Rare and aggressive

Hi N99, so sorry for what you're going through. I don't have any good advice but didn't want to read and run. Somehow, you will find a way through. My daughter finished two years of treatment for a rare and aggressive cancer in February. I was beyond devastated when she was diagnosed. But her end of treatment scans showed 'no cause for concern' . We know we're not out of the woods yet but were just beginning to wind down. I know I had put concerns about my husband's health on the back burner while daughter was having chemo, radiotherapy and three surgeries. Husband was diagnosed with vascular dementia in May.

I'm still reeling and trying to come to terms with this. Can't think too much about the future - if you worry too much about that, it stops you enjoying today. That's my only advice - I know we all have to plan for the future, but really do try to 'live in the moment'. On days when your wife has no appointments and feels well enough, do something nice together, even if it's only going to sit in the park and have an ice cream or watch a film together.

Sending love and strength. xx

Thanks for responding Cherry, I appreciate it.  Well, apparently the trial by GSK has been postponed so that no longer features in the plans or hopes, so it’s down to Chemo to extend her life by a few months. The chemo apparently is only effective for 25% of patients with Carcinosarcoma, so not looking good. 

you life sounds as stressful as mine. How are you doing?  I’m new to it all. 

I’m really sorry that you and your wife are going through this. I know in these situations there’s not many words that bring comfort but I’m sending all my love. 

It’s good you’re reaching out for support on the forum, and I hope that you and your wife’s family and friends are also able to support you during this time. There’s a lot of unknowns and uncertainty but I think Cherry2 offers wise words in trying as much as possible to focus on now, rather than thinking too much about what might be ahead. However, it is also completely natural for your head to go there & for those worries to rush in so be kind to yourself when you’re feeling very overwhelmed. It’s common to feel anticipatory grief and it’s a lot to process. 

I’m wishing you and your wife all the best as she starts chemotherapy, and hope that she’s part of the 25% who respond well to the chemotherapy xx 

Thank you. It’s early days, but somewhat overwhelming. The family are starting to visit from far and near. That brings its own stress!

I do agree about family visits ... much as we love to see them, they haven't had the time I've had to get used to the changes in mu husband and things can be awkward, to say the least.

I'm doing ok, thank you. At the moment, I'm still able to get out for a couple of hours, my husband is ok as long as I leave him drinks and snacks - I go to an art class and a walking group. I'm even able to get out for the day once in a while, his twin sister will look after him.and he's happy to visit her.  My children and my church are a great support, I know I'm very lucky in many ways ... but it doesn't stop you feeling totally alone sometimes, does it?

I'm so sorry that the drug trial you were hoping for has been postponed. Sending love and strength to both of you. x

Hello N99

I am so sorry to hear about what you are going through. It is a club no one wants to join, and so hard to get accustomed to. It's probably not of any help but I too share the feeling that every time something changes in your partners condition I feel like my feet are slipping from under me. 

My husband was diagnosed stage 4 metastatic bowel cancer which had already spread to other organs. This was a year ago and he has had almost all of the treatment options available.

He has had chemotherapy for more than a year and the results were good for most of the time. I hope your wife has a good response to the chemo, the treatment side effects were well controlled by the medical team.

We try to have a few nice things in the calendar and my husband meets up with friends for coffee regularly. Little things can bring some relief. This group is a comfort and a safe place on difficult days. 

Sending hugs x