Coping with uncertainty and how to best be supportive

New to this.

My partner was diagnosed with stomach cancer in October last year. As upsetting as this was, it seemed that it was lucky they found it early, while the tumour was only through the first two linings in wall of stomach and not through the next two or anywhere else. The scans showed the tumour relatively small, and the lymph nodes clear. It was a plan of 8 weeks chemo, followed by operation to remove the tumour, followed by, probably, another 8 weeks of chemo. We are now in week 1 of the second chemo batch.

He took the first chemo relatively well, did the cold cap and didn't lose his hair, and other than tiredness, didn't have as much trouble as some with the side effects. The operation and recovery has been going well. I'm worried about him eating enough, though he is getting better at adressing this, and also heartbroken for him not sleeping, I think the anxiety rushes in at night, but otherwise he is doing well. He has had more sickness this first week of second chemo, but generally all manageable. 

Before this chemo round, post operation, we were told that from the lymph nodes biopsied at the operation, just over half of those biopsied had microscopic cancer cells. This is hard to know how to compute. I guess it is just uncertain. He finds that very difficult to talk about or think through - compared to before when we thought there was no spread to the lymph nodes and tumour removed -understandably.

 

Does anyone have any information on how fast microscopic cancer in lymph nodes can spread and form new tumours? I dont want to be falsely reassuring with him, in an arbitrary way if that makes sense, but I think remaining hopeful is really important. My approach has been to stay positive and try to reassure that they are on top of it, that the chemo is attempt to deal with it, and that if it moves somewhere else they will be able to see it and deal with it straight away. I find having access to information and being able to do this concretely with facts is the best way, when and if possible. We are generally coping with things in a straightforward and loving way, but the weight of the feeling of not having control, or knowing what will happen in our lives is heavy in the background.

 

But i do feel not informed enough to work out how to be best supportive, or what it actually means now that it has reached the lymph nodes, in terms of his outlook, when previously it seemed very positive that it was contained and they could remove the tumour. I guess that's the uncertainty of it, and probably nothing is going to clarify what to expect for some time now. Maybe someone has some helpful experience or knowledge on here. Or maybe it was just useful to be able to write it down. 

  • Hi if he is still having kemo there is a good chance it can still kill off the C cells in lymph nodes. (you can live with cancer in the nodes I've had it over 3 years now) I'm fine apart from getting old (67) just try to be with him when he is struggling we nearly all get through these hard times (and I know it's very hard) when he is over treatment things will start to get better sometimes it seems a bit slow there is no time limit. Best wishes.

    Billy 

  • Hi Green Laughter 

    so sorry to hear the cancer is in the lymph nodes but this definitely doesn’t necessarily point to s bad prognosis. You just need more info. Will your husband let you attend appts with him? I hope you can get some clear answers next time you see them. 

    Hang in there! It’s exhausting being the carer - make sure you find time for yourself. Are you coping okay? 

  • Hi

    Thanks for your reply. Yeah I've been to all the appointments with him. I just felt quite conscious in the ones since the knowledge that it was in nearby lymph nodes that he was struggling to articulate and compute that, and felt it was better to let him lead on what he wanted to ask the doctor about, in case his coping method was to not ask things he was scared about for now. So it left me personally wanting more information on what it meant. The current (second) round of chemo was still being officially put down as curative, so that was more reassuring than otherwise. My own reckoning is that if they could have been more reassuring they would have been, and if they had more to say that was not good, they would have said it, so guess it's just at an uncertain moment.

    I guess I'm coping fine, it's hard when you feel a bit helpless as to what you can do, and I know he is scared, and understandably he kind of retreats from talking about it, or expressing much, as a way to keep calm I think, which can feel a bit lonely sometimes and it's hard to know whether it's better to just let him deal with it that way or try to encourage him to express a bit more. Suppose it's just getting through the next eight weeks however we can. Thanks for the kind advice.

  • Thanks for your kind reply, and sharing that experience, it helps!

  • It’s hard isn’t it. You want to ask questions but you know your partner needs to take ownership of their diagnosis. The problem with cancer though is that it has an impact on the whole family. My partner was determined to keep everything quiet at first, didn’t want to tell anyone but the reality is that I needed people to talk to and confide in - otherwise I would have become ill with anxiety. 

    I think your partner will gradually come to terms with it and will then not mind if you ask questions. I know you don’t want to upset him but the truth is that if he doesn’t engage with it he will also suffer from anxiety and that will make recovery worse. We found that saying the word ‘cancer’ out loud as often as possible kind of took the fear and power out of it. I know that at the beginning we both avoided it. 

    Sending hugs.