Waiting for the first chemo but trying to process bad oncology feedback... help!

Hi all… New to here and need some support from other people more in the know than me.

I am really struggling with all this waiting around, sitting at home with a big pile of information leaflets and trying not to read the lot but don’t know where to start in order to keep any kind of sanity.

I have kept a lid on it all so far, had a total mastectomy on the right side 3 weeks ago, and had feedback last week. Op feedback was fine but I am terrified about the ontology feedback as it wasn’t great. I had 2 grade 2 tumours, with a lot of lymph node involvement… this will mean chemo, radio, various different oestrogen stopping and menopause inducing drugs etc. I am now really scared as he said this puts me in a high risk group for it spreading or returning, and that’s the bit I can’t get out of my head before I even start all of this. My breast care nurse is amazing, and I have accepted counselling… but I just feel very lost and scared. I have 2 young children, 2 and 6 and I am 40 myself. 

I don’t know where start on here… but I know I need some support, is there anyone else who was or is in the same situation before the chemo… I guess a bit of emotional strength and some kind of success stories or encouragement would help! I am also very scared of the first round of it, but haven’t read up yet so couldn’t tell you what I am due for, but I know it is going to be a very high level of everything…

Hi Leo, 

my heart goes out to you as those of us who are further down the one have been where you are and understand exactly how you feel. Waiting for results and treatment to start is very stressful and you can’t help imagining all sorts of scary scenarios. However, I am halfway through chemo and feel very positive about my future. I was diagnosed aged 48 on Sept 30th last year, and to cut a v long story short had what they thought was 2 grade two tumours on the right, but after mx turned out to be three, the biggest of which had gone undetected. I also had a 12mm tumour in my lymph node. To add to that I had extensive DCIS on the other side so it was back to surgery for full lymph clearance on right and mx on left! At this stage I literally fell apart as I thought things could not get any worse. 

Chemo was my worst nightmare but now I’m in it I know it’s manageable and although there are bad days there are plenty of good ones too. 

Trust your doctors. They know what they are doing and breast cancer is treatable thesedays. It’s natural to feel scared and uncertain, but once you have a treatment plan you will feel better. 

Family and friends have been an incredible support to me as has this forum. I am on the January monthly chemo thread where those of us who started in January help each other through. It really helps talking to others who are going through it too. 

Take care, take it one step at a time and try to steer clear of Google as there are some scary and misleading sites out there.  Breast Cancer Care is a great website for information.

big hugs. I hope this helps 

Claire xxxxx

 

 

Hi Leo, I have just noticed you have started the April thread, and as Claire has said, I’m sure there will be others joining you soon. I’m also from the January thread and have found it really supportive and helpful. Claire and I started our chemotherapy in the same day in different parts of the country but distance is nothing on here, you chat and compare notes as if you live over the road from eachother! I also drop in on the other threads to ask advice too.
I found waiting for appointments, results and treatment to be the worst time. I was diagnosed in November, mastectomy 7 December and started chemotherapy on 18 January. Once I started chemotherapy a strange ‘calm’ came over me. It was like ‘well this is it and I e just got to get on with it!’ Yes it’s tough but it’s doable. You will see that we moan and complain, but also that we come out the otherside and enjoy the days we feel great again!
Check in on here often and ask anything you want to know, we’re a friendly lot :slight_smile:
Take care xxx

 Hi Leo,

Just dropping in from the March starters to wish you all the best.  The waiting around is horrid.  Can only say “dip into” any information booklets and  DO NOT GOOGLE!  the latter advice was given to me by my breast cancer nurse, and was wise, wise beyond belief.  I ignored the advice & scared myself silly trying to sort out procedures before my surgery and after.  I went out & bought a pretty box (covered in owls!) to dump all my information in.  I also got a load of wallet files & labelled them up so I keep hospital appointments, sick certificates, booklets all separate.  It means I have all information in one place but don’t have to look at any logos or hospital headers unless I want to. At time of writing one of my cats is sleeping on the box, which  makes it a bit less scary for e.

Take care of yourself, all the best, Mary xx

Mary, I have done a similar tho g with my appointment letters, all filed in a folder and in a drawer out of sight until I need them. My green chemo folder is in there too. The other thing I do is put the drugs I’m sent home with after chemotherapy in a plastic tub and as soon as I’ve completed the course, what’s left gets put away in a bag that we take to the unit each time. When I’ve finished all the drugs for that cycle - the plastic tub gets put away out of sight so I can move on and enjoy being on the up again!!
Xxx

Hi there I’m the same as you due to start my treatment on the 5th April can’t bring myself to read the leaflets yet. I’m 41 and have two boys 8 and 5. Only yesterday I told them that I’d need treatment (as child friendly as I could do) they are not going to realise what this means until it’s happening I suppose but the thought of this this talk has been upsetting me since i was first diagnosed in January. Feel a huge relief now I’ve spoken to them and they both seemed fine about it, pArticulary amused when I mentione mammy may need a wig. Although I’m interested in the cold cap too and any tips which can help me and my family through this. Thanks

Hi sianbun. I had my first EC cycle on Tuesday and I tried the cold cap. All in all it was no where near as bad as I was expecting and the cold cap is definately bearable. I took a couple of paracetamol on arrival at chemo unit so presume that helped. Cap was on for about 3.5 hours although they gave me chemo slowly as it was first one. Then side effects however have not been so good. I’ve been throwing up for 3 days and had to go back for some different anti sickness drugs yesterday which thankfully seem to be working. I’ve been very tired and have no enthusiasm to do anything. I’m sure I will find ways of coping with this for the next cycle and perhaps the first is worst as body in total shock.

All I can say is that its doable and at the end of the day we don’t have a choice. 18 weeks seems a long time but hopefully the summer weather (if we get any) will help cheer us all up.

Good luck and take care.
Helen xx