Shock diagnosis

Thank you that’s so lovely 

it’s so nice to be in touch with people who are going through the same scary thing 

I do remember with the breast cancer the waiting and not knowing is the hardest 

having to wait for the scan and imaging the worst it can tell is so frightening 

I do find it helps to put my fears and feelings down in black and white knowing  they will be seen by  others who know what it’s like 

yet again I’m wide awake and it’s 4 am on Sunday morning Yesterday I filled my day with fun  social out door activity and was exhausted when I went to bed at 12.30 so I have had just about 4 hours sleep l I know the only way I can stop total utter panic from setting in is to keep busy and not allow too much time to think So the early hours are the only time I have to face my fears 

the trouble I have is I know from my breast cancer treatments how horrible hard and stressful the next 6 months at least are going to be 

I know what chemotherapy is like  I simply can’t face the thought of loosing my hair again I know it seems such a pathetic thing to worry about in the whole scheme of things but I hated that more than anything else last time 

I think of all the worry and stress just the chemo alone brings and I can’t stop the panic and that’s if they tell me after the scan and further histology it’s treatable 

what if it’s not!
I look at things in my life and think what if I’m not here to see / do this Will I see my unbelievably beautiful granddaughter who’s five grow and blossom will I see the second expected grandchild past babyhood 

I know I have to take it one step at a time and I don’t even know what treatment I need yet but I can’t stop this terrible fear 

I had a lovely day filled with fun and friends but I’m chatting away and bang this voice in my head says  ‘ you’ve got cancer you might not be here for this next year ‘  

But when  I tell someone and just say ‘ oh no  they found some cancer cells in a fibroid they removed and now I’ve got to have a CT scan and hysterectomy it doesn’t sound too bad and they don’t seem too  shocked by it I don’t say but they’ve said it’s fast growing and I don’t know if it’s spread 

I’ve convinced myself every little symptom is one of advanced cancer so the IBS symptoms are no longer anything to do with the confirmed simple cyst they must be an abdomen full of cancer

the occasional dry thickly cough is no longer one left over from a recent cold it’s lung secondaries 

and so on 

every where I go I seem to meet people who’ve lost someone to cancer and share the horrifying final stages of their life and all I can think about is that might be me soon 

I’m hoping after this initial shock I can learn from my previous cancer journey a make sure it doesn’t become all consuming what I could do this time to make it easier and reduce the unnecessary worries so for those of you who have been through this  I’d welcomed any advice on how to make this awful journey even the slightest bit easier 

I found posting on here helped too- just writing down your fears can help and as you say- we understand on here because we have been there. 

I agree that it does always feel worse in the early hours- during the day you can keep busy to some extent. Sometimes I would just get up, go down stairs- make a warm drink and put tv on for half an hour.

It must be really tough to have gone through the breast cancer and all the treatments and to know what to expect but you did it then, and somehow you will do it again this time. I think at the moment you are in the limbo time and that is horrible- once you know exactly what you are dealing with and what you need to do- I think it does help- it did for me as I focussed more on the day to day treatments etc rather than the not knowing and fearing the worst. 

I think it is normal to fear the worst but hopefully once you know something concrete and have all the scan results etc back it will get a bit easier. I still very aware of every sensation/possible symptom and think the worst. But I try to look at it that I am just aware of my body- more than I used to be and if something does crop up, it really is better to know sooner than later. 

With your hair loss- I totally get that. It is not at all pathetic. Have you thought about trying scalp cooling? It is something to ask about when you have your appointment. I did scalp cooling all through chemo and kept most of my hair. I will pop a link with some info. I would have found chemo very hard to do without it.

Scalp cooling | Macmillan Cancer Support

You are probably right in that you are still reeling from the shock and in time you will be able to look back at your previous cancer journey and it may help a bit. In the meantime we are here and if there is anything you need, please do ask.

Jane

Thank you so much lots of friends  and family but I don’t want to keep bothering them with so many of my panicky thoughts and they haven’t lived this So it’s unbelievably helpful to know I can just message or call 

Hi Scared Bunny, the Macmillan Support line is brilliant and I called them several times a couple of years ago when I was going through all the waiting and wondering. I also called my CNS a lot,  but that was only office hours Monday-Friday as that’s when they worked. I found a couple of things particularly helpful: one was to try and focus on what’s known each day rather than the what ifs. I called that What Is rather than What If. That took daily effort. Still does. The other one was the illuminating realisation that the root of any anxiety isn’t what we’re anxious about but about us not having control over it. So yet another daily challenge was to try and let go and to just accept what was happening and to go with it. Not easy, and requiring a lot of focus, but it’s possible and it really does help.

Oh my gosh that’s so helpful 

I can see it’s going to take some hard work The what ifs are so much at the front of my mind 

I was a nurse so I have enough knowledge to scare me completely but not enough to know what I’m talking about so it’s really dangerous and makes everything worse 

im also a control freak so find it hard to let go 

I did manage it for  the breast cancer by realising it was way to complicated and I trusted my oncologist totally 

i didn’t even want to know what was happening let alone understand it 

I’m going to have to work hard at this 

thank you 

Matmar, just wondered if you’ve now had your MRI and maybe your results?

Thank you so much MarmiteFan59 I worked yesterday evening on your advice and focussed on the what’s known which is actually - consultant believes it’s caught early and treatment is a hysterectomy nothing after that is known ( likely but not known) 

Secondly I focussed on what I could control not what I couldn’t so;

I contact friends I worked with in the hospital I’m being treated in to be sure the process of booking me in for the CT and surgery is moving  as fast possible They replied assuring me they would sort my bookings out first thing this morning 

I made a plan for Christmas to be sure I was well prepared if by any lucky chance I had the surgery before or right on Christmas 

Focussed on my psychology book about emotional eating, planned meals and looked forward to my gym sessions to be sure I’m as fit as I can be to deal with anything to come

contacted the McMillan psychologist who supported me through the breast cancer and she can see me on Thursday so that’s booked 

planned my diary for the week to ensure busy nice things are in it every day 

I then went to bed at 9.30 and slept till 5 am and woke up without tears 

ive no doubt I’ll dip again  at some points but I do know what to focus on to get me back on track 

so thank you very much for such great advice 

Hi MarmiteFan59  I got my scan results and have more clarity on grade/stage and now waiting for a date for the operation. I agree that the absolute worst was the time waiting for the results. Now I’m waiting for an op date and it doesn’t feel as stressful as there’s a plan. I am not sure on whether I’ll have further treatment after op but think radiotherapy may be an option.

However I am worried about the possible medical menopause symptoms I may experience (I’m peri Menopausal) but my CNS has been amazing at helping me navigate these worries. She said that why worry when I’m not there yet and also I may not be affected that much as I’m peri menopausal. She’s been amazing at reassuring me on not worrying about what hasn’t happened.

Hope you’re well and really appreciate being part of this supportive community.