What were your waiting times?

Update 5 weeks and 2 days after second LLETZ:

 

I've still heard absolutely nothing and I'm really fed up of people asking me if I have results yet and then responding that it must mean it's good news as if it wasn't they would have been in touch by now.

 

It wasn't good news last time and it took them 10 weeks to tell me I had cancer. They said it's because it is a difficult cancer to diagnose.

 

I don't really know, what that means, but it does mean that I'm getting really frustrated with people's responses.

 

I've even had, two people who I don't really know well and who don't know one another congratulate me on getting the all clear. I have no idea what has brought them to that conclusion but I didn't correct them. What is the point. People see and hear, what they want to.

 

I stopped taking my pill on Saturday for my 7 day break and I haven't started on my period yet, but I'm guessing I'm pretty hormonal right now and that has a little to do with today's rant.

 

I'm just so fed up of waiting. I really believed that this time round I'd have the results within 4 weeks. Two weeks at the hospital lab, two weeks at the specialist lab, bam, here's your results! Wishful thinking?

 

Since being diagnosed I have also diagnosed myself with breast cancer (now ruled out), bowel cancer, anal cancer, stomach cancer, bladder cancer, ovarian cancer, uterine cancer and a brain tumour. If that isn't health anxiety I don't know what is.

 

Every twinge, every niggle, every thought.... It must be cancer. I've never in my life experienced health anxiety and logically I know it's highly unlikely I have any of these cancers, but my mind still keeps going into overdrive.

 

From what I have read, this is fairly normal for anyone with a cancer diagnosis. So, I'm doing my best not to feed it. I've decided not to mention anything to the doctors right now as I know I am just following a normal behaviour pattern and that in time it will pass.

 

I would really just like my results though. The longer I wait the more anxious and down I feel. 

Hi lemon lavender,

Sorry to hear you're still waiting for results. I hope they come through soon.

I can empathise with your health anxiety. I've been through a few other cancer diagnoses in my head too. Currently I seem to be obsessed with skin cancer. I'm just hoping the anxiety will pass with time.

I'm trying to stay away from the forums now as it's much better for my mental health. The support here has been amazing through my diagnosis but now I'm at a stage where I just need to get in with life again and stop thinking about it every second!

I have my next appointment through, which isn't till October. I'm trying to focus on the fact that they must think I'll be ok leaving it that long. I'm also working on my general health. I've improved my diet, started exercising more and getting some time away from the children. Who knows, hopefully it will all help.

I keep checking in to see how you're getting on. Thinking of you and sending love,

Xx

 

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Hi Dreamland,

 

I had noticed your absence and thought that might be the case lovely. Sending you love for the next few months. You have got this! Xxx

 

I decided yesterday that I am going to get a referral for counselling. I'm really struggling with everything and having some really ridiculous thoughts that I know I wouldn't be having if it wasn't for the constant uncertainty I find myself in.

 

I hope to hear wonderful news from you in October xxxx take care and smile often xxx

Update 6 weeks after 2nd LLETZ:

 

My period came on the Wednesday. It has been almost black and with big clots. Google tells me this is okay and nothing to worry about. Apparently, the darker the blood, the longer it is taking to leave your body, and the longer it takes to leave your body, the more likely it is to clot on the way out. Learn something new every day!

 

It's been a heavier period than usual, but not as heavy as my last one (a few days after my LLETZ).

 

Another Friday oncology MDT meeting has gone by with no phone call from my macmillan nurse to update me.... Which means another week of waiting. I've had a good cry the last couple of days. It feels like last time all over again with others who had their LLETZ at the same time as me all receiving their results first.

 

I realised yesterday too that if I do have to have a hysterectomy, it is going to be the same re waiting for histology report all over again. And it's that realisation, along with Dreamlands encouragment, that has made me realise I need more support. So I'm contacting my macmillan nurse tomorrow when she's back in and asking for a referral to counselling.

 

I think I'm quite anxious that the forum is going to be out of use tomorrow whilst it updates too. Even though sometimes I go days without looking at it. I still know its there if I need it.

 

Sending love to all of you reading this. Xxx

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Lots of love lemon lavender.

I do hope you get some counselling sessions sorted. It really is worth while. For me I've found the whole situation has made me take a really good look at myself and make positive changes. The counseling has been part of that. I feel like I'm coming out of the cancer diagnosis stronger than I ever was before. I really hope it can help you too.

Sending lots of love your way, xx

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Thanks Dreamland, I spoke with my Macmillan nurse and she referred me the very same day. Not sure how long it will be before they get in touch, but I feel better just knowing it has been planned. X

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Update almost 8 weeks since second colposcopy:

Wahooo! Great news, I am officially cancer free! Just got the news today.

Hysterectomy is needed but don’t know any details yet, I’ll be told when my appointment comes through.

How is everyone else? X

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That’s wonderful news Lemon Lavender!!! Sorry to hear about the hysterectomy but I assume that it is a precaution. Time for you to celebrate the end of this long period of waiting for news!
A x

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Hello Lemon Lavender

This is such good news. I remember you saying before a hysterectomy might be probably needed and they were going to advise what would be best.
But the main thing is you are ok. Imagine if it hadn’t been picked up ?
I remember you also said you might be getting married. Maybe after all this is over that might be possible?
All my love. Part of me feels that it is tougher in women with the long drawn out process than just to have the hysterectomy straight away. But I suppose they have to do it that way x

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This is excellent news Lemon lavender! I’m so pleased for you.

I have to admit I’ve struggled to get to grips with the new forum so I’ve been pretty absent however I just thought I’d check to see how you’re getting on. Utterly brilliant news!

Lots of love, xx

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Hey Rebecca1965,
How you doing? I hope the healing is going well.
Xx

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No not really :frowning:
I’m on 4 weeks Monday and I think have just got an infection so got antibiotics. Took day off work. Probably a water one I think
Loads of watery discharge still.
Think I need to take it easy and banned yoga

Thanks for asking :slight_smile:
Are you ok ?

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Hi Rebecca1965,

Sorry to hear you’re still not feeling healed. Are you still waiting for results?

I’m ok. Been really good for a few weeks then totally crashed this week with anxiety. I think it’s just part of the process. Trying to pull myself together now but just feeling very tired.

However, my treatment is complete and I am definitely cancer free. It really was caught right at the very beginning of cancer developing so for that I am grateful. The follow-up is 6 monthly checks for 18 months, then yearly for 9 years. Just hoping I can kick the virus out how!

Lots of love to you. Please update us when you get your results.

Xx

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Hi dreamland

They said the results might be 6 weeks, and I’m on nearly 4.
Great you are cancer free :grinning:
Totally get the anxiety.

I will tell you when I get the results though suspect they will be cin 2.

The letters are still scary

Hugs xxx

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Just to say results were good and recovery sorted :grinning:
I’m very lucky
I wrote about it in more detail in the treatment of cells forum under ‘ strange recovery and good news’

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Such wonderful news Rebecca. Thank you so much for letting me know. I’m so pleased for you xxx

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Thank you Lemon Lavender
You are one of the nicest people on the forum.
I really hope everything goes well and I will be checking in to see how you are.
Xxxxx

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Hi everyone, so lovely to catch up on this thread today. I have struggled with the new forum and my mental health so I’ve abdoned it all a little bit.

I’ve not heard anything about my hysterectomy so I spoke with my macmillan nurse on the phone this morning and she was shocked and said I should have received a date for it in the post. She’s hoping to let me know this afternoon.

I hope it’s not going to impact on the holidays I have booked, do you think they would rearrange if it did? If they believe they have got all the cancer surely it wouldn’t be super urgent?

I hope you are all doing well? I haven’t had counselling yet but I’m on the waiting list. I’m starting to feel like I might not need it now though. Although I did have a morning of checking my skin for skin cancer… As you do!

I’m so happy to hear your good news Rebecca, thank you so much for messaging me privately to let me know. I was overjoyed to hear it. Xx

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So lovely to hear from you LL
I’m not at all surprised that you have been struggling with your mental health. You have been through such a lot.
I am sure they would rearrange the op -you so need nice things to happen in your life such as holidays.
I agree about the new forum-it just seems a little more difficult to follow.
Its great you have the support of your nurse-let her do all the stuff and do nice thing as much as you can

all my best love

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Thankyou for so much information- ive been so worried about what happens, feel less stressed now

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