How do you cope?

Hi,I am also new. I am in a similar situation to yourself. Husband diagnosed in March, and after scan we were told three months to potentially eighteen months as it has spread.We also had a three week holiday booked in Menorca, and were planning to move to the West Country this month.

It may sound strange, but the best choice we made was to discuss every aspect of his treatment, appointments and how unwell he was feeling. I thought it would help us all process the emotional trauma, and help keep us sane. I am so sorry you are going through this with young children. Mine are 31 and 26, but they are still my babies. 

Sometimes, I have to just find a place to cry on my own. I cannot keep the sadness in. 

Kind thoughts,

Thank you for your reply. I am so sorry you are going through this too. We were quite open with each other to start with but I think my husband is understandably finding the diagnosis difficult. His cancer is very rare so the doctor is unable to tell us much other than they will do everything they can to try and give him as much time as possible. We are trying to keep normality as much as is possible for the sake of our children but it is so hard. 

Good to hear from you again. Initially, my husband tried to suppress the fear, pain and how poorly he was feeling. Somehow, that made it harder for me.He stopped eating properly back in December, and insisted he had Long Covid. It took me three months to get him to go to the GP. I was so angry with him. Bloody men. 

Hi,

I'm also new to this and so sorry that you are here as well. My husband is young and we have two children. We found out about his incurable cancer in April and have been on a whirlwind of treatment and appointments ever since.

We just found out last week that the treatment doesn't seem to be working which wasn't the news we wanted to hear. However, we have a great oncologist supporting us and we have to trust that he will do as much as he can to give us as long as possible together.

We have asked the medical professionals we have talked to not to discuss "how long" as we are trying to focus on what we have got rather than focus on time. We were due to go to away for a special wedding anniversary in August but have had to cancel that due to ongoing treatment and will keep our fingers crossed that we can take a break of some sorts to celebrate later in the year.

I too struggle with it all and mostly the sadness about the life we were supposed to have and now won't get to share. I have been really lucky to have connected with someone from work who has a very similar story to me although she thankfully had a happy outcome but talking to someone who understands has been so very helpful and got me through some very tough days at work.

It must be very hard with a young family but please keep talking and messaging if you need support. This forum has been so comforting to me because you do realise you are not alone in this. 

Sending you lots of love.

Hi, my husband also had a lump for a number of months before he said anything, I am upset that he didn’t say or do anything sooner but he is beating himself up about it and we can’t change it. You do think about the what ifs though.

Hi, thank you for your reply and I’m so sorry that you to are in a similar situation. We will find out next week if the chemo is making any difference and I’m dreading it.

We have not been given a ‘how long’ as yet as the cancer is so rare and they don’t know how it’s going to react to treatment. I’m not sure if we would want to know or not. I hope that they find a treatment that works for your husband. We to have a great Oncologist who has said they will do everything they can. 

I’m glad you have found someone who you can talk with who ‘gets’ it. It can be a lonely place to be in sometimes as I feel that I have to be the strong one for everyone.

It’s good to have this forum to find others who know what you’re going through. Thank you. 

I can echo everythng said on here, especially racer, my hubby also has a rare cancer and it has now spread to his lungs. Its still raw. Chemo may give him more time but may not work.

I did want to know how long when they asked, and maybe a year or so if chemo helps, maybe 6 months if it doesn't.

Its rubbish isn't it, knowing you're going to be losing your partner, sole mate, best friend. And feeling so helpless. 

I want to be positive, as he is being, but I am.findng that really hard. 

Thankyou for starting this conversation.