Advanced Small Cell Lung Cancer - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation
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Advanced Small Cell Lung Cancer

My wife was diagnosed with Lung Cancer in Feb19. She was told in march it was Advanced small cell. Tomorrow she starts Carboplatin and Epotiside chemo and I cant tell her that she only has upto 12 months left. She has been very breathless and as its attached to her heart also she is having chest pains. Tina is my life and we would be celebrating our 25 weddind anniversary in april but this bombshell has hit. She is crying all the time and I cry when i go shopping. Any words of help please.

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So sorry that your wife is ill.

Why was she not told? If it were the other way round would you want to know.

Also why the delay in starting treatment, my husband's first chemotherapy was four days after the diagnosis was confirmed.

Is there a local cancer support centre who can help you both or Macmillan nurses.

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We have the Local Cancer hospice involved, and the delay for treatment was due to the first two biopsies being done wrongly. My wife chose to walk away when she was due to be told how long she had. For 2 weeks I have had to cope with her crying and threatening to take her own life many times. My wife is not very strong when it comes to bad news but I have been trying to just comfort her as much as I can. Mc Millan have enough to deal with is my wifes words so I wont over rule her.

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I think you just have to be guided by her and just be honest if she asks any questions. Remember no-one can give a precise answer to the time she has.

You need support as this is tough on a spouse, even if she doesn't want Macmillan involved. Google cancer support in your area and see what there is.

Hope all goes smoothly tomorrow.

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Thanks Dismal. I'm just hoping the same but I try to cope the best I can.

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Dear Babydolltina

Sorry to hear about your wife's diagnosis and such a difficult time for you both.

Perhaps discuss this with the lung cancer specialist nurse, they are they to support both yourself and your wife. Do discuss pain management for your wife either with your GP today if she is in a lot of pain or when she has her chemotherapy tomorrow.

Maggie's centres are very good in providing emotional, practical and social support, they are in most Hospitals, I have placed their website here if you want to look one up in your area, it is a very relaxed, non clinical atmosphere where you can pop in for a cup of tea and chat: maggiescentres.org/

Their Helpline number is 0300 123 1801

Macmillan support would only be too happy to assist or provide support in getting through these days, their helpline number is 0808 808 00 00

It is important for you both to have the emotional support as it is an enormous strain with a mixture of many heightened emotions. There are many people and organisations around who can support you, including the forum where you may find some encouragement.

If you wish to discuss anything you can call our free phone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

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Feel for you and of cause your wife. Its an awful situation to be facing. God blessxx

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Thank You.

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I’m so sorry to hear about your wife’s illness, I lost my husband to this same illness in February 2018, we all deal with things differently, but my husband and I spent as much time as possible when he was feeling strong to build memories for both of us to have in the future. My husband wanted to climb snowdon, have afternoon tea in as many place, renew our wedding vows. These memories helped both of us as his illness progressed, and I have been able to smile and think of these good times whilst grieving. Stay strong and I’m here if you need to chat. Send my love to your precious wife xxx

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Thanks Elaine

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So very sorry for your wife’s diagnosis. It is a horrible thing to hear, that your life will soon be over. Although, no one knows absolutely how long a person may have. Just be there for her and comfort her as best you can. In due time she will know how long she actually has, it will hit her hard, so that is when you need to be strong. Do you have someone you can confide in, to talk to? Your going to need help coping with the inevitable . Many prayers coming your way, God Bless.

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Many Thanks

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Sorry to read of your situation. I have met many patients with advanced lung cancer - some of whom have gone onto live years beyond their initial expectation whether on clinical trials for treatments that have become standard or other factors. Even if the term 'terminal but treatable' is used - some on here and other websites are living years now with lung cancer. I don't think we're aware of that. When I was told I had to lose half my left lung in December 2010 (diagnosed in jan 2011 a month later), 2 months after turning up in A&E, everything I read terrified me - and I thought there were no survivors or good news about lung cancer. In the last 4 years I've become heavily involved in lung cancer research committees/conferences and have been inspired at the raft of treatments and combinations of treatments that are being developed all the time. Every treatment mode has changed in the last 4-5 years so do not give up hope. wishing you luck and courage as you face this.

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Thank you JanetteR57 for your words. This thing has been diagnosed as small cell, The most aggresive form of Cancer about. Sadly I am watching her slip day by day. In 7 weeks she has had 3 biopsies, pet scan, and a kidney function test. She has had her first 2 litres of chemo and tablets and she is just wiped out. The oncologist isn't much help either,very straight talking, matter of fact.

Thanks again for your input and I hope you get on well.

Regards J

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Sorry to read she's wiped out - sometimes it's mental reaction to the process that is as exhausting as anything. Some of the clinicians aren't the best communicators . However you should be allocated a clinical nurse specialist - ask if they have any. They are much more versed in speaking with patients in a practical way. I've known some people just give up at the diagnosis and struggle with everything and others who have taken it a day at a time and soldiered through. I've met patients who have survived years after the time that medics suggested they had (on treatment). I had no idea there were people who survive a long time when I was diagnosed as there was nothing to suggest this and nowhere for this to be publicised. However I have met them at various Cancer charity events, within cancer research groups and Roy Castle events. Very important for anyone to appreciate there is hope - and new treatments and clinical trials in development all the time. I've met people who managed to get treatments on trials that are now standard of care just a few years later. When people become non respondent to one treatment, often there is another one to try... that's important to understand that such a lot has changed in the last few years for lung cancer. take care.

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Thanks JanetteR57. We have several nurses at hand, 2from the local hospice and 1 community nurse. They have all been very helpful in their own field, but sadly its the medication wiping my wife out. Controlled release morphine and anti depressants. My wife is due her 2nd cycle of chemo in 7 days and her hair has started to come out already. This has upset her also. The chemo she is having is just a *get her through* type to try and control it. When you have hospice nurses discussing end of life with you and counselling you just know in your heart what is going to happen.

This world can hurt you, it cuts you deep and leaves a scar,things fall apart, but nothing breaks like a heart.

Good luck with your cancer and I hope you get better

J

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I am so sad after reading your post. My heart goes out to you and your wife. I hope you have family,/friends who can support you both through this difficult time. Sending you a virtual hug.

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Thank You so much. She was in so much pain this weekend it bought me to tears. She refuses any help from docs and certainly wont let you call the Paramedics. Were managing with St Marys and the community nurse, but sadly its only time. All the best to you and I truly hope you get well.

J

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My dad is the same too if we mention calling someone he gets quite upset, I just dont think he wants to be in hospital which I have said that is not the case he will be kept at home which are his wishes. I lost my mom to stomach cancer xmas eve 2010 and that was hard but to have to watch another parent go through this is truly heartbreaking x

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Hello, my mum has just been diagnosed with the same and hasn’t started chemo yet as only found out yesterday.

May I ask why only 12 months? The cancer nurses told me this particular cancer responds well to the chemo and some people can go into remission.

It’s such an awful shock and I promise you’re not alone.

Thinking of you and your wife at this uncertain and scary time xx

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Emkins its all down to the individual. My wifes is advanced as it is wrapped around her heart aswell as on her lung. If she refuse treatment its around 2 months. Its just killing me inside to know i'm going to lose her. Dont ask the nurses ask the Oncologist. I hope she gets on well with her treatment.

j

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So sorry - is that Birmingham's St Mary's hospice or another one? Had a friend there last year (ovarian cancer) who sadly lost her battle ( diagnosed 'til April, chemo through the summer, futile surgery in September and lost her fight in Oct). Hope the morphine can relieve some of the discomfort. Glad to hear the nurses are doing their best. They can be amazing. thinking of you at this very difficult time.

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Yes Janette it is, and thanks again.

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How is your wife doing??

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Emkins, Thanks for asking. Sadly day by day it's getting worse. She is eating less and less, sleeping all the time and generally not with it. It's just the same thing, Pills then sleep. Once every 3 weeks it's chemo. No life really is it?

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No it’s not... they delayed my mum’s treatment so long now, that’s it’s grown massively and reached stage 4. She still has no symptoms which is weird, but going to blast her with chemo. Too big for radio now. I can’t quite believe they’ve waited so long

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I am so sorry to hear this my father was also diagnosed in March, he has had 4 cycles of chemo which has shrunk the tumour but now he has deteriorated and they want to stop treatment as they think it may have gone to his liver. We as a family are totally heartbroken and can only imagine you are all feeling the same too. I will be thinking of your dear wife as we carry on our dads final journey. Take care xx

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Milly, my thoughts and prayers go out to you all. My wife is deteriorating and has also had her 4th cycle 3 weeks ago. It has knocked her off her feet. I know what is on the horizon and i'm gutted and broken inside. It's hard but make memories with your loved ones while you can. God Bless

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We are certainly doing that God bless you too xx

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