Feeling adrift

[AnnieV]

Hi @Dunnock & @Cat10 

Wishing you both the best for the oncotype results. I remember how nerve racking it was; not knowing if I would need chemo or not. I scored 13 so narrowly missed needing chemo.

A cancer diagnosis casts a long shadow; even once active treatment is over it’s not always easy dealing with the psychological ones & any other side effects.

Still not discharged as a CT scan in the autumn revealed an ovarian mass & while it was (eventually) determined it wasn’t cancer I still had two elevated blood markers so need to go back for more blood tests in March. Can’t seem to get out of the woods just yet!

Good luck & hope you get favourable results soon xx

[Dunnock]

Hello Cat10,

Your post caught my eye because I too am waiting for Oncotype test results. I'm getting mine on Feb 27th and can feel the dread/ hope about the score starting to take hold already. I'll be having 5 days of radiotherapy and 5 years of Anastrozole as part of the treatment. I know what you mean about wanting to be left to get on with our lives. I could cope with 5 days of hormone therapy, but 5 years!

I can also relate to your words about friends being ready to move on. The initial awfulness of the diagnosis and waiting to find out what's going to happen when everyone rallies round gives way to an 'Oh it's all right now, it's all being managed' feeling. There's a definite shift, which l think can make it hard on us because we're still on the inside (so to speak) with a lot still to deal with. I say this without resentment; I'm so grateful for the support I have. In addition to that, you've been through a lot with losing your mum. That's why this forum is so important, a chance to give voice to feelings and know they'll be heard and understood. 

Wishing you  all the best for your results,

Dunnock xx

[Cat10]

Hi Annie, I have just read your post and whilst I know this was a time ago, really resonated with me, that's exactly how I feel now. I'm waiting the results of my Oncotype DX test too,another couple of weeks to go and just feel really down, don't want to do this any more although I know in a lot of respects I have been very lucky compared to others. I'm doing the same diet wise as you, and am getting "advice" on alcohol left,right and centre. Wish there was some concrete advice out there on diet but it does seem to differ a lot. I am lucky to have some good friends, lovely family and partner but do feel that everyone just wants to move on now,me too but treatment is still needed. I usually am fit healthy and exercise and at the moment am having a bit of a grump bag as want everything bag to normal but not sure what that is now! My Mum passed away from metastatic breast cancer 18 months ago and that's sitting with me too, she'd first had it at my age but was 83 when she passed. Need to find my big girl pants again and go back to the positive bunny I usually am but struggling at the mo. Sorry for the bug whinge, really hope everything's OK with you x

[AnnieV]

@LMitchell 

Thank you! Slowly navigating my way through it all! xx

[LMitchell]

Annie

So pleased for your news.

Another step ticked off and the journey planning for the next starts.

All the best

[AnnieV]

@Mrsmillie 

Thank you for your message. I was fortunate that my results showed low risk of recurrence & so chemo would not be beneficial. Relieved to get a clear cut result but shattered now. Notched up a number of sleepless nights this past week.

I am sorry to hear you will go through chemo, but I would be thinking the same as you. If it is beneficial & recommended then I would do it too. I want to do everything I can to never have to go through breast cancer again.

Been ploughing through the radiotherapy & tamoxifen booklets (been prescribed that today). None of this is easy but all we can hope is to make it out the other side & carry on with life.

Fingers crossed your side effects from chemo will be manageable. Big hugs to you & all best wishes for your next stage of treatment. I am sure there will be plenty of people on the forum who can help you by sharing their experiences xx

[Mrsmillie]

@AnnieV 

How did your appointment go today? Hope results were good for you.

Had my appointment today, think I will be going ahead with chemo as preventative treatment. It’s a very individual choice but I know the way my mind works and if I didn’t do it I would blame myself if it did reoccur…..it would be once a week for up to 12 weeks, so the ball has been set in motion but I still have time to reconsider if I choose to….it’s certainly not an easy decision that’s for sure! The one thing we all want is to give ourselves the best possible outcome and if the oncologist thinks this is best for me then maybe it’s best to follow that advice.

hugs to you xx

[Mai7]

Just wanted to say hi AnnieV, breast cancer can be a bit lonely at times but that’s where we come in and show you that you’re not alone.  It’s hard to not look at everything through a cancer lens once you have cancer, I mean, why wouldn’t you?  Those around you probably want to support you but often don’t know what to say or do and don’t really understand how much your life feels altered when, as you say, you still look so healthy.  If you need chemo then just take it a step at a time. Chemo takes over your calendar quite a bit. I had 8 rounds in 2017 after stage 3 diagnosis and still here and doing well.  Let us know how you’re getting on and feel free to ask any questions. X

[louby_lou69]

@LMitchell This has been my philosophy too. Great post 

[LMitchell]

I am sorry your day was not as hoped. From my experience I have found some people seem to think once the surgery is done the cancer is gone and life returns to normal. Some have no concept of the emotional trauma of a diagnosis and also the physical pain and discomfort of the surgery. TBH this is what I thought - and after hearing such success rates and getting the cancer when young and all the amazing medicine there is now, people cling onto this. Those who are close to me and my immediate support network I have been completely honest in my 'education' to them on what each step could mean, good and bad. This works for me  - as the saying goes a pessimist is never disappointed. Also with them knowing so much they can support me better and know the pain I am feeling with each step - I really feel they are on this journey with me. We are completely open and honest with each other, but we always remain positive, we are not moaning minnies. They will ask questions about each step, which makes it so much easier for me to digest what I have been told. It is such a huge topic, and I am learning so much as I go-along, and certainly not a 'qualification any of us want to get a distinction in, but it helps me get my head around it all. This is a BIG deal, not everyone gets it, but those who are important to me do and that is all I need.

This is YOUR journey, don't let anyone else belittle how you feel or your handling of it, surround yourself with strength and as Frank would say 'do it your way'

Hugs

[AnnieV]

@Mrsmillie 
thank you 🙏 I have my appointment on Wednesday also & will be wishing you all the best for yours. I hope clarity comes both our ways xx big hugs xx

[Mrsmillie]

@AnnieV 

I’m in the similar situation to you as regards the possibility of chemo, as you say it comes as a shock because everything after mastectomy was clear but because of high oncotype score chemo is suddenly thrown into the mix. I’m driving myself crazy trying to weigh up the pros and cons…..my thoughts change by the hour! I have appointment with oncologist on Wednesday to go through it all and try and get some clarity, but, because at the end of the day it will be my decision I feel totally lost and confused.

I think some people do look at you and can only see a person who looks fit and well so really can’t comprehend what you are dealing with. I must admit I think I have removed myself from having to deal with too many people, maybe becoming a bit antisocial, but I really can’t cope with ‘pretending’ that all’s fine when my mind is in total turmoil.

Fingers crossed you will not have to deal with chemo and the outcome of your appointment next week is not as bad as you are imagining.

Sending good wishes and hug x

[louby_lou69]

@AnnieV I'm so sorry about how disappointing your day has been. I think many people have very little understanding of cancer and cancer treatments. I know I've had to educate some of my family about the different symptoms and drugs etc. People react differently to this.

Ive had people looking at me with pity, other people haven't text or rung me for weeks. Some people are totally wrapped up in their own lives too. 
Lou x

[AnnieV]

It's been nearly 5 weeks since my surgery and I am having my follow up appointment next week, so a long wait. A couple of weeks ago I was told that further testing was to be done on my tumour to work out if I would benefit from chemo (so that came as a bit of a shock). I have been on a real downer this week and scaring myself with worries about survival rates and stories of people whose cancer came back after many years. So I was looking forward to today to see my family for the first time since diagnosis and to lay flowers on my mum's grave, my first visit there since her funeral in Feb 2020. However during the day no one talked to me about what I was going through - like a big elephant in the room. Perhaps they don't know what to say? My sister-in-law looked at me in disbelief when I said I don't drink anymore and when I declined processed meat topping on my pizza. My brother asked if we had been on holiday and we reminded him that we had to cancel (small matter of surgery to deal with) and he thought at first it was because of Covid (he was surprised that we got insurance for a full refund) and I had to say it wasn't because of Covid we cancelled! The parting shot was when my sister-in-law said, that they could perhaps come to us next time and I had to say I might be clinically vulnerable so could be tricky to plan anything now. My husband then had to explain to her why that might be the case if I need chemo etc.

Am I being oversensitive because I am viewing everything through a cancer lens and others aren't? I look perfectly fit and healthy so maybe it is hard to believe what I am dealing with. I am sort of going out my mind as I am on brink of finding out if I need chemo or not and cannot begin to think of how to fit that in with everyday life. At least my kids were reasonably behaved today and that is unpredictable - my older one has OCD (for a number of years) and was diagnosed ASD a week after my diagnosis. It's all too much and I feel a little bit abandoned.