How do you move on after a cancer diagnosis?

This afternoon, I'm experiencing a whirlwind of emotions.

I had a wide local excision (WLE) before Christmas after a lump was discovered, which a biopsy revealed as VIN. The pathology confirmed it was cancer, leading to a series of tests. Ultimately, the recommended course of action was a posterior vulvectomy along with a bilateral groin lymph node excision.

I underwent surgery last month, and it has truly been a journey. The experience has been both emotionally and physically hard, especially with significant swelling in my groin. I encountered various complications, including having a catheter in for weeks, issues with infections, and now signs of lymphoedema at young age, which is far from ideal.

The recent news I received is somewhat reassuring: they found cancer in scar tissue from the last WLE, but everything has been removed with clear margins. Importantly, there was no evidence of cancer in my lymph nodes, which is possibly the best outcome I could have hoped for. It hasn’t spread which is amazing!

Right now, I’m feeling a mix of emotions—relieved that the cancer hasn't spread, yet overwhelmed by everything I've been through, which is still difficult to process. I have a follow-up appointment with my gynaecologist when she returns from holiday in two weeks, where she'll review me, and discuss the next steps.

I’ve been informed that I’ll likely have follow-up checkups and scans. I can’t help but feel anxious about the possibility of recurrence, especially after reading numerous stories that it happens so often. It’s challenging and frightening, but I know I can’t let fear control my life. I’m still in shock, and I realise it will take time to come to terms with everything. Is it normal to feel such a range of emotions—happiness, sadness, anger, and more? I am definitely considering seeking therapy to help process. Loved ones are happy that no evidence now of the disease, but I don’t think anyone truly understands that it doesn’t end after surgery has.

This experience has changed my perspective on life entirely. I find myself thinking about traveling more, trying new hobbies, and making the most of every day. It has truly made me appreciate that tomorrow is never guaranteed for anyone.

Moderator Jenn 3 days ago

Hello Allinsonfamily

I'm sorry to hear about all that you've been through. Undoubtedly, it's been a rollercoaster, and it's perfectly understandable that you're now having to adapt to a new normality, which can be challenging at times.

I know many people here will agree that being able to talk things through with someone can certainly help. It may be that there is a charity in your local area that provides specific cancer support, such as Maggie's or you might be happy to contact Penny Brohn, which provides services online to those impacted by a cancer diagnosis.

If you have a clinical nurse specialist, then chat with them as well. Many hospitals have access to a cancer psychology service but if there isn't one in your trust then the CNS may know what services are available in your local area.

As you've said, it will take time to process all that you've been through and how this may change things for you in the future. It sounds like you can see the positive in some of those changes, which is great. Hold on to those positive thoughts as they will certainly help during the more difficult moments.

If you'd like to talk with one of our nurses, I know they would be happy to listen and offer any advice, information and support they can. They're available Monday to Friday 9am to 5pm on 0808 800 4040 (excluding bank holidays).

I know it can sound like a cliche, but you've done so well to get to this point. Take things a day at a time and try not to look too far ahead, as this can make you feel more anxious. Keep being kind to yourself as well.

Sending you my best wishes,
Jenn
Cancer Chat moderator
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Offline WritingLola 2 days ago in reply to Moderator Jenn

Hi AllisonFamily,

I really wanted to reply to your post as I have been struggling with these same feelings now that my treatment for bowel cancer has finished. I’ve found it especially hard coping with the fact that for the people around me it seems to be over, but for me I know I’m just now in the next phase of monitoring and surveillance. I’m happy in so many ways to be getting back to a more ‘normal’ life, but the fear and anxiety are still so much a part of how I’m feeling that it’s hard not to feel more isolated in a way that I haven’t been before. Like you, I know I’m not the same person now, and it can be hard at times not to feel disconnected from my old life.

But, I have found counselling really helpful - I accessed this with BUPA through the MacMillan website and also a local charity. I would really recommend it - it helped to talk things through and I feel I have more strategies now to be able to cope with my feelings. I’ve been writing a lot anyway, as I’ve found that creating a space for myself where I can just get it all out if my head has been absolutely essential. I know it’s not for everyone, but something I did as a result of the counselling was to write a list of all the things I know - like the success of my surgery, the fact that I’m more resilient than I ever thought I was before. This really helped me to not get caught up in ‘What if?’ thinking and, as a list in notes on my phone, it’s a great reminder when I need it.

Wishing you all the best with things x
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How do you move on after a cancer diagnosis?

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