A year on, whilst in remission, but every day is a struggle

Hi,

I hope I dont ramble to much here lol, but I know exactly how you feel. I was diagnosed July 2019 with womb cancer. Luckily stage 1, but it was grade 3 clear cell cancer with is rare and aggressive with high risk of re-occurance. Had operation, chemo and RT. Treatment finished the beginning of March. I've been told 30% chance cancer will come back within next 2 years.

I was really poorly throughout chemo and had to keep being hospitalised. I had neutropenic sepsis twice, had to have blood transfusions, it affected my liver plus numerous other complications. I was that ill I couldn't complete my chemo as that was becoming as bigger risk to my life than the cancer was.

However, on the whole I coped emotionally well with the diagnosis and treatment. I think that was because diagnosis was very quick so didn't have time for it to sink in. I then had my operation, then 6 weeks later I had chemo, then straight to RT. Because I was so poorly with the chemo, all my strength was used up to just get through it and although I felt really low, that was more to do with how ill I felt rather than the cancer itself.

However, now I'm feeling well in myself, my metal state has deteriorated. I feel like everyone thinks I should be back to my normal cheery self. If I try and say how scared I feel about the cancer coming back, they tell me not to think like that, to stay positive, that I should think I have a 70% chance of it not coming back instead a 30% chance it is. 

I feel stuck in the moment and to scared to make any long term plans. I feel lonely and although all my friends and family were brilliant while I was ill, I feel they have all moved on and that they think I should move on too and put it all behind me so I've stopped talking to them about it.

When you are having treatment, you have the medical team around you, then it just stops which feels very lonely too.

Covid 19 has not helped. Like many of you, I was put on the highly vulnerable list. I have a fantastic husband, but this has been a very lonely time not seeing my friends and family. 

I returned back to work 2 weeks ago, working from home on a phased return. This is also causing me stress. After being off for 10 months, I can't remember anything. My work are being very good but I am finding it very stressful working on my own without the support of my team by my side.

My whole life is now consumed with cancer and dying. Every time I have an ache or pain I worry its the cancer. My whole personality has changed. I used to be happy go lucky and loved a laugh and always looked on the brightside. I am now just putting on a brave face but its getting harder and harder to keep it up.

I should have seen my oncologist end of June for my first 3 month check up, but due to covid they are behind in their appointments. I called them 3 weeks ago and the oncologist secretary said I should have had appointment and will chase it up. I've heard nothing. Now I can't get anyone to answer, only voicemail. I've left messages but no one gets back. This is also causing me so much stress.

I called my GP today. They still not seeing patients but I had a telephone appointment. I was sobbing on the phone about how I'm feeling. The doctor told me to be positive etc etc. Not what I wanted to hear! I asked about seeing a councillor to help get things into perspective. I was told there is months and months of waiting lists so they have put me on anti depressants. But I don't think I need them. I just want to learn how to live with cancer and someone to talk to.

Sorry this is so long and a bit disjointed. I hope it makes sense lol. xx

Hi, I do understand how you feel. My last scans showed no cause for concern, I finished chemo-radiotherapy last August. 15% chance of it returning particularly within the first 2 years. Every pain I have I wonder if it’s cancer related & has me rushing to google my symptoms. Like you, I have most people saying’ you’ll be ok’, ‘it won’t come back’ etc. They’re trying to be helpful but it doesn’t help. It’s always there in the back of your mind. I do think this will probably get easier the more  time passes. My Oncologist referred me to an Oncological Psychologist. The wait was about 6 weeks. Id ask if you can be referred. As for not getting hold of anyone at the hospital I’d get in touch with the Patient Liason Service (PALS) at the hospital and ask them to help you. Failing that I’d put in a complaint, that always speeds things up. X

Dear Lozra,

that all makes perfect sense. You have been through so much in the past year, I am sorry to hear that you are not getting the follow up care that you need and deserve.

I too feel like yesterday’s news. People now tell me how well I look and don’t ask me how I am. I told very few people about my diagnosis, really only those that I knew would be supportive and just a few colleagues at work. Nobody really noticed I was missing in action as it all happened during COVID-19. 

I started back at work 5 weeks ago, also from home on a phased return. It wasn’t so easy settling back in and I was only off for 8 weeks. 

It wasn’t until I started feeling better physically that there seemed to be the space for the emotions to make an appearance. I have spoken to the Macmillan helpline and a telephone counselling service that I can access through my employers. I also had an assessment pre-operatively with a counsellor at the local Macmillan centre to set up services if I needed them.

I find this forum and being with people that truly understand what it is to have a cancer diagnosis and all that goes with that comforting, no one else can really understand what that is like.

I started the Macmillan Hope course a couple of weeks ago, I miss the option of doing in a group setting as it is all on-line but that said it is excellent. I can recommend it and it may support you as you move forward.

sending you warm good wishes and a big virtual hug.

Honey

Hi Honey,

Thank you so much for replying to me. It really does make me feel so much better knowing I'm not the only one feeling like this. 

I'm also so glad I found this forum, just writing it down yesterday made me feel better. 

I have spoken to my manager this morning and we also have a work based counselling service which they are now sorting out for me. Plus I am going to call the Macmillan helpline to see what help there is for me. I'm going to taking everything going lol.

Warm wishes and a virtual hug back :) 

Lozra

Hi,

Thank you for replying. I really appreciate it and thank you for the advice.

Once I finally get my appointment I will ask about the Oncological Psychologist, thank you for telling me about that. 

I agree about peoples comments and I know they are only trying to be kind and helpful. My husband has said he finds it hard knowing what to say to make me feel better. I've tried to explain that nobody needs to say anything, just listen to how I'm feeling and give me a cuddle. That's all I need sometimes. When people tell me to "be positive" etc., I feel that my feeling are being undermined. But I also appreciate that's what I would have said to someone before having it myself. 

I am hoping the worry of reoccurrence will fade with time. I think it's just a bit raw at the moment.

I will keep chasing my appointment for another week as I do appreciate they are behind with their appointments, but I will then contact PALS if I still have no joy.

Thanks again, take care

Lozra

Hi Lozra.  I recognise that feeling of being alone after the end of treatment, and needing a little reassurance. I had womb cancer and surgery late 2017 however I didn't need to have the additional ordeal of chemo and radiotherapy; it sounds like you had a real tough time.  After learning that my treatment had finished I was relieved of course but I still felt a bit misunderstood, and like you I felt that my stress was being brushed aside.  I went to a Maggies centre and they were fab.  Is there one near you?  I had a really bad day feeling miserable and I went along to Maggies and one of their people just sat and listened sympathetically while I poured it all out.  The other place that was similarly sympathetic, before I went into hospital, was a Macmillan drop-in centre near where I live.  Sometimes you just need someone to hear you out.

I think after a big health shocker like this we can't win with some people; I was a sportswoman pre-op so I worked very hard post-op to regain my fitness.  The thing is now, I look so well that everyone has forgotten there was ever anything wrong with me, it is never mentioned and I no longer get any allowances made.  That doesn't usually trouble me but now and again I think I would like someone to acknowledge what I went through.

Anyway, lots of luck, try Macmillan, Maggies, also The Eve Appeal have a helpline and in my experience are very caring.