I just don't know how to think/feel about my melanoma

Hi , I think many of us go through the feelings that you’re having and it takes a while to come to terms with those feelings, and be able to live with the uncertainty that so many cancer patients live with, will the cancer return? and how emotionally resilient will/can I be. The next thought sometimes is what can I do to help with that emotional resilience. 

The guilt/luck thing, yes I’ve had that to, I was told I was incurable, became a complete responder, even after a recurrence in my nodes again, it’s still not in any major organ and Pembro with minimal side effects so lucky compared to a lot of others that we don’t have chemo but have immunotherapy that can be something that they don’t yet call a cure. Guilt that in the 4 years since my diagnosis a friend who was in remission for breast cancer and was a good support to me passed away, and my cousin who had a diagnosis for bowel cancer and passed away within a few weeks. The uncertainty that some people with no cancer experience suggest can just be swept away, it’s gone nothing to worry about. So why is it so difficult to feel confident to plan ahead, or feel positive all of the time. 

Stats, the thing is what do statistics mean, they don’t tell you what will happen in your own case, but sometimes they can help or hinder in how positive you feel about your situation or make you appreciate what your fighting against. I don’t want to make my ramble longer than yours, so let’s just say I think I get what you mean. 

Finances are a bit more factual, PIP if your dr feels you may not survive for 6 months a Macmillan welfare adviser can visit and get PIP up and running very quickly, when I was first diagnosed and feeling really unwell that was set up for me, and I stopped it when I was a complete responder and off treatment and my prognosis now is one of likely to have years ahead. But the Macmillan help line can put you in touch with Macmillan financial advisers and welfare advisers, and talk through what help you could tap into regarding debts, day to day expenses. 

Disability, well yes on equality and diversity forms yes I’m disabled, but for a blue badge etc no I’m not. What is wrong with ticking that box that might protect your rights at work. 

In the Life after cancer group there is often talk about a post traumatic stress after a cancer diagnosis often felt when the immediate danger feels over. There’s a paper by Peter Harvey that is often linked for people, that many people identify with I will try and find the link. Dr Peter Harvey  paper.

Emotional support for the uncertainty is what a lot of people need help with, I get mine from my friends who have had a cancer experience, rather than friends who haven’t, but I have made those friends since my diagnosis as I had no one in my circle before hand. I got a lot out of coming on here finding others ahead of my own diagnosis, and from going to the Melanoma Patient Conference (it’s in June each year) My hospital team as they have a remit for psychological help as well, let patients know about local groups or centres. Near my hospital there is a Maggies centre that you can pop into for a chat, and they do therapies there, there’s also another cancer help centre that does expert patient courses and Hope Helping to Overcoming Problems Effectively, I’ve been meaning to do one for a while and finally start one on Tuesday. 

If there’s any help you need I might be slow at replying sometimes but I am listening and going through similar thoughts. 

Hi

I totally get how you’re feeling. My situation is similar except I had a full groin dissection. I’ve been on adjuvant Pembro for about 7 months now, and I’m working full-time.

I read everything available and want to know all the stats there are - I’m irritated there hasn’t been a more recent data cut from the Keynote trial that is most applicable to us! 

I think I’ve convinced myself that this will come back at some point, but I tend to think the worst and then I can be pleasantly surprised when it doesn’t happen. The bit that is more real, is the constant medical appointments, and that’s not going to change for years. I’ve had no side-effects from Pembro, so can almost forget about it most of the time, then I’m smacked in the face with a whole load of appointments and needles again. I’m starting to find that harder to deal with.

 I was really worried about finances at first with all the time off I had for surgery, but now that phase of treatment has passed, it’s not an issue. I’m lucky that my work have been fantastic letting me have the time for medical appointments and it not affecting my pay or sick leave, but I do feel very guilty about all the time out. I’ve just got to the point where I’ve requested some counselling through occupational health - which I’ve been resisting for ages because it’ll be more time out, but I’ve chosen to do it through occupational health rather than my gp/Maggie’s/Macmillan because I feel it makes the time off more legit somehow. I know it’s ridiculous, but it really bothers me!

You have that classification of a disability forever now after diagnosis - regardless of your current disease status. Get your free prescriptions sorted out (I’ve not needed a single one since I got my card), but there’s little other practical benefit - however that protection of your rights is important, so tick the box!

I struggled to believe this myself, but you might not have any side effects from treatment! And if not, then do all the extra shifts you need... at least your not permanently committing to longer hours in case things change in the future. 

It’s a lot of stuff to come to terms with, and I totally get it. You will be up and down. While I’m generally okay, my resilience for everything else has definitely taken a knock - and I’m less inclined to tolerate other people now.

Best of luck with your treatment. X