This is a question I asked myself throughout my journey with melanoma, but particularly at the start of 2019 as I was half way through my immunotherapy course of ipilimumab and nivolumab combination infusions.

I recently finished that series of four combination infusions and I've come through it pretty unscathed. I have some very good results and I have now commenced on a single drug infusion programme with Nivolumab administered every 28 days for up to to two years. So far so good. 

My journey with Melanoma started in November 2017, officially. Of course it started before that, sometime in late 2016 when the blemish that became a melanoma first made it's outward appearance. 

I will create separate blog posts to describe the stages of that journey, and offer my thoughts on how to face the challenges, stay positive, be otherwise healthy and to accept and deal with the challenge of malignant melanoma. All based on my case of an increasingly worse outlook as malignancy manifested itself, up till the present time where the future is starting to look brighter.

But before going into that detail, I want to suggest taking account of where you are now, creating a pivotal point to consider how to go forward positively, and so this first blog post is dedicated to doing just that.

At this point, (early January actually) I thought, "Well this is a very strange and unsettling place to be so what are the do’s and don’ts to deal with it"?

You might recognise that gradual dawning of the reality of what melanoma can do to you, the panic about the future, are you as helpless as you think, or not? You have a challenge, do you have a will to work against it, how are you going to face it? What is the motivation to fight through it and where do you want to be? I'm sure these questions are common amongst anyone with malignant melanoma.

So, some key pointers – don’t look back, don’t ask unanswerable questions, accept that it is what is, because this is your start point, ground zero, where you’re at. Like almost anything you can’t really turn back the clock no matter how hard you try, undoing things isn’t always possible so don’t torture yourself with if’s, but’s and maybe’s. Instead it’s all about what lies ahead and what you can do now because you do have lots of choices.

Believe it or not you do choose what you do, or you should be the one making the choices at least.

What’s happened along the way to where you are now is your life history, good and bad, ups and downs, triumphs and disappointments, wins and loses, it’s all got you to this point where you’re at, and everything has made you what you are, but it is also pretty much irreversible, so put it down to experience, to life as it happens, and accept it is behind you now, move on to your next phase of life and think now really what your next steps are.

Control your life by your actions and thoughts, don’t be a passenger where the story is dictated for you.

And good luck to you

Stay with this blog for more insight into living well with melanoma and responding well to immunotherapy 

Thanks

Anonymous
  • <p>Hi&nbsp;<a class="internal-link view-user-profile" href="/members/lgrgdg90">lgrgdg90</a></p> <p>Thankyou for this, I did write a comment back to you last Saturday but it hasn&#39;t appeared, so I thought I&#39;d try again! I&#39;m pleased you&#39;re doing well and I think you make a good point about being active, very important I would agree. Activity should of course stimulate the body, prepare it better for managing treatment, help with recovery and just manage the daily challenge of being someone with cancer. I think activity helps you stay positive too, and if you then add diet you&#39;ve got a good combination for working through the challenge and recovery. I&#39;ll blog more about these areas and hope you find it interesting. Enjoy your travels and good luck for the future.</p>
  • <p>Hi&nbsp;<a class="internal-link view-user-profile" href="/members/lgrgdg90">lgrgdg90</a>&nbsp;Thankyou for your comment I&#39;m very pleased to hear from others in this scenario. I think one of the things you mention is a very strong key here - staying active. I will write a full blog post about this soon, it&#39;s very important, along with diet. I push myself all the time, throughout the whole of my melanoma story, and now through the immunotherapy period, and apart from the recovery from operations I have been as well as I was before this all started. &nbsp;Activity keeps me ticking, and ironically I&#39;m very fit and healthy in all other respects, I use the gym most days, swim, walk miles and generally am very active. I believe this must help in absorbing the treatment. I had a reaction to the first combined immunotherapy - an extensive rash and deterioration in eyesight. The rash went with cream, no tablets, and the vision restored itself. I&#39;ve had an ongoing cough that is better now, occasional eye issues, I get itches all over body, particularly scalp, I have spots on my face and chest, and my facial hair has gone white, ageing me 5 years! But that&#39;s it, I haven&#39;t been sick or ill so I feel very lucky.I worry too, I&#39;m not blas&eacute; at all and I did dread my scan results but they were good. Its only natural you&#39;ll feel like that but like me I think completing the 4 rounds of combination is very positive. I had my first single dose Nivolumab last Thursday. Keep in touch with the blog as it develops, I wish you all the best, and enjoy your travels.&nbsp;</p> <p>Tim</p>
  • <p>Thank you for writing your positive comments.I too have had 4 rounds of both ipi and Nivolumab and now Nivolumab only every 4 weeks. I try to stay positive and active and have side effects of joint and muscle ache as well as itching at times.It is interesting hearing other peoples opinions and attitudes. I feel this forum really helps me. I try to keep active and see friends regularly and also visit places with my husband. We go away in England for 2 or 3 days every month I haven&rsquo;t ventured abroad since stage 4 but maybe one day.I look forward to hearing your experience and tips as sometimes even though I try I have moments of worry especially near scan times.</p>
  • <p>Thanks&nbsp;<a class="internal-link view-user-profile" href="/members/latchbrook">latchbrook</a>&nbsp;I&#39;m glad you found the piece interesting and I&#39;m very pleased that you have successfully got through the melanoma and hopefully all is now well now. As you say, now we shouldn&#39;t worry about any what ifs either!</p> <p>I will give more details of my own experience shortly, it&#39;s just finding the time to write the pieces! My view in respect of what I&#39;ll write next isn&#39;t to reflect on how or why it happened, but how to address it when it was does, and being prepared and managing yourself through different surgeries, as well as immunotherapy, to keep positive and fit physically and mentally.</p> <p>I hope yourself and others will find it of interest and relevance</p> <p>Thanks</p> <p>Tim</p>
  • <p>Hi </p> <p>I&#39;d just like to say thank you very much for taking the time to write this.</p> <p>Having been diagnosed with melanoma in December 2016 I certainly agree with everything you&#39;ve said. Thankfully mine appears to have been removed by surgery but I am aware that it could rear it&#39;s ugly little head again at some point in the future. However, like you, I&#39;ve taken the view that there&#39;s no point in beating myself up over things I did in the past, like sitting in the sun, and no point about worrying that it might reappear in the future, because it might not and worrying about it won&#39;t change anything.</p> <p>I shall look forward to reading your next blog.</p> <p>x</p>