Wife and sister terminally ill

Hi team BS it never ceases to amaze me how insensitive people can be when you are facing a bottomless pit. I think people just don't know what to say so in those circumstances should just shut up. I can relate a little to your feeling of helplessness my other cancer womb (mm was just not enough) has recurred just at a time when my brother was diagnosed with terminal cancer. Unfortunately my surgery was delayed over 3 weeks and in that time his condition deteriorated rapidly and went into a hospice. I was going to visit him today only to find out he died yesterday. It's often just as hard for the carers as life has the horrible trick of kicking you while you're down. My son lives in Kenya and I know he gets worried about me we do Skype regularly and use whatsapp. There are other forum sites that could offer you support like supporting someone with incurable cancer. On the positive side your wife is responding to treatment and there are members who are stage 4 and complete responders to treatment I'm sure one of them will be along shortly in the meantime big hugs and use this forum anytime you feel in need of support.

I was diagnosed with melanoma that has spread and, in one consultation, was given eighteen months. I am grateful that I pushed for a prognosis because everything that has happened since then has looked pretty good compared to that. It is  now four and a half years since that consultation and I am NED (No Evidence of Disease). I had immunotherapy, which worked for me. 

I think it may be worse for the close relatives, like my husband. As the patient, I became very focused on getting through the day-to-day.

Lots of people stepped up. My husband's work were amazing, giving him time off to accompany me to all the hospital appointments. Two of our close friends were incredibly supportive. I chose not to tell my family and my husband agreed not to tell his in case the information leaked across. I think that was hard on him.

Other 'friends' vanished and never came back. Some work colleagues said stupid things, mostly to make themselves feel better.

I wish you and your wife all the best and hope that the probabilities fall in your favour, as they did for me.

Hi Kate (papermoon) I’m just catching up on posts after having my daughter home from Japan, I’m so sorry to hear that your brother has passed away and that you might feel in limbo not having had that last planned visit. I know it’s been really difficult for you while you’ve been awaiting surgery and I wanted to express my condolences, and to hope that your improving after your op. 

It’s great to hear a positive story like this. Where had your melanoma spread to? 

I’m so sorry to hear about your brother and hope that your treatment goes well, thinking of you x

Hi Leighanne (), I’m another one of these people who have been told they were incurable and had statistically  less than 12 months to live back in 2015, so as I’m also no measurable disease and you have said your wife is doing well on treatment I’m also optimistic for her and yourself. When I started treatment on Pembrolizumab in 2016 Jimmy Carter the ex president of USA was in the papers a lot as her had metastatic melanoma which had spread to his brain and after gamma knife had Pembrolizumab and was no measurable disease and well when I was starting treatment so I as a patient had a good news story to focus on. There were some friends who are not good at communicating who when seeing me not very well and when I wasn’t feeling very positive who brought be even lower with comments of well we are all going to die sometime, or stories of other people they knew. So let me start again....

Hello Leighanne, It must be very hard for you at the moment with your wife and sister very ill, and I’m sorry not all your friends understand what your going through. It’s really good that you are trying to take everyday at a time, that’s a good way to cope, with the occasional looking ahead to plan in some nice stuff for you as a couple or you on your own to have a break from everything. 

Im glad you’ve joined the carers group as well as here (and the bowel group due to your sisters diagnosis) and I think the supporting someone with incurable cancer is a good idea, but judge for yourself as your wife doesn’t sound like she is terminal, but she is incurable but treatable, and I’m hoping there is still some hope of her improving and not feeling incurable, as that’s how today I’m feeling (although on scan results day I’m not feeling that positive sometimes). I will put the link in for that group below for you to click on. 

https://community.macmillan.org.uk/cancer_experiences/nearing_the_end/discussions

The carers group will know from the perspective of many cancers how you are feeling, and we have carers and patients connected with melanoma in this group to help with our experience to. I hope the opportunity to sound off as you put it makes things feel a little better for you, I know for me it does, in here or creating a blog on here for me to in a way talk to myself to get my thoughts in order if there’s any experiences that we can help with please feel you can ask, or just say how your feeling. When I was diagnosed my husband annoyed me a bit by being too matter of fact but he didn’t want to show he was worried, I think he took it too far and was edging on not showing he cared so we had a very long chat about how we both thought we could best cope with the diagnosis that was affecting both of us.

best wishes

I noticed Daisy rose, had read your post and from reading her profile, she’s a carer for her husband with metastatic melanoma that involved the brain (I hope I’m right in those assumptions) she might have some experience to add of how she’s coped emotionally as a carer. There’s also an information and support section that I’ve read here’s the link

https://www.macmillan.org.uk/information-and-support/coping/your-emotions/someone-close-has-cancer

Sometimes it’s good to feel that what your feeling is normal, that others have been through similar stuff. 

There is also a group called THE LGBT lounge, I’m putting the link below with the best intentions as I am not sure / Leighanne if you are male or female so I thought it might be helpful to mention it. 

https://community.macmillan.org.uk/cancer_experiences/lgbt/discussions

Hi Leighanne

At the time of that consultation, I had two substantial tumours in my armpit and a lump in my abdomen. I know that is less widespread than your wife's tumours, but be assured that immunotherapy (and targeted therapy is she is BRAF+) can work on brain mets too. 

All the best

Thanks KT. I have hospital appointment tomorrow for histology results fingers crossed its not mm. Then another appointment soon to discuss any further treatment. It does seem relentless at the moment. Tbh I feel better now he's actually gone I felt so helpless not being able to see him and the hospital and nephews ringing when I was trying to get over my op. And hearing about his suffering. It tuned out to be a much bigger op than I thought and recovery been difficuit. Hope you had a nice time with your daughter.