Melanoma

A support group for anyone affected by melanoma to come together, share experiences, and ask questions.

Living with the fear of recurrence or metastatic spread

Carjon19
Posted by

Hi, I’m new to this page, 7 months post surgery, WLE & SNB  for Stage 2 Nodular Melanoma, I feel like the shock has just slipped and I’m gripped with fear all the time, I haven’t been able to speak to anyone, I don’t know where to go or how to start, also feel stupid that I’ve got through the difficult part and now I’m in pieces, did this happen to anyone else x

MoiraA
Posted by

Hi Carjon19

I believe lots of people react in the same way you have done. The important thing is that you have realised that it is affecting your quality of life and decided to do something about it. You have taken the first step by posting here.

My main problem was a phobia of doctors and hospitals. My GP helped me access talking therapy, first from NHS and then, later, by recommending a psychologist in the private sector.

I also discovered that my work gave employees access to a counselling service.

If there is a Maggie's centre nearby to you, they specialise in helping those with cancer.

Is there a Macmillian centre in your local hospital? Would they be able to point you in the correct direction?

All the best

Moira

KTatHome
Posted by

Hi , congratulations that you made it through the difficult part. At a guess I’m thinking that this is a blip in positivity, which sometimes comes at Christmas and New Year because thoughts are turned to planning further ahead, and the insecurities can creep in.

long post warning : some personal insights and some links further on.

I’m in a different but yet similar boat to you  in that my diagnosis came when it had spread and I had to come to terms with being told I was incurable. I was then put on immunotherapy and became a complete responder, no evidence of disease and although drs don’t like to say cure often for complete responders they will be cancer free for years and can have a normal life span. In my first year off treatment I felt the joy of beginning to think of being normal again, building up my fitness, volunteering for Macmillan and thinking of looking for a job again as I’d taken early retirement. Scans and anniversaries of events were my trigger points but you learn to anticipate when things will become more difficult for you and to plan ahead the distraction things that you used to cope through those previous difficult times. It sometimes helps to truly talk out what it is you’ve been through, the fears that you had. 

I’m hoping that although you say you’re gripped with fear all the time that this is a new thing for you a blip to get over. I’ve been in a few blips in the last 41/2 years, I’ve accepted that I can’t be positive all the time and that it’s much easier to be positive when things are going well. I have met others in person who have had a cancer journey and who I can talk to knowing that they understand. Those new friends were much better than any longer terms friends (who either couldn’t imagine, or were over sympathetic). I’ve used this group, and a personal blog on here to get things out of my head. I don’t know what you feel like right now and exactly what your fear is as I think we all have different things we worry about. 

The Life after cancer group often has a theme of people worrying about a recurrence and  The Transcript from Peter Harvey is often quoted it helps people understand the sort of trauma they have been through.

I like ’s suggestion of Maggies and the Macmillan information, I’ve popped in for coffee at a Maggies they gave a very warm welcome and have people to talk to there and stress busting activities, (busting seems the wrong word when the activities seem more laid back like Pilates, art, meditation  etc) The Macmillan info pod at my hospital has lots of info of groups to meet and talk, courses for coping with the uncertainty. You could try the in my area button on here to find things as well or your local library. I have also had counselling like Moira mentions. I also like to look at the coping section 

https://www.macmillan.org.uk/information-and-support/coping/your-emotions

I’d say your blip is very normal, and if anyone here can help we will. 

KT 

What is a Community Champion?

You can call the Macmillan Support Line on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.

Carjon19
Posted by

Thank you so much for your advice- yes the fear is new, it’s just washed over me, I think that part of my problem is that I worked for a Skin Cancer Consultant Surgeon for many years so I am aware of all the different paths this disease can take and how quickly a positive can become a negative and I don’t know how to unkow it, if that makes sense. I thought I was coping well but I have just fell to pieces, I have a Maggie close by so I think I will take both your advice and call in, I will also look into the reading you recommend- thank you again, I wish you positive prayers on your journey xxx

KTatHome
Posted by

That must be difficult, but any experiences you remember, don’t have to be yours. I’d be interested to hear how you get on at Maggies, I hope it gets you back in your positive space again. 

KT 

What is a Community Champion?

You can call the Macmillan Support Line on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.

papermoon
Posted by

Hi Caron 19 I was stage 2 nodular in 2015 and think what you are describing is more common than not. Mine was also ulcerated and knew that this made it even more likely to spread. 9 months later I was diagnosed with womb cancer completely unrelated to mm so dealing with that kind of took my mind off it though it's not a distraction I'd recommend. I think initially you are busy dealing with the diagnosis and treatment and the adrenaline kicks in, it's only when you have time to relax does it really hit you. As kt says Christmas is a time for looking back over the year and new year looking forward to the next so a lot of emotions are involved. Some people find counselling helps but it does get easier over time and you'll find you think less and less about it.