New Diagnosis

Hi , I am sorry you’ve had to join us here. It was 5 years today that I had my biopsy and was waiting for results of what they thought might be Lymphoma, the biopsy came back as melanoma that had spread. I suppose I had the advantage during that first wait that it was suspected cancer they weren’t saying definitely and I was feeling ill and any movement forward I saw as a positive to move forward with treatment. The time waiting for a treatment plan went very slowly, like you I was then told it was inoperable but it was treatable. In those 5 years I suppose I’ve had a lot of waiting for biopsy and scan results. Mostly I’ve learnt to park any concerns until nearer the time. To be kind to myself and to acknowledge that there will be trigger points when the what ifs try and take over your head. A lovely dr at one stage said when my treatment had to be halted for a week to concentrate on the fact that I felt well, and that was good advice. It sound like with you saying that you are so active that you might be feeling well to, which will mean that today you are ok, and tomorrow is not yet here. My husband and I struggled a bit each trying to be brave for the other person, until we sat down and had a long talk. To approach talking to him I actually looked at a section in the Macmillan information and support pages, talking about cancer. 

For the wait, well you probably have your own way of dealing with waiting, perhaps in the past you’ve waited for exam results. Mainly people like to keep busy and concentrate on something else to park that uncertainty of biopsy results until perhaps the day before the results are due, although those thoughts might creep back in every week until they are due. I wonder if you might find these pages below helpful. I wasn’t able to look up while I was waiting what treatment I might have so I concentrated on how to cope with uncertainty. 

https://www.macmillan.org.uk/cancer-information-and-support/diagnosis/waiting-for-results

https://www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help

You mention that your husband is working from home and that it’s a bonus, (mine is to), it can be great that he’s there but equally more difficult to have some alone time perhaps ? and sometimes alone time is not helpful as that’s when the what ifs can creep in. My way of coping was normally to be active and that has been difficult during lockdown, but we bought an exercise bike. My local cancer centre has been doing some courses virtually so I enrolled on a mindfulness course but some people use apps on their phones. When you specialist nurse contacts you they have a remit for psychology support to and will know what’s around locally to help you.

In the hardest times I’ve tried to think of 3 things that I am grateful for or that I’ve been pleased that I’ve achieved and to do this every night before bed to have something positive to think about, some people, keep a journal for this. At first I kept a worry list it was a bit negative but actually can if you are worrying a lot can be used to help reduce the amount of time spent worrying. It was through some counselling I had when I was told I was incurable. It’s funny how so many things on that list were things that I had no control over, and only a few that could lead to an action point on a todo list.

I think I’ve wittered on enough for now, good luck with your waiting, I’m happy to be a listening ear during your wait.

Hi KT, 

thankyou for reaching out to me, I will look at the links you sent. It’s difficult to know what to think as my consultant hasn’t said a great deal I was too shocked at the diagnosis to ask if there is any treatment etc. Having difficulty sleeping tonight so it was good to hear from someone thank you