coming up to 18 months since diagnosis - feeling very alone

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Following a misdiagnosis, a delayed follow-up appointment, delayed biopsy result and having made a formal complaint to the CEO of the trust, I was finally diagnosed stage 1b in August 2022 when I was 48. I basically lost 4 months due to NHS incompetence.

I had 5 weeks chemoradiation then 3 sessions of brachytherapy. I found the treatment to be utterly brutal but it worked.

MRI the following March showed the tumour had gone and I had 'complete resolution'. Since then I started and then came off HRT, had a bad infection caused by radiotherapy damage which made me really ill and took a couple of months to get over, and had some very light spotting but MRI scan showed all is ok apart from some minor scarring.

Today, physically I am doing much better. Bladder is much better and bowels are getting there. I've just started to see radiotherapy damage to vulva showing small improvements and I have no pain, itch or discharge. Still using dilators twice a week which is going ok. I will persevere. Still not having sex as I have zero desire plus it will just hurt. My husband is very understanding and has been amazing throughout. I am very lucky.

Emotionally, I'm not doing so well. I have a big family and I used to think we were close. I don't think that anymore. After treatment, which made me really ill, no one came to see us, let alone help us and I feel very hurt and angry with them. I've talked to them twice about this and nothing has changed, nor is it likely to. I have always been there for each of them when they've needed help and I'm the first person in our family to get cancer. I feel very lonely.

I work from home and have been very withdrawn but have been thinking about getting back into the world. Writing on this forum is part of that. I was thinking about finding a gynae cancer group near me to see if speaking to others in person might help.Has anyone tried this and if so, how did you get on? I would really appreciate any thoughts about how to restart life.

  • Hi  and welcome to the group.

    You've certainly been through a lot, both before your diagnosis and beyond, but it’s good to see that you are noticing physical improvements now. I would agree that the mental side of things is something completely different. 

    In terms of families, it can be a surprise to see how some people react to cancer. My family is very small so I don’t have any experience of having lots of family members potentially able to help out-there was no-one.  It must have been hard when you felt you didn’t get the help you needed, but if you’ve tried to talk to them about this and it hasn’t helped, then maybe it’s time to move on from it and accept they were not able to be there for you. 

    It’s difficult not to be angry about it, but it doesn’t help you. I was discharged after major surgery on the day of the first lockdown and got no help from professionals, and no-one was able to visit. No friends came even after lockdown was over. I became really bitter and angry about that, and it has taken a long time to come to terms with how that made me feel,  and accept it, but I have now. I’ve come to understand there is no point in dwelling in the past as it’s not helping me, and I am keen to help myself feel better about everything in general. I am grateful to be having counselling currently which is a huge help and is making me realise that what I’m feeling is a normal reaction. How I deal with it is something different, but I’m working on that.

    Do you have a good support network of friends you can rely on? I notice you work from home which can leave you maybe feeling a little isolated. I’m retired, but also housebound because I am disabled so I can feel pretty alone at times and completely identify about withdrawing from the world. I’m currently seeing what is available locally in terms of activities and groups through my occupational therapist which I’m hoping might be helpful. 

    There are no groups that I am aware of locally to me in terms of gynaecological cancer, or indeed any more general cancer support groups which I can access without transport-I have searched but found nothing. So 3 years ago I formed my own support group online which has been a huge benefit to me personally. However this is not something local, and I appreciate that’s what you’re looking for.

    If you give the support line a call-the number is in my signature below- they could direct you to any local support that’s available, and can suggest other help for you in terms of groups etc. The fact that you want to restart life is a very positive thing in itself, and I hope you can succeed in that. It’s definitely worth it.

    Sarah xx

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    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi Sarah,

    Thanks so much for your thoughtful reply and for sharing some of your experience, I found your words very helpful.

    I'm sorry to hear you've had such an upsetting time too. From others I've spoken to, it is quite common for friends and family to abandon people who are struggling in any situation, not just with cancer.

    My cancer nurse referred me to a psychotherapy team and I've been seeing someone for quite a while. This has been enormously helpful in facing the overwhelming bouts of sadness and anger I've experienced since my diagnosis in a way that will help me. So whilst I had a very rocky start with the NHS before diagnosis, I have received a great deal of help from them too. It's good to hear you have access to counselling too. I don't know what I would have done without it. 

    I don't have a network of friends. The behaviour of some of them has been even more astonishingly bad than that of my family and I've completely cut off from certain people as they were just hurting me at a time when I needed care and support to heal. I don't miss them.

    That said, I have a number of acquaintances that could develop into friendships but that feels a daunting prospect at the moment and I want to take things slowly. Relationships take effort and as my tank is empty for now I'd rather keep things loose. 

    Thanks for your advice about groups. I'll get in touch with Macmillan about that. Also, it's interesting to hear you set up an online community as I hadn't really considered that. It might a more gentle way to start interacting with other people again which is what I'd like to do.

    Thanks for your encouragement Sarah.

    Melanie xx

  • Hi Melanie ( 

    I have found it helpful to be able to talk to others, even anonymously in a forum, as it allows you to share with others who understand what it’s like to go through cancer and the aftermath-we tend to able tounderstand that you don’t just bounce back to normal after diagnosis and treatment, and things are a lot more complex than that.

    As I read your post, I thought about 2 good friends who I felt had abandoned me-never being in contact, not visiting and minimising what I had been through. Both, I felt, implied criticism of me having cancer in the first place-one of the things that can happen when you have a cancer caused by hpv unfortunately. I remember how hugely upset I was by their behaviour and I resolved not to continue my friendship with either of them. 

    I wasn’t nasty or rude, but I just explained I had felt completely left by them, I had felt so let down, and I didn’t want to continue with either of them. I just stopped contact altogether. One said it was my fault for not contacting her in the weeks after I had major surgery! I explained how ill I had been but she still tried to make me feel guilty. I decided I didn’t need that in my life, and if friends could treat me like that, who needed enemies? It was the right thing for me to do and I’m glad I’m not having to be concerned any longer what either of them think of me. 

    I’m glad to hear you are having therapy, and having the opportunity to talk through the anger and sadness. I have recently started this through the nhs and am finding it very good. Poor woman has to listen to my tears every week, but she is helping me to see everything from a very different perspective which I think can only be a good thing. I’m very hopeful of feeling very different about everything as time goes on. 

    I hope you can find ways to help you feel better and connect with others-it can be so important to our wellbeing. Navigating through a post cancer life is not easy at times!

    Sarah xx

    Community Champion Badge

    Cervical Cancer Forum

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm