Wilma is a skin cancer specialist nurse, here to answer your questions about different...
I've been told my Macmillan nurses that everyone copes differently with their diagnosis, which I can understand.
I'm trying to stay positive after my stage 4 diagnosis but when a dark or worse case scenario thought enters my head I tend to suppress it. It's almost like I can't think that way, I don't know what will happen yet with therapy so I don't want to be defeated before I've even started.
I don't think I'm living in denial, I know what I have and we're still waiting to see what immunotherapy will do but I'm coping by not letting the dark thoughts take shape in my head.
My family are being really good, humour is a great leveller and has always helped us through some tough times. I don't have any close friends to share with so am hoping I can get advise and support from the group on my journey.
How does everyone else cope?
Hi familyanimal3, and welcome to the melanoma group. I have read your profile so I can see that you have started the ipi Nivo combi and that you are in that starting period where you will have good hope for the treatment working and that complete responder hope ahead of you, and there is nothing bad about hoping that, it does not mean you are in denial. Sometimes it’s good to bat the bad feelings away, but my own opinion is that it’s impossible to feel that you can always do that, and so I feel that at times it’s helpful to explore the what ifs in order to regroup. To acknowledge not necessarily dwell on them but to realise what your concerns are and to sort out what you can do and what you can’t do, and then concernrate on the can.
I had better now introduce myself, I’m a stage 4 Melanoma patient, well you can read about me in my profile, I’ve had the complete responder news to Immunotherapy and the its back again, and started Pembrolizumab again in June, so I know what that period of waiting to see how things go is like. Actually the first time, as it was in 2015, I didn’t know becoming a complete responder was a possible option, and my knowledge on cancer was restricted to my brother in laws bowel cancer, 18 years earlier when he passed away 2 weeks after his diagnosis, so I asked the how long question and got my will and power of attorney done. Then I started concentrating on not giving up and what could help me and looking at now.
Like you I had no close friends, but I had a good husband who was trying to avoid talking about it, and I found a good chat relieved the pressure. I found reaching out to the people I knew brought some really good friends, who have really helped with just being there for a distraction but also to have the occasional talk when I’m down, followed by some fun. It also taught me which people are not helpful. My closest friends now 3 years on not those who I have known the longest.
You can always say on paper here or in a blog or your own diary to get feelings out, or try the Macmillan support line, or find a local cancer support meeting or melanoma group meeting, and find and make those close friends that understand.
i have been finding the Wednesday tips helpful on here as well. I have had anxiety counselling in the past, and part of that was that you can’t ignore the elephant in the room all the time but you can acknowledge it there and feel differently about it. I’m well at the moment so it’s not affecting me at this very moment, but I’ve had my scan results yesterday and on Monday will get a phone call to advise what the MDT think going ahead, so at times I will want to just say how disappointing that is and at other times acknowledge I don’t want to think or talk about it until Monday. So to cope for now for me is get into the best mood possible to keep my head up, and for me that might mean a good walk in the countryside, eating healthily, and at times a chat about what is bothering me and get it in perspective that it isn’t happening today.
I do hope you find your way of coping wether it’s music, crafts, getting out and about walking dancing, a chat or lunch with friends, massage reiki a hair appointment, just knowing what will stop you thinking about it and who you can off load to.
What do you like to do and what are you looking to change if anything at the moment?
Hi I am also stage 4 with tumours near my kidney and also near my upper spine I have had 4 treatments with both drugs for immunotherapy and now on Nivolumab.My tumours have decreased but still have a long way to go.I understand how you feel but it gets slightly easier the longer you are in the situation.I talk to friends and my husband is my rock who always comes with me for appointments.
I try to do something everyday even if it’s just a local walk around the park.Today we are off to the Lakes and will pop into a garden centre for coffee. My friends have been great and I also realise other people have their own problems as well.
However waiting for scan results and waiting to see the consultant gives me stress .I tried counciling but it didn’t help as I was told just to talk and wasn’t given any strategies to help me.I try to eat healthily but my weakness is chocolate and certainly don’t deprive myself.
I find this site very helpful and it keeps you up to date with new developments Good luck and please keep in contact if it helps.
Hi KTatHome, Thank you for your response, it's given me a lot to think about.
I must admit I'm still all over the place at times and there was a gap between creating a log in and finally typing something. I have always been told I'm terrible at asking for help, and stubborn. Not the best combination, so that will be a learning curve for me and a headache for my family no doubt.
I always wanted to do yoga but never took it up, so I could look into that. I read somewhere about some classes not accepting cancer patients - I don't know if that's true but only one way to find out I guess. I love to read and cook, I have tried to be healthy with my recipe choices since first diagnosis and I still carry that on as much as possible. I enjoy walking, but my husband? Not so keen. While I'm healthy enough do it I'd like to more often, I'm sure I can persuade him to join me. I do love music but haven't really listened to my collection so much over the last couple of years, I really shouldn't let that slide as it can be so uplifting. One of the Oncology nurses mentioned as you do that I should find classes or groups near me for support, so that's something I think I would like to do.
You mentioned feeling well at the moment and so anxiety wasn't affecting you so much. I suffered from depression a few years ago and didn't want that to resurface. Perhaps that's why I'm trying to keep 'up' and positive. I have thought about getting my will sorted but haven't mentioned it to my husband yet, but it has to be done. The look on his face breaks my heart sometimes, he is being so strong and has been to every appointment and operation with me. I don't know what I would do without him.
Thank you again for taking the time to offer advice and guidance, I really do appreciate it.
Thank you for getting in touch, it really does help to here from other people going through the same thing. I thought the nurses were just saying that!
I'm hoping I can get my head round things as time passes, good days and bad moments are what I have now. We moved away from my home town 10 years ago and I've slowly lost contact with friends. But I have my husband who is an absolute star and my daughter who always seems to know what to say to pick me up. I just need to get back into being more active, good habits, while the going is good.
I'll keep coming back as I really have found this a positive experience, and I'll keep in contact.
Thank you and good luck to you too.
Hi familyanimal3 I used the “ in your area” button at the top of the page to find what was available in my area, I found a support group in the next town, and as I did not like being at home on my own during the day made an effort to go to the group. I found though I would listen to others anger, and not feel like opening up myself, or as they were local the conversation would deteriorate into things I knew nothing about. In a local council bulletin, and in the local freebie it mentioned walking for health, and so I started doing that when I felt well enough to do so, and it wasn’t too wet or too sunny. I found other cancer patients doing the same thing, but the distraction of the countryside, and the walking makes people talk less which is good and a cup of tea in a cafe afterwards meant you could open up as much or as little as you liked. Now I rarely go on the walk but I have stayed in contact with one of the other cancer recoverers and we go on our own walks and coffee breaks to more interesting routes.
The library is a good a good source of info on nearby classes, i fancy tai chi, but non nearer than 15 miles away, I have never done yoga but it’s a possibility for me, I have not heard of any not taking cancer patients but some might worry about us. An interest in music you might like Zumba gold, oops I’ve made a judgement there about your age, your probably too young for it but, I tried it and found it very frustrating, I was expecting people to be frailer than they were and it to be a bit slower. I got the Macmillan move more pack and it had an exercise dvd to do in the house and it suggested walking football or netball. As I used to be a county player many years ago I looked up Netball, and found a session, 10 miles away which I have done every week for 18 months, well every week I could, I miss the ones too close to treatment.
Oops husband says we need to go out for a walk, I hope you f8nd something you like
Hi KTatHome, I can see that looking into something local would suit me. I'd have to see if there is anything for the evenings at the moment. I may have to go part time or take time off, but at the moment I'm OK. I'm with you on the anger that may come across in group gatherings, I'm not angry but I do get very sad. I can understand the anger though. As for age assumption I was 50 when first diagnosed and am 52 now, but gentle exercise and walking have always been more my thing. In my younger days I did a lot of dance but walked everywhere so I have always found it more enjoyable. My daughter was a keen netball player before she had a knee injury. She loved it, and I was always amazed at the speed they moved around the court. I had heard of walking football and netball, my husband was thinking of taking up football again after many years away from it and walking was suggested.
Well done for keeping it up, I hope I can find something I like. I'll update you when I do.
I'll have a search around and see what's out there.
Thanks again for your time in replying.
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