Scared out of my wits

Morning itgotme and welcome to the group none of us wanted to join, but the best group to be in under the circumstances. 

We have all been where you have, i know i have. I remember i had 3 scans over 4 days when i was first diagnosed and i was sitting on the end of the bed sobbing. My son who was 20 at the time came in and asked what was wrong, i told him i was scared and i didn't know if i could do it. He googled the scan i was going for showed me what to expect that day and told me i'd be fine. 

He was right, i got the all clear last week. You are not going to die, you are going to have a bit of a roller coaster ride which gets tricky at times but you will get off at the other end. There are lots of people who have got through this and so will you. 

Once you get your plan and treatment starts you will feel better. My kids are older than yours, so i never kept anything from them. I would say be as honest with them as you can so they aren't wondering what is happening and make things up in their heads. My hospital has a book called "mummy's lump" and maybe it would be worth asking your hospital if they have it for you to borrow.

I do have a godson who is 2 and he knew Auntie Shelley was poorly but the doctors were going to make her better and that the medicine might make me tired etc. 

Do you know what treatment you are having yet?

Keep coming and talking to us, rant, cry, scream and sometimes we laugh too.

Hi thanks for your reply.  I do have a wonderful support network of friends but it’s good to speak with someone that knows exactly how I’m feeling and having experienced the same.

I don’t know what kind of cancer I have yet, although I was given a diagnosis form with G3 ductal er pr -ve h82 +ve, written on it.  I have no idea what all these phrases mean, which adds to my overall anxiety.  I do know that I will be having chemotherapy as I have quite a large tumour in my right breast, approx 5cm, and believe cancer was showing in my lymph nodes, but again not sure what that means.

Im guessing that on Thursday I will find out all the information on type, spread, chemo plan etc.  I know I will feel better after that but the waiting is absolute torture and every little ach, pain, bruise, is in my mind is the cancer rampaging through my body.  I know this is not the case but difficult to stop these thoughts.  The first few days after being told I really could not function and once the boys were at school I just sat on the settee and cried.  My friend gently pushed me to the Drs and I was perceived diazipam which I must say, have been a life saver.  I really thought I was losing my mind and having a mental breakdown, but I’m now able to manage feelings and emotions better taking a bit more control.  

I am worried about telling my boys aged 7&11.  Some say not to say cancer other say be honest.  I don’t want to lie and want to be as open as possible, it’s not like I can hide this. We have all been through a really tough time already as in September last year I was diagnosed with a brain tumour.  I had surgery in October to remove it (not cancer and not related) so we have already been through the mill, and I kinda thought that we had been dealt the big one for my family, but how wrong. 

I just want Thursday to be over so I can really get into treatment and recovery with a set plan.   

Any tips on dealing with Chemo?  maybe I can get prepared beforehand, at least I feel like I’m doing something proactive.

Hi itgotme

I'm glad to hear that you have a good supportive network of friends.  They will be a good support to you if you need any help with the boys.  This waiting bit is the hardest.  Once you are in treatment, you can take it a step - say a chemo treatment - at a time, and will have the backup of the breast care nurses and chemo team.  You are plunged so suddenly into this nightmare (like the 'Upside Down' in Stranger Things), I think it's your brain's way of dealing with it to imagine the worst.  I've had some corkers of uncontrollable, sobbing meltdowns but you will also have days when you feel much calmer and can face what's in front of you fine.  You already have some good experience of that with your brain tumour treatment.  Big hugs to you for getting through that. 

Remember that when you are physically low, it can make you mentally low too.  If you can have faith in the fact that you will just have to get through the chemo, which has to be tough on the cancer, there is light at the end of the tunnel.  Whatever your body has to go through to get rid of this thing, you will cope.  Personally, my chemo experience wasn't as bad as I thought on the FEC bit, where I'd have a week of queasiness then 2 weeks of feeling normal.  I struggled more with the docetaxel bit though but I just took it very easy, I was off work, my husband did a lot and I tried to keep as much of the routine normal for my then 11-year old son as I could.  I'd do the school run and get his tea come hell or high water! 

We did tell him that it was cancer but asked him at the same time what he 'knew' about it already so that we could dispel any incorrect notions he had.  The school had a good book that they lent me aimed at his age.  Tell your boys' school as they will be able to help with any issues they may face emotionally.  Mine were wonderful and they would let him go out of the class for a quiet sit on his own whenever he needed, or he could talk to his teacher or the head.  He was the most upset when I lost my hair but it was just the shock of me looking so different.  He then got used to baldy mum very quickly.  I had a great wig for being out and about.  I think underneath he did worry more than he showed and it came out a bit in his behaviour at school.  Also, he was very attentive to me at home, so let them be as they like to help. 

There is a chemo chat thread here each month - https://community.macmillan.org.uk/cancer_types/breast-cancer/f/breast-cancer-forum/180460/may-2019-breast-cancer-chemotherapy-chat - to share experiences and there is a 'chemo tips' link in the first message.  My main tip would be to remember that the chemo team don't want you to be ill and they have medication to deal with an array of side effects.  And if one doesn't work, they can try another.  I can't promise you will feel 100% but it's very doable. 

I wish you well with your appointment on Thursday and with your treatment plan.  This board really got me through it. 

Best wishes,

Linda xx

Hiya itgotme

I love this place and it really helped me through all my treatment. Its good talking to people who get you.

One thing i would say about not saying to your kids its cancer is you would then have to be very careful that they didn't over hear it from anyone, that would be my biggest worry. You only need a parent at school to mention it to their child and then they ask yours if their mum has cancer and it could cause more upset than necessary. At least if you tell them you have cancer you can explain that you are going to have medicine that will make you better, you would also be able to explain that some days you may feel poorly and you will need then to look after you. 

My godson who was 2 took it really well because we explained that Auntie Shelley was poorly but she was having medicine to make her better. He came out with some corkers. The best was when he told his nanna that Auntie Shelley kept her hair in her handbag lol  

Best way to deal with chemo, take it one treatment at a time, and count every treatment as one down and not as so many left to go. The thought of chemo is a lot more frightening than actually having it. Make sure you have hand sanitiser and make people use it so they don't give you any bugs, you could even give one of your kids that job, it might make them think they are helping mummy. 

Thank you so much, some really valuable advice and food for thought on things I had not thought of. Thanks for the link also.  Feel more positive, I think just getting thoughts out of my head is very therapeutic and although I’m not alone, actually hearing from someone having experienced the same thoughts, problems issues is very comforting. 

Hi all.  Just to let you know, after such a traumatic beginning I had some great news yesterday.  My result from my bone scan showed no evidence of anything sinister.  I had convinced myself that it had spread to my bones and was petrified.  It has given me a real lift, and although have my ‘big’ meeting tomorrow with oncologist, it has just given me the hope and extra courage to face the future with a more positive view.  I know there could still be massive hurdles but I’m taking each positive at a time.  

Good morning itgotme.  I am really glad to hear your news.  Onwards and upwards .  xx

Brill News itgotme So pleased for you xx

Great news itgotme.

S