Inoperable Secondary lymph node cancer

Hi , I have had that feeling of being on borrowed time, during my cancer experience, for me I was told that it was likely that I might have less than 12 months, but that was back in 2015, and I think my cancer type was different. My cancer was metastatic melanoma, I know that you are also in the anal cancer group, I don’t know what type of anal cancer you have, I’m thinking it probably isn’t the rare anal melanoma type otherwise you might have different treatment. 

Because my cancer is different I can only say I have gone through that borrowed time feeling and how I felt and coped, but my treatment was not chemo and radiotherapy but was a targeted therapy drug. I too could not be operated on as too many nodes were affected in my pelvic and abdominal lymph nodes. I started taking a targeted therapy drug and I was told it would only on average last 9 months, but for some had lasted a few years. For me at 9 months it spread to my ovary still not a critical place, but a new treatment had been approved a few months earlier that I was able to move onto. That new drug worked so well it got me to a point of being clear which was more than I could ever have hoped for. I had a year of no measurable disease and off treatment before it came back again, and I’m still on treatment now until March but I’m currently for the second time no measurable disease after although I did have surgery to make it so this second time as one node did not respond to the drug, and they decided that they could try it laparoscopically. 

I don’t know if you have asked the questions of your team as to how effective they think your treatment will be the best and worst case scenario. I did when I thought there was no other treatment available and got my will and power of attorney written and came to terms with trying to enjoy each day for however long I had. I concentrated on trying to eat more healthily and to walk a bit more to give my immune system to fight this thing. As I was told my cancer was incurable, I joined the group for incurable cancer, it has people in there coming to terms with being told they are incurable and how to live life as best they can in that time and for many it has been for years. I no longer go into the group much as my position of having no measurable disease although sometimes gives a great inspiration to others it can also bring a feeling of disbelief, awkwardness, disappointment, anger, jealousy lots of emotions all rolled into one. 

When I was off treatment I was convinced I’d cracked it that like a small percentage of other people who had been complete responders I thought I was no longer incurable. I was so disappointed when it came back, but I’m currently aiming towards getting off treatment again in March. I don’t want to give anyone false hope but sometimes any hope is better than none. Although my cousin bravely passed away in May from cancer having fully come to terms with everything before her end and passed peacefully. So when my time comes, as off course it does to everyone, I hope I can say I’m ready now and I’ve had a good life. 

There is a whole section on coping with emotions in the info and support sections that I found useful as I felt numb and data like at first, here’s the link. https://www.macmillan.org.uk/information-and-support/coping/your-emotions/dealing-with-your-emotions

You may find it helpful to ask if there is anyone in the anal cancer group that has had a spread or cared for someone with a spread, to get their experiences, or you may want to talk to the Macmillan support line about treatment options and feelings. You are lucky that it is only in your nodes at the moment but unlucky that it’s inoperable, I am unsure as you don’t say and I haven’t got the personal experience of your cancer wether you can become no measurable disease again, I know you said radio therapy hasn’t worked, and that must be terribly worrying for you. It helps to concentrate on just the moment sometimes and if right now you feel well. To not look to far ahead but plan some enjoyable times. There is also a group called emotions and The room that you might want to browse and look at. 

I don’t know if my experience helps and if you want someone to listen to how you feel I’m here as well. When I have felt I need to get my feelings out but I don’t want a discussion I have also done a blog on here. People sometimes write a comment but rarely and sometimes you don’t want people to say sorry to hear about your cancer, or suggest that everything will be ok, sometimes I have just wanted to wallow, sometimes I feel it’s a necessary part of getting it all out so that for me I could start thinking more positive again. 

Best wishes