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Mum diagnosed with Small Cell Lung Cancer

LiquidGalaxy
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Hi,

I'm a 34 year old guy and on Thursday my mum was diagnosed with incurable small cell Lung cancer. It was diagnosed by taking a sample from a tumour that had appeared in her neck. She hasn't had the full body scan yet so we don't know where else it's gone but she's in pain from this neck tumour and I hate seeing her like this.

im exceptionally close to my mum and I legitimately don't want to be here without her. I'm completely broken, I have looked online and survival rates for this type of cancer and the statistics are pretty much the worst of any cancer. She will start chemo after the scan and I can only hope that it puts it into remission for many years but I don't know...

I booked a holiday to Florida for the both of us a couple of months ago as a treat for her 60th birthday. She hasn't been back since we went there as a family with my dad back in 1993 and she was so excited and happy about going. Now I don't know if she will be here come then and it kills me.

I feel like im grieving already, I can't sleep, and when I do I wake up I start crying as I realise it isn't all a nightmare. Every minute I have new memories of my life as a child, teen and young adult where me and my mum had such happy times and it breaks me even more. I can't lose her, I just can't...

I dont know know what to do...does anyone have positive news about this type of cancer? What can I expect the scan to show? Apart from the pain of the tumour in her neck she's fine (nights and mornings are the worst), she's physically fit and the hospital have already told her their plans for chemo (18 weeks, chemo for 3 days then rest and repeat).

i just want to believe that she'll be here for many more years...or at least well enough to go to America come April...

Thanks for any help.

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    Hi, so sorry to hear about your mum. My sister was diagnosed with small cell lung cancer at the beginning of the year for which she received chemotherapy and radiotherapy on the lung and the brain. Aggressive though this type of cancer is it does tend to respond well to chemotherapy as was the case initially with my sister. At the time of diagnosis the lung was the primary and was staged as limited. When it spreads beyond the primary it's staged as extensive. Following her initial treatment which was deemed successful it has spread to another area for which she's currently undergoing 18 weeks of chemo. With the scan they'll be looking for the primary site and if and where it's spread in the body. The best advice I can give you is to take one day at a time and put all your energy into what you CAN do for her, research the side effects of the chemo so you're both prepared. Chemotherapy is accumulative so potentially side effects can worsen with each round. Right here and now I'd suggest you organise some mobility aids, (wheelchair, walker, walking stick) fatigue is an issue here so make it as easy for her to get around as possible so she can save energy for nice times. Apply for a disabled badge now. You might not need these things initially but it takes time to organise and it's good to have these things in place. Keep everywhere clean, immune system is shot with the chemo so the less germs the better. Nutrition is really important so juices, smoothies, and supplements too if doc says is ok. It's just as important you look after yourself too. Nausea may well be an issue too, you can order sealable sick bags online. We have them in every room just in case during chemo. She may well have skin sensitivity as a result of the chemo, there's a website called beauty despite cancer where you can source all manner of specially devised lotions and potions to make her feel beautiful. There's also a site called simply wigs where you can source the softest hats. There's a huge amount of help and support out there. Find out what cancer services there are in your area and talk through what's available with your mum. You can't control the cancer but you can be in control of making your own path through it all. Scary though it is I've found it a huge help to research and try and understand as much as I can about this form of cancer and potential complications and no the statistics aren't very positive but everyone is different and the outcome is in no way set in stone. Shower your mum in as much love as you can and spoil her rotten. Fill her with as much fresh fruit and veg (organic if poss)and make her as comfy as you can. Make her laugh (most important) and hug and squeeze her and make the most of every single moment. It's a scary and overwhelming time for you both but today is all anyone can deal with and today is what you need to focus on. I hope you find this helpful and wish you the very best of luck on your journey.
  • Offline in reply to Jean4
    Hi Jean, Thanks for your info. She has the CT scan on Wednesday and the app with the Oncologist is on Thursday. I'm gonna go down and ask everything about treatments and trials including those not available on the NHS. I refuse to accept the stats on the Internet. I want to do absolutely everything I can. The tumour in her neck has gotten so big now that it's pulling down on the right side of her face literally making it look like she's had a stroke or something. It's painful for me to see her in this state. I hate it!! I also feel angry as it seems that treatment is taking ages to start. It's likely not going to be until next Monday and I'm worried that this is giving the cancer a chance to spread everywhere...I'm so scared about the future. I went to my doctors today and literally went to pieces. All he done was sign me off work and prescribe some anti depressants, which I don't really want to take. I wasn't given any counselling information or anything all that positive that I could take away. I will take one day at a time like you say...I'm trying so hard to be happy for her but I just can't. Every time I see her face I feel like crying. Hope all goes well with your sister though. Love to you both.
  • Offline in reply to LiquidGalaxy
    Hi Liquid Galaxy, Sorry to hear about your mum its so sad. My mum(45) me (27) has just been diagnosed with the same but it has travelled to her head (skin cancer). They have told her that it is terminal so she will never be rid of it and they can try and contain it with Chemo which she starts a week on Monday. I can relate to everything you have said in your post although at this moment i seem to be dealing with it ok..... i dont know if it has sunk in just yet. My mum also suffers from an auto immune disease called lupus which means her body creates an anti body that eats all her good cells. This is going to cause complications in regards to the amount of infection she will be prone to. The cycle of chemo she is receiving is 1 week on (at the hospital having intrevenus drip 2/3 times) and 2 weeks rest a 3 month cycle and then will be rescanned. My main priority at this time is to try and keep her as positive as can be, she does not feel ill the only thing she is struggling with is shortness of breath. The next week i will be trying to get her out to do all the things she loves to do before she gets ill. I hope your mum is ok (as ok as can be) and for you...talking really does help. I find it easier talking to strangers because im finding my friends are trying to treat me differently as if i have changed. I am here for support if you ever need it or just a chat xx
  • Offline in reply to daniellejade159
    Hi Danielle, I'm sorry about your mum too, I hope that she remains with you for a good while longer yet! You never know right? There are survival stories out there. My mum is starting the same chemo as your mum this Wednesday (carboplatin and etoposide) but I just feel so lost. I also think I need to talk to a professional or something you know? The thought of her not being here anymore is killing me. Today and yesterday when she went out with her friend and I was on my own in the house I cried so hard I couldn't breath. I've also been researching suicide on the internet. I'm not an emotionally strong person, I never have been, and I really don't think I'll be able to go on when they say that there's nothing more they can do. We had the chat with the oncologist and they say that it hasn't spread anywhere else (that they can see), I don't really know if that's good or bad anymore. Feels irrelevant to me, the cancer is there and it's incurable, that's it. It's currently on her lung and in the lymph nodes of her neck. I try not to look at statistics but I do and the direness of it all makes me feel so overwhelmed. I'd like to be there for you too if I can. My friends are similar to yours. They keep telling me to stay positive and that I'm acting like my mum has already gone, and maybe I am but I can't help it right now. I wish you all the best Danielle, you sound a lot stronger than I, hopefully you can send some of that strength my way too...Please keep in touch xx
  • in reply to LiquidGalaxy

    Hi LiquidGalaxy, 

    I'm sorry to hear you're feeling so lost at the moment and struggling with the thought of your mum not being here but try to not think too far in to the future and take each day at a time if you can.

    It's great you're sharing your thoughts and connecting with others in a similar situation. Our community are really supportive and will understand how you are feeling but I also wanted to let you know that if you feel like you need to talk to someone about what you're going through maybe you could give the Samaritans a call? You can find their website here and you can talk to them on 116 123. This number is free and they are available 24 hours a day, 365 days a year.

    Stay strong LiquidGalaxy and remember that we are here for you if you need us.

    Kind Regards, 

    Steph, Cancer Chat Moderator

  • Offline in reply to Moderator Steph

    Hi, My mum starts chemo tomorrow but the pain is getting progressively worse each day, usually worse in the mornings. Everyone has started coming around to visit her lately and i hate it...that is what people tend to do when a person isn't going to be around much longer and i'm still not accepting that! I can't!

    She had her CT scan last week and they said that the tumor in her neck is from a primary on her lung but that, as far as they could see, it hasn't gone anywhere else. However they never gave us a prognosis or even staged the disease so i don't really know what to think. They said she was healthy enough to start chemo for 18 weeks and then she will probably be sent to Oxford for radiotherapy afterwards.

    I hate seeing my mum in the pain that she is in currently. I'm still crying everyday as there is always a point where all the happy memories will come flooding in and i just can't deal with it. Only last year we were going on summer bike rides and she would make sandwiches and little packed lunches for us to have half way through the journey. I can't think of things like this and then come to the realization that she might not be here in a years time. It breaks me and i just want to end myself.

    I've been signed off work for 4 weeks and I've been referred to a counselor this coming Monday, but I just don't think it will help. I just don't want to be here anymore...

  • Offline in reply to LiquidGalaxy

    Hi Liquid Galaxy,

    Sorry it has taken so long to reply

    You have just advised me that there aee survival stories out there so you need to have some hope. I know it is easier said than done but you need to stop looking so far ahead and concentrate on what is here and now and enjoy every minute you can with you mum. It is brilliant news that she is still up out and about doing normal things and not just sat at home (which is what my mum has been doing) for the last week as she is still in utter shock! 

    I dont want this to sound hard but suicide? dint you think that is a little selfish seeing as you mum would probably do anything to stay here and by fighting this cancer she is showing that. For you to go and throw your own life away it would have been pointless her going through everything she is about to.

    I have been through this unfortunatley with 2 of my very close family members over the past 5 years (unfotunatley they have both past away but due to different situations to what we are dealing with one was diagnosed to late and the other had a heart attack after being told his tumour had shrunk and the chemo was working) so i know what to expect but this does not make it any easier for me as i know what our mums are about to go through.

    I think you have done the right thing going to speak to someone because you are going to have to be the strong one from now on and it will be good for you to talk to someone.

    Please keep in touch i am here to talk and im sure my day will come when all of this gets to much but right now my prioroty is keeping my mum strong for the fight she is about to start, My mum starts Chemo a week today. x

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    i can understand how this feels for you- and you must find strength and get some support to help you deal with this- my love of my life my husband Daryl who is 50 has just been diagnosed with stage 4 lung cancer so i face the pain you are dealing with - we are awaiting the chemo date and it appears to be so long in coming. I cant bare to think about life with out my fun loving life partner - and i am scared of being alone and being an emotinal burden on my children who are on the journey into ther own life. I live via Daryl - who is the extovert and so forth and i cant bare what i am going through- so i guess i am saying i understand. I lost my mother to lung cancer 10 years ago and your pain will in time be managed and i hope that this knoweldge will help you and me in the next period. Please seek some support all of you and my wishes go to you all Tracey xxx

  • Offline in reply to traceyc

    Hi my mum has just been diagnosed with small cell lung cancer. She has been told that there isnt a cure but there maybe treatment she could have in the meantime. She has had so many tests over the past couple of months and she has really had enough as she is feeling very unwell, tiredness, constipation, headaches. We are due to see the oncologist on wednesday but shes contemplating not having any treatment as she has had enough and seems like shes given up. I have moved my mum in with me and my partner. She is 69 and lives alone. Im not coping very well and have been signed off work for a few weeks. Im in pieces and cant believe its happening. I hate seeing my mum in pain like this. I cant stop crying and cant sleep at night and have really bad anxiety. Really dont know how to carry on without my mum. We are so close.

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