Life goes on around us while we go through hell. How can we make it bearable?

Hi All

I'm supporting my husband with his stage 3 inoperable lung cancer. Recently they told him there is no point in carrying on with chemo because it is causing more harm than good and it didn't even shrink the tumours. He was also told no to radiotherapy. I go to work everyday, look at my happy colleagues and feel worse. Of course I'm not wishing they are in my position but I just wish I were as happy as they are. The sound of their constant laughter sends me to tears and It feels so lonely with very few people understanding what we are going through. Roy Castle is the only place where I don't feel that way. Thank you for giving us the chance to express our feelings with no inhibitions and no judgement.

I'm sure that I'm not the only one who wants to know how can we make things bearable. There are people who tell you to try and have good memories while you can but how can you go past the fear and the agonizing sadness inside? there are people who tell you to go on holiday but they forget that one income doesn't stretch that far and even if you put it on the credit card, the travel insurance quotes are so high it makes it impossible!!!

Thank you.

NT21

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17 Replies

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  • I know companies can not endorse nutrition. I have my mum who is in a similar situation doing alkalising diet as much as she can, visualising and also was recommended essiac capsules if you buy it only get the one from Canada as others are fake. We got a shock with customs 141 on top of the original expense. Look at you tube for info. I know people are desperate and I know people prey in others but faith and prayers and belief in gods nutrition can not do us harm, also my friend had her mum have stage 4 and received chart radio therapy not suitable for my mum but it doesn't hurst for you to ask the question. I know it's overwhelming at times. We are all doing what we can.

  • Hi Alexmit,

    There is no research evidence to support the alkalising diet. It is very important for families to communicate with the medical staff if any herbal remedies or special diets are given to cancer patients as they can sometimes act with conventional treatments.

    Kind regards,

    The Roy Castle Helpline Team

  • Hi NT, I'm sorry that you're feeling so sad and isolated and am sending you virtual hugs. I'm wondering, Is there a Maggie's Centre attached to the hospital where your husband has been having his treatment? They do all kinds of support at these centres including talking therapy where you can talk out with a counsellor how you're feeling. They also provide facilities to just drop in and have a brew and a chat with others who are dealing with cancer, either as patients or as carers. If you don't have a Maggie's, do you have access to Macmillan or a Macmillan nurse? Other than that, go and have a chat with your gp about how you're feeling and see if they can offer support. I wish you all the best, take care xx

  • Hi NT u21 my husband is been diagnosed with stage 3 inoperble lung cancer as well . T4 N1 his having his 3rd Chemo next week followed by radiation. It's hard to watch our love one suffered . His oncologist told us that he only have 10 to 20 % curable but we always have hope. My husband suffered for at least a week of fatigue after chemo. I'm always giving him fluid at least 2 litres a day and feeding him with foods that is lots of protein, So far he did not loose some weight, even though sometimes he will get angry with me by keep feeding him but for me that is the only way that we could fight or otherwise the cancer will eat him. That is what I keep telling him..For me whatever happened at least we try and fight and don't feel any regrets at the end.... Sending you hugs I know what you feel. And I'm the only carer it' s hard but we get over it. I know where all gonna go there but it's the matter of when.

  • Hi, I am sorry to hear your husband is not responding to Chemo. Have they done any tests to see if there are mutations like EGFR or ALK1, there are others that ought to be checked for. If he has any then there are targeted therapies for them which have good results. I saw in a news feed only the other day that AstraZenica have a new drug for the treatment of Lung Cancer, this is an immunotherapy drug and has shown good results if you have a certain type. I believe NICE have approved it's use. It would be worth asking his oncologist about these other treatments, they are normally used after Chemo doesn't work. It is hard to see your loved one go through this but try to keep positive and talk to someone about your concerns it helps.

  • Sorry to hear about your husband sometimes families are going through their own particular hell and feeling of isolation. I am stage iv nsclc with egfr + mutation and on a targeted drug called tarceva. I have found a website inspire.com very helpful and supportive, it does what it says. Although it is mostly American, cancer knows no boundaries and there are others from all over the world. Another website is cancergrace, type in any question and a top oncologist will respond. Hope this goes someway in letting you know that you are not alone. Stay strong.

  • Thank you all for your kind replies. I will definitely try what you have suggested and as I said before, this is the only place where I don't feel alone. So thank you again from the bottom of my heart. NT21

  • Why doesn't the drs. Try some immunotherapy drugs? My husband never got a chance to take it. Chemo & radiation did not work for him. Good luck! Is there any cancer support groups where you are?

  • It sounds like you have been given good advice from people on this site. As people have said above the Inspire website is good and very supportive. Visiting your GP and saying how you are feeling is good advice, they will have dealt with lots of people in the same situation as yourself. I have stage 4 lung cancer and have taken anti depressants to help me through a difficult period. The mac millan nurse was helpful at this time too. I have also been to a Maggies Centre which I must say was really amazing. I felt like I was on holiday. We try to have nice trips out and enjoy the outdoors too. Try doing the things that you both like Hope this helps Xx

  • Sorry just thought have you asked about clinical trials for treatment options?

  • Hi NT I do not know what you are going through, although my partner must as I have non-curable lung cancer, I am going through chemo with my fingers crossed. But the main reason for me replying is that as my cancer is not curable my lung nurse filled out the forms and sent of for PIP payments (apparently for under 64s only - not sure your age), but these payment do add a lot to our income (we both retired early), but we use the money to go away about every 3wks on my good one, we go off to hotels in England with lots to see within a short walking distance - these short breaks do help us both - hopefully you can manage to get these payments as well.

    Thinking of you both. x

  • Thank you all again for your suggestions. Inspire. Com is a great website. I will ask about trials when I next see the oncologist. I have also looked at Maggies website which offers good support. We are not entitled to any government support mainly because I am working so according to the government even when I'm on low wages and my husband is out of work because of his illness, they will not lift a finger to help and again penalising working people. Apparently you have either to be completely crippled or have less than 6 months to live. The fact that my husband has incurable cancer doesn't mean anything to them. Shocking really considering that we paid our taxes all our lives and never claimed anything. Never!

    Any way, I think I got that out of my system!! I really appreciate all your suggestions. Thank you again for your support.

    NT21

  • Hi NTu21,

    I am sorry to hear about your husbands situation and that he has not responded well to treatment. You should have the details of your husbands lung cancer nurse specialist who can discuss your husbands management with you and if there are any other avenues you can explore based on his individual tumour type.Everyone with lung cancer is managed individually based on the type of cancer, stage of the disease and their general health.

    I have attached the link from the Roy castle foundation website for a patient grant if you fulfill the criteria roycastle.org/system/file_u... .

    Mc millan also provide some grants if you fulfill the criteria see

    macmillan.org.uk/informatio...

    It might be worth asking your social work department to do a benefits check for your husband(they sometimes do home visits)to make sure that he would receive anything he is entitled to.

    If you think you(or both you and your husband) might like to attend a support group if you call the nurse Helpline Free phone 0800 368 7200)depending on where you live we can see it there is a support group locally which may be of some benefit.

    Kind regards,

    All the team at the Roy Castle Helpline

  • Thank you Roy Castle team for the links and support. You've been great help to me and my husband through these hard times and we are ever so grateful to you all.

    NT21

  • I think the terror and that agonizing and constant knot in the stomach is a torture in itself. The feelings of utter panic and fear rises and falls as each day goes on and it seems the little oasis of calm are few and far between. But, for me, I try and think of it as sometjing I cant control and so best get on with it. I watch more TV, play with the computer, read, get engrossed at work and then suddenly realise the panic has subsided and I feel almost normal. I go to bed early, sleep more and I admit I have a large glass of wine most days.

    I have T2 lung cancer and going in to have part if lung removed this Saturday followed by chemo or radio. I am lucky really as they think they can get rid of it, at least for a while, so we shall see.

    Stay strong and know that you are not alone. Life goes on and we should make the best of each day, even with little nice things x

  • Thanks Val for the nice things you said. I turned to writing and i find that it helps too and I came to the conclusion that whether we are weak or strong, we have no choice but to fight. And you are right, when I'm busy my brain doesn't wander as much. I hope all goes well for you on Saturday.

    Keep in touch

    Lots of love and hugs xxx

    NT21

  • You are a dear, thank you. Lets marvel at how strong we are! :)

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