to try to let myself deal with what is going on. My mums treatment is going well, the side effects are just beginning to show but I know it just means that things are working and happening. 

    I am so sorry to hear that your dads cancer has returned and I am in awe of your new found positive attitude as it is something I need to work on. 

    Thank you for taking the time and opening up to me it really does mean the world. 

    I am also here if you would ever need to talk about things :) 

  • I totally agree its refreshing to hear people being open and trying to make you feel better all of the time. 

    Always here if you want to talk and my thoughts are with you all too xx

  • Hello, 

    I am so glad that you have been able to relate to our experiences and that it has helped you. I am also really glad that you have decided to make an account to allow you to seek support. 

    I actually haven't looked at my account here for a month since my original post and you know what I can sit here and say things have got easier. Not in terms of my mums cancer but in terms of dealing with things. I was exactly the same and still am sometimes, I have panic attacks all of the time and I struggle to see the light at the end of the tunnel some days. 

    My advice would be to take each day as it comes, literally. You have to learn to accept that you can't control anything around you at the moment especially in terms of the pandemic and therefore you can just be there, over the phone and be supportive. 

    Does your mum have face time, quite often my mum facetimes me during chemo and we text to try and distract her and that way it helps me feel like im doing something good and less like I have no control over the situation. 

    Do you live far from your mum? I suppose the easing of lockdown and the better weather will hopefully mean you can see her more and start to feel present in the situation. 

    I know its so hard but try to be as positive as you can about the situation, comical that Im telling you when I am literally the worst at it but it is the best thing to be. 

    Do you know what type of cancer it is and what the treatment plan looks like? 

    I am always here (even though I went missing for a month haha - life of a teacher) but no seriously you are never alone and you have made the first step in getting support and feeling better. 

    Amy :)