Aggressive Stage 4 Small Cell Cancer
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26 posts since
26 Feb 2020
My husband has had 6 rounds of chemo. They told us after round 3 the cancer has not stabilised. We were also told that he had to have a 3 month break from chemo. I told them, that he would not live the 3 month break. I asked what plan they had put in place to help stop him going in to hospital as an emergency as this would almost certainly happen. Their reply was ” we don’t have one”. 3 weeks after chemo ceasing, he isn’t eating, sleeping over 12 hrs a day and his neck, face, throat has swollen badly. He has SVCO, his neck and chest have veins popping out through the struggle of getting the blood from his heart to his brain and round.
I feel as though they are refusing my husband who is only 48 years old treatment because of financial reasons rather than health reasons as he responded healthily during chemo.
Is this what happens? Should I sit down and keep quiet? Or do I continue to fight for treatment? His local GP and Macmillan Nurse are asking why he can’t have radiotherapy on the neck area and continue with his chemo?
160 posts since
4 Jun 2019
Hi I am so sorry to hear about your husband.I would fight for his treatment he is young he doesnt deserve to be dumped.Its disquisting.
Its not fair and not right so please fight their decision.
Take care
Denise
26 posts since
26 Feb 2020
I asked again about chemo. And again the consultant has said it is not under discussion. They are offering radiotherapy but insisted it would only work for a short period.
8 posts since
12 May 2020
Hi,
so sorry for what you are going through. If the nurse and Doc are questioning this. Then fight for it. If you are not happy and don’t feel you are being given enough reasoning. I would suggest going the the hospital PALS service.
I personally had to fight to even get my husband diagnosed.
If you are not happy don’t sit back. you should not be left with the “we don’t know” answer. That is unacceptable.
Be strong lovely. I know how hard this is. My husband is only 42
xxxx
26 posts since
26 Feb 2020
How are you coping with this lordanidis? I’m just absolutely destroy it all. I’m so angry and upset. I just cant imagine being left behind.
254 posts since
13 Jan 2020
Hello Hopeinhell,
what an absolutely horrid position to be in,l just shudder inside when l think of it.Having read your post l think l understand some of what you are conveying,but my apologies if l have it wrong.
your medical team have said the treatment is having no effect on the cancer.Is the 3 month break a result of your husbands health being unable to cope with further treatment,or is it a case that the chemo drugs used need to clear his system before a different drug could be tried,one that would clash with the current one within his body to a dangerous level, or are they saying no further treatment is possible and there is no point continuing .
Certainly if it were the latter the argument could be made for its use under pallitive care if as you say, it was having a beneficial effect.If it is the former and they intend further treatment,you should be making it clear to them how much he is suffering and out of sight,out of mind is not an answer,and be pushing hard for solutions to mitigate the effects whilst he is awaiting any change of treatment.
They say a fight is not worth the having unless the cause is just,they do not come with any clearer justification than the one you now face,
l hope you win through,
David
8 posts since
12 May 2020
I know how you feel about being left behind. I look at my children and know I have to be strong. I don’t know how I will do this.
xxx
26 posts since
26 Feb 2020
They have said that the chemo is not stabilising his cancer. Which we know of but in my mind, it is keeping him alive for just a bit longer. He was coping very well with the chemo and he was on strong doses. They have said that the chemo toxins will kill him. Which of course I’m well aware but the cancer “toxins” are also killing him.
The consultant said they only offered 4 chemo’s and he has had 6. Like I should be grateful! Sorry I’m just angry and was hoping for a miracle. He is having 5 radiotherapy treatments next week.
26 posts since
26 Feb 2020
Thing is we don’t have to be strong. My friends tell me I’m allowed to cry and I’m allowed to be selfish. I don’t feel I can be selfish and I don’t feel any of this should be about me, it’s about him. I go to bed at night and just cry because I hurt so much that my husband has been told he is dying, in effect. 
8 posts since
12 May 2020
You don’t have to be selfish, if you are not a selfish person then your not going to start being one now. But this is about both of you. It’s of course very much about your husband. Because you love him it becomes very much about you. We are unfortunately the ones left to cope with the feeling of loss ring them even when they are still here. We are the ones who wake up everyday if we managed to get some sleep to realise it’s one less day. We know it and nothing can change it. These are very very difficult emotions to process. Then we have to deal with their mood swings. Which can be so hurtful and the feeling of rejection at a time when you really just need them to hold and protect your heart, is heart breaking all by itself. So yes you can cry when you need, you don’t have to bottle it up until no one sees you. This is what in the end will make us naturally stronger. We won’t be strong all the time and we will crumble. These are natural feelings.
I totally understand the feeling of trying to get more chemo to keep him longer. Try and be kind to yourself. Have you made contact with a councillor or have you someone who you can process your feelings with that can be consistent for you?
sending you all the love in the world. No one can understand the feelings you have, until they are here in this.
253 posts since
6 Jul 2017
Hi Hopeinhell,
Really sorry about your husband. There is nothing I can say to make it better.
A point is always reached, if the disease is incurable, when the very limited benefits of treatment are outweighed by the side effects. And although it is really, really hard, this needs to be faced up to, for the sake of your husband. So please listen carefully to your husband’s medical team.
If they advise against further chemo it really is because it is not a good idea.
But there is nothing preventing you from seeking a second opinion. Your current medical team will be able to arrange this for you. You can be confident that the second opinion will be independent.
If you do follow this course, and the second opinion concurs with the present medical team, then try to overcome your anticipatory grief, and accept that the objective switches to your husband being as serene, and comfortable, as possible for the rest of his life. This will be so hard for you, but there really is no other way. The alternative is worse: forcing your husband to undergo gruelling treatments for the rest of his life, without any benefit.
I wish you and your husband every strength. xx Harry
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