MRI yesterday evening, anxiety has increased - is this the most awful part?

Hi

Sorry to hear you are struggling, this is just such an awful time. It really does get better once you know the results, so hang in there. Did the nurse give an indication of timescales with her chasing? 

Endometrial cancer is very curable, but our minds don’t help us with the uncertainty. Do you think bottled up emotion of getting through the MRI has also caused your tears today?

I am keeping my fingers crossed for you, so you hear really quickly. Xx

Hi

First of all well done for doing the MRI- I know how scared you were. 

Well done for reaching out for support for your mental health with is naturally challenging at the moment. 

I sort of recognise that you felt positive last night- I remember feeling similar- after both my biopsy and then scan- partly I think to all the anxiety building up to it and then the relief that it had been done. From my experience the cancer diagnosis process can feel a bit like a roller coaster- up one minute and down the next. 

After all the build up, then the hospital appointment and then the PIP appointment today- it is no surprise that things are feeling out of control and that you are so upset. 

It is good that you called your nurse and that she is chasing up the MRI results. I would not read anything into having not heard back yet- it is still less than 24 hours since the scan so it would be very early. Did the nurse give any time scale?

Maybe leave the shopping today if you can. Is there anyone who could pop out and get you a few bits and pieces. Is there anyone who could pop in and keep you company today- if that would help? 

Maybe try breaking things down into small steps. Pop and brush your teeth. Then once that is done, rest for a while and think about a shower/getting dressed. Have you eaten, had a cuppa? Focus on one thing at a time. You have done all the right things in reaching out for help. You can also give the Macmillan Support Line a call for free on 0808 808 00 00 at anytime up to 8 tonight if that would help. And they are back on at 8am. 

If at anytime you feel in crisis with your mental health and not sure what to do- then do call NHS111. 

I am sorry that you are dealing with all of this and I hope that those results come back really quickly. 

In the meantime we are here

Jane

Hi Lizbot

I have suffered with clinical depression for many years and I understand how crippling anxiety can be it is absolutely awful you are definitely doing the right thing by contacting the mental health team. I found the period between mri and my results the worst time of all it really was hard. These feelings will pass I promise you and every minute goes past is a minute closer to your results. I think it is very unlikely to get results from an mri the next day I think my results took about a week, hopefully the nurse will be able to hurry them along for you as you are suffering so much. I find when I have really bad anxiety the worst thing I can do is make plans to do something particular… for example wrapping Christmas presents…I would work myself up to wrap them and then feel a failure because when the time came I couldn’t do it. Just take really small steps …go and clean your teeth or make a cup of tea ..just little things and one at a time. Dont beat yourself up about this it will pass .

Sending hugs

Linda xxx

I agree with your nurse! You will defnitely wonder why you were so scared! And hopefully when you’re through all this you will stick around here and help others going through it all.

Whilst we do all find it overwhelming at times, your reaction does seem to me to be extreme and I imagine it’s likely to do with your PTSD and low self image. There is no logical or rational reason whatsoever that you should be the “exception”. I hated it when people said to me that endometrial cancer was the “best one” to have - and I’m still not keen on the phraseology - but, looking back on it all, I do have to see their point. Looking back I also realised that my staging MRI was really little more than working out my priority for surgery. They didn’t expect to find anything else and they didn’t! Your nurse likely hasn’t phoned you as she won’t have the results back yet - I’ve never heard of MRI results being back in a day! You won’t hear till next week and will need to get through each day till that happens - though I can’t help wondering if you won’t even believe her when she tells you there’s no sign of spread. 

I know it’s hard, we all know it’s hard, but you need to find a way through this as you still have to get through the time to your op and the time to your post op histology. You've done really well typing all this out so clearly and coherently. I wonder if it might help you to think about how you would deal with this if it was happening to someone else? What might you say to them? Imagine if it was happening to a friend and think about how you’d support them and then apply it to yourself. 

Hi Lizbot

How are you doing today?

I hope things are feeling a bit better.

Jane

Good evening All

I'm still an absolute mess, it's making me ill now.  I feel that this goes beyond the cancer diagnosis, which has just taken me back to a place that I'd worked so hard to move along from.

I live near Merseyside and so forced myself to go shopping into the City today - I feel more so so that I could get away from my daughter, I can't bear to be around her as I can't stop crying and I don't want her to have to be around that.  I cried all the way round shopping and since I've come home, I've been on the bed crying since, despite taking a lorazepam.  Their effectiveness seems to be wearing off.

I've joined a Facebook support group but the women there seem to be in the US and all have advanced stages, which has set my mind racing further as I've been told that this is easily curable and treatable - although a lot of those women seem to be post-menopausal and have had symptoms.

I'm feeling really isolated; everywhere I look, people are in couples, or have their parents.  I'm single and can't discuss with my parents as my mum has dementia so we're not telling her and she's always with my dad, he can't really leave her for long.  I don't want to lean on my daughter too much as she's only 22 and I feel so bad that this is happening to her after me and her dad got divorced and he abandoned her.  Even my closest friends haven't asked how I am - do they think/realise that this isn't as serious as I'm finding it or do they just not care?

So sorry Jane, but to answer, I'm still not coping.

I rang a Macmillan nurse (again) last night who was at pains to reassure me that I will be fine but nothing is working for me.  I don't know how I'm going to get through to getting these results and I just know that they're going to be worse than what they've told me.

Sorry for being so despondent but this is absolutely horrific, as I'm sure it is for everyone, but my mental health/anxiety seems to be collapsing.

Hi again

Yes it is tough for everyone but I think it can feel especially tough when there are existing medical conditions such as mental health. There is no need to apologise for not feeling as if you are coping. 

You are taking all the positive steps you can, reaching out on here, calling the Support Line, calling your mental health support team for support/medication. 

I do not know much about mental health medication such as lorazepam but if it is not having the effect it needs then perhaps it would be an idea to ask about alternatives or dose etc. NHS 111 may be able to advise. 

This link may help with some general advice. 

Cancer and mental health support | Macmillan Cancer Support

Although sometimes there can be helpful support groups on social media sometimes the people who continue to engage with the groups can tend to be those who have more advanced cancer. Those that have an earlier stage may simply have the hysterectomy, recover from it and no longer need the group. 

Peaches Womb Cancer Trust | Awareness. Support. Research This one is worth a look. 

Feeling isolated does not help. 

I wonder if you have a Maggies Centre near you. They can be really supportive. They would also be able to provide support for your daughter if she needs it. 

Our centres | Maggie's

Macmillan Support Line is there until 8 tonight if you need it. 

I know it is really hard at the moment and I really hope those results come back as soon as possible. 

Jane

Hi Liz

sorry to hear you are still struggling. Living on my own, but without your past issues, I know it is tough. I have also been surprised over the past year, with reactions of family and friends, some just went missing, almost saying we’ll see you again when you are better! and others went above and beyond to help. I think some people just don’t know what to say, so they don’t say anything.

I really hope you will get some news tomorrow, given your nurse has said she will chase, and they must know how badly this is affecting you. thinking of you.

Hi Lizbot, my advice would be to leave that FB group, as it’s not helping! I avoided everything except this group for the reason Jane mentioned, because typically support groups tend to be populated by higher stage folk which is not at all truly representative of this condition. I find a similar thing with a condition I have developed, unconnected to the cancer, which is severe spinal stenosis caused by advanced disc degeneration. I joined a support group on Facebook but it’s largely populated by people who are less seriously affected than me but in possibly more pain and are often very negative and defeatist and spending too much time there drags me down. Don’t get me wrong, my spinal condition is serious but I try to maintain a realistic but positive outlook re my quality of life and the support group often doesn’t help that. 

You did really well to go shopping despite the tears! Especially into Liverpool! Are you red or blue btw? (My husband’s parents were Scousers and Dave is most definitely red!) I would agree with Jane that it would be good to chat to your doctor about your anxiety meds as some anti depressants etc can have side effects (though uncommon) of making your mental health worse! There’s nothing wrong at all with needing meds for mental health help, however with cancer sometimes talk therapy is more effective in helping us accept the situation and get our mindset in order rather than meds which may just dull our senses. Your hospital should have a Maggie’s centre or similar where you could get specific tailored support/therapy.

There is no logical reason to think that your results would be worse than they’ve told you - and grades rarely change anyway and, based on this group, I’ve seen more grades go down than up.

This is the way I chose to look at things, to ease my own panic and anxiety: none of us gets out of this life alive, and I was fortunate in having my cancer detected so something could be done about it. The people I feel sorry for are all the ones walking round not knowing they may have it. Knowing I had cancer empowered me, and having got through cancer and out the other side I’m a better person for it and have a far clearer view of what’s important in life and what actually matters than I had before. Very little fazes me nowadays. And you can get there too.

Waiting is just so difficult. I hope you can get some advice about your medication and appropriate dose for you right now. It's hard because what works for one person can be no help at all for another. Sometimes I have to put a post it note on my phone that says  "is this helping?" because maybe the group or webpage is a really good idea but maybe I've spent too much time on it. It's fine to look at different groups but if it doesn't help right that minute then it's good to step away. You have done a lot already very successfully including the MRI that seemed a mountain to climb.