Right here right now I’m feeling quite mellow, let’s say cautiously positive, things could be heading in the right direction, maybe for the first time since my journey with melanoma began. I hesitate to be overly positive as we all know how cancer has a habit of not conforming

I’m receiving immunotherapy treatment on a 28 day cycle of Nivolumab infusions and have the second one coming up this week. I previously completed four rounds of combination ipilimumab and nivolumab combined infusions. I’ve been lucky to have experienced limited side effects so far and CT scan results in January showed no further growth and some reductions in the lesions in my lungs, so hopefully things are heading the right way.

I want to share an earlier part of my journey though, to perhaps give some hope to others who may be in a similar situation, and it comes from one year ago when I had a block dissection, removing the lymph nodes in my groin. It’s about recovery and regaining your life

When I was told I needed a block dissection as a way of aiming to curtail the spread of melanoma further, I was incredibly deflated. I’d read a lot about the after effects of this surgery and for two weeks I tried to investigate any other alternative. I feared how it would leave me, and worried about the risk of lymphoedema, especially after reading others accounts of how badly they had been affected. Realistically, surveillance was my only other option, and it just didn’t seem right to me to leave a cancer to grow, so in my case I reluctantly agreed to the operation. It was a big step for me.

After the operation I felt like my leg had been hit by a train, it was painful if I tried to move around, I was immobilized. I developed some lymphoedema, I had a very swollen knee and ankle. I had to sit with my leg raised and sleep the same way. Any time on my feet in one place, such as standing to cook or wash the dishes, would set the swelling off, so it had to be limited to just a few minutes. I used compression shorts but they seemed to make it worse.

I developed a very large seroma that was drained several times but refilled straight away. I was advised to leave it as long as I could, but a few days later it got infected and began leaking through the operation scar, and I was taken into hospital, where I spent six days.

It sounds pretty grim, and it was! But here’s the ray of light. From day one after the operation I was encouraged to get on my feet, a little at first and gradually more. It would have been easy to stay lying down but sometimes you just have to push a bit. Of course there’s pain, the leg felt very different, it still does, there was nerve damage and having a chunk taken out of your leg it’s never going to feel like it did before.

So my recipe, and to reiterate, it is my recipe, but for me it worked, is something like this.

Belief is important. Belief that you’ve done the right thing. Belief that you will recover.

Belief needs a plan to work. A set of steps (literally) to get to a point where you can function more normally again. Believe you will overcome pain even if that seems a long way off.

Rest is very important. The body needs to heal, so tread lightly and don’t take too much on, it’s a fine balance. Pushing too hard, too soon isn’t a good idea, you have to respect the timescale here isn’t short, but times passes quickly of course.

The body will respond though to what is asked of it. So, if you can, have some small targets, like walking to the end of the road, and when you’ve done that, go a bit further, set another target and so on. The more you do this, the more that strange feeling of an inflexible leg will start to soften, the more the limp will start becoming a step, and the leg will start to bend again. It’s immensely gratifying too. Psychologically it’s a great booster to start to feel you’re overcoming this hurdle.

As I’ve said in other blog posts, eat as healthily as you can too, especially as when mobility is affected, your natural exercise levels will decrease.

In this period of recovery it doesn’t mean swellings will go away or seromas disappear, they may be very long term, and in the case of swellings at least, recur. One year later I still get recurrence of swelling, but at lower levels. I still sit with my leg raised most times, maybe more out of habit than anything else.

My personal goal was to return to the gym, and I achieved that three months after the operation. At the beginning of those twelve weeks it seemed impossible but it happened and I’m not any kind of athlete, just an ordinary person. But I had the will to make it and the belief I could, as can anyone I believe, it’s just a question of the size of the task or goal you set.

I suppose my final piece of advice is be patient – results will come - maybe slowly but persevere, don’t be put off.

Believe you can get your mobility back and you have a better chance of doing just that.

Anonymous
  • <p>Hi&nbsp;<a class="internal-link view-user-profile" href="/members/hunter1966">Hunter1966</a></p> <p>That&#39;s very good news, I&#39;m very pleased for you. I&#39;ve been lucky enough to see improvement on my scans too, so fingers crossed for both of us! x</p>
  • <p>Sorry i didnt reply earlier in the year&nbsp;</p> <p>I am now on 9 cycles of nivolumab and my last scan showed improvement im now waiting for most recent scan results so fingers crosssed&nbsp;</p> <p>Good luck to you too x</p>
  • <p><a class="internal-link view-user-profile" href="/members/hunter1966">Hunter1966</a></p> <p>Hi Jane</p> <p>Thankyou for reading this and for getting in touch. It does sound like a carbon copy, not only that, but the timing is almost identical too! We are both in the same boat! I&#39;m very pleased that your immunotherapy is having a good response as well. I just worked out that I&#39;ve had my eighth round of Nivolumab last week, and I&#39;ve been pretty lucky to not be affected too much by it. Each CT scan result has shown some improvement, so I am hoping that can continue. I hope you continue to respond well and and that we can both dare to hope that we might be ok.</p> <p>Best wishes x</p>
  • <p>Tim90</p> <p>Hi my name is jane and i cant believe how similar our stories are&nbsp;</p> <p>I have stage 4 melanoma with spread in my lungs from an unknown primary tumour</p> <p>I had total removal of abdominal and groin nodes prior to starting treatment&nbsp;</p> <p>I managed the combined immunotherapy all 4 for which i have since found out is not easy so well done you aswell</p> <p>Ive now had my seventh dose of nivolumab which i have every 28 days and its working at tbe minute</p> <p>Thank you for sharing your story sometimes we neec to know we are not alone</p> <p>Good luck x</p>