Hello Sunbeam70, I’m a mom of grown ups but it’s me who has the metastatic melanoma diagnosis since 2015. I am thinking you want to talk to someone in the same position as you, as you haven’t had a reply I thought I’d see if there is anything I can help with.
You haven’t done your profile yet, or given much info above, so I’m not sure how old your daughter is, whether a young child (which is rare I believe) or an adult, or how the melanoma diagnosis has affected you and her. I’ve found that sometimes a long post or completing a blog to get all that I’m thinking out a bit therapeutic even if no one answers, sometimes it’s a first step to getting things straight in my head.
A profile is optional but helps others when they are thinking of a reply, and helps me as sometimes I don’t want to repeat my whole experience. You can read mine by clicking on my user name, to complete yours you can click on your user name to add and edit.
If there is anything I or others can help with from their experience please press reply to ask any questions. There is also another group where you might want to reply to others posts or add your own, I will put a link in.
nice to hear from you. I have done a small profile, thanks for suggesting that. I will go on the parents with cancer forum, but would still talk with you if you would like.
Hi Suey, I am sorry I haven’t got back to you earlier, I’ve had a few days of being really tired and having a bad headache so I’ve been avoiding using my iPad. I saw you did a lovely post in the parents forum and did your profile.
What immunotherapy drug is your daughter on ? Is she having it as an adjuvant treatment (preventative)?
My daughter was on the Enco/Bini tablets. She now only takes one Enco 75 mg daily as she cannot tolerste the full dose. Her oncologist is of the opinion that it may be keeping spread away but it's looking like it's not enough to keep away from neck area where it's always been. Shes recovering well from an op she had on 26th April, but is now suffering badly from anxiety for fear that it will come back yet again. Days are hard as I expect they are for you. How do you cope with it all. I'm struggling and feel guilty as it is my daughter who as this horrible illness, but it's getting so hard because she has been given lots of life lines and shes got so much anxiety it's over taken her day to day living.
Hi sunbeam70, fear of things returning is normal in my opinion and we just have to find a best way to cope with that, gathering a tool box of ways to cope. My usual ways of coping were to keep busy and go for walks or play sport, facing a time of inactivity I knew I’d need another way to cope, so I did a HOPE course devised by Macmillan and the University of Coventry, but run by lots of cancer centres. That was just before the first lockdown, so good timing as all of a sudden I was one of the shielding confined to home for 13 weeks ! My cancer centre then ran an on line mindfulness group session for a few weeks.
I think I accept that there are going to be times when I’m going to worry more and then reach a point of getting fed up of worrying and feeling that I have to take back some control. Hence looking into mindfulness, relaxing isn’t really my kind of thing, I like keeping busy and the thought of doing nothing and having the thoughts that you wanted to ignore flood in isn’t relaxing, so it’s something I needed to look at. I’ve been looking for a Macmillan blog that had info and links, I can’t find the one I wanted but I did find the one below.
