I’m 36 with two children (1 and 5) and three days ago was told I had breast cancer. A full diagnostic wasn’t available as the consultant told me from the prelim results because my husband was due to go to sea the next day. I have anoher appointment tomorrow where things will be discussed in more depth but I do know its about 5cms and I will have to have chemo first. Telling my family was the hardest as my 4 year old niece was only diagnosed with a malignant brain tumour 3mths ago (she is a little star and fingers crossed it doing so well), I just feel numb! I’ve talked about it with all my nearest and dearest until I can talk no more and then cried (usually because they start first!) but what I find most difficult is the lack of control - i’m a bit of a planner and organiser and apart from planning menu’s or when to have a shorter hair cut I can’t think of anything else I have control over and its scaring me. Anyone else feel like this or have advice? thanks
I’m sorry you have to join ‘the club’ and yes, feeling that you have lost control of your life is one of the unpleasant surprises that a diagnosis of cancer springs on you.
But once you get a treatment plan and some dates, even if they are only projected dates, you can start taking back some control. Actually, you’ve done that already by deciding to tell people. So what needs to be done to ensure that you can rest when you need to, that your children are cared for even if you aren’t well, and that you get to chemo and other treatment sessions? Who can and will help?
There’s a lot of variation in how people are affected by chemo, even people having the same treatment, so you can plan for the worst and then smile when you tell people you can manage quite a bit by yourself after all, or you can plan optimistically and but make some contingency plans.
Having to turn over some control to others can be a good, if difficult, learning experience for some of us. Are you a military family? You may already know that all plans can be subject to contingencies. And if friends and family offer to help, tell them honestly what help you really need and don’t feel that you have to be a heroine when you’re not up to it. If the older child is in school, be sure to tell the school and keep them informed, but also tell them if you want it to be kept confidential.
My best wishes to you and to your family
Cheryl
I totally relate to how you are feeling. Like you, I like to feel in control and in charge of my life and one of the things a diagnosis does is through your whole life up in the air and leave you with so much uncertainty which is really hard to bare. That combined with shock and fear is a really powerful combination of horrible stuff to content with. I rememebr the day I got diagnosed (about a month ago now) and my nurse saying you will feel more in control of this soon -and I couldn’t even comprehend what she meant as I was in such a state of shock!
Cheryl is right - once you start getting dates and having some idea of what the near future looks like in terms of your treatment, then you will start to feel a bit more in control. In the meantime, just try and allow yourself to express your feelings - I am always able to think more clearly once I’ve had a cry - and try and focus on each day…just try not look too far ahead. Easier said than done I know but at the points when I felt really overwhelmed and terrified I literally just had to stay in the moment and focus on the task at hand. Distraction is good too - whether it be cleaning, hanging out with people who you can talk rubbish with, watching movies - whatever - just try and find ways to occupy you that give you a break from the all consuming worry.
This is the worst bit in my experience so far - the not knowing and the waiting - it will get easier. Just try and be as kind to yourself as possible.
All the best,
Jacqui
Hi Hellsbells,
Jacqui and Cheryl are spot on. Treatment plan, dates for the diary etc all help. I know you have wee ones and might have issues with childcare but if you can get into your local Maggies, you might find it useful. There is no ‘right time’ to make contact with them, whether you are newly diagnosed or already undergoing treatment.
I think you will like their practical and pragmatic approach. I went in last week out of curiosity, ended up blubbing and then found myself signed up for Tai Chi, Make up/ make over, nutrition workshop etc. They also ask/ answer all the practical questions i.e. childcare and travel arrangements.
I cracked this week and went into work as a ‘parent helper’. My first two weeks post diagnosis were easy because I was so busy at work. I have struggled more recently having too much time on my hands and found myself getting a bit ‘down’. I really enjoyed helping out with a bit of admin and making cups of tea, not exactly teaching but who cares!
Take care petal, and keep using the forums, they are great. x
Hello,
So sorry you’re joining the club - but this is a great and supportive forum where you won’t feel so alone.
I echo what the others have said - you are at the worst time when you feel terrified and out of control and imagining the worst. BUT you will feel better once you know what your treatment plan is and embark on it and understand a bit more about it all. I know it seems like it’s just going to get worse when you think about the treatments and surgery - and I didn’t believe anyone when they told me the same thing 4 months ago but it does. When I was diagnosed I was crying almost all day everyday. I still have a few wobbles - but am mostly back to myself - and there’s definitely alot more laughter than tears.
I’m 33 and was disgnosed with a 9cm lump (plus 2 other smaller ones) and have just finished my chemo and have my op next week. I don’t know about you, but when I heard the word ‘chemo’ I was terrified!! But it wasn’t that bad. I was one of the very lucky ones with very few side effects, but I have met some other young women who sailed through it too and managed to work AND look after their children through it all. However, there are some who suffer side effects, so for the first lot I would take it easy for the first week and get some help if your husband’s away and keep a diary of how you feel as the side effects are similar each round (unless you have any bad ones, in which case your oncologist will be able to prescribe some drugs so you don’t have to suffer them again). That way you’ll know if there are any days that you’ll need help with the children. Oh, and hardly anyone is actually sick! I assumed I’d have my head down the loo for months and months!
It must be difficult with your husband away - this is a time for lots of hugs. Is he at sea for long?
Hope today goes well. Ask lots of questions - and ask us or the helpline lots of questions too! We’ll be here, virtually holding your hand through this and it won’t be long until you’ll be returning the support. I’ve also made some real friends (as opposed to virtual!) from the forum who I meet up which has also been a great support as although my friends have been brilliant, they don’t really understand…
Sending big hugs.
X
Hi
All the other ladies have said it all so just sending you all my support. Hugs to you and yours.M
PS I am a complete control freak too - and I’m still finding that hard as I’d completely mapped out my future and know it’s just a big question mark. I wonder if we will come out it a bit more relaxed? I get really stressed out even having friends round for dinner as I like everything to be perfect!! It suddenly just doesn’t seem that important anymore!
Hi Hellsbels, so sorry you’ve had to join us. You’re only 3 days in & it is the most terrifying time but i would echo all that the others have said. Just take one step at a time, it really does help & once u start getting dates etc u will get your head around it, though it’s probably hard to believe at the moment. Good luck with your appt today, let us know how u get on & keep posting, the ladies on here have such fantastic advice & there’s also the helpline if u need it, take care x
Hi Hellsbels
The biggest problem I had throughout my treatment was that I was no longer in charge of my life. I’m used to everything being run on rails, with me in control of everything. I found it tough to be told when and where to go, be pushed and pulled about, things done to me that I didn’t like, without really much say in any of it. I suspect I made myself unpopular at times by asking lots more questions than the medical people expect - tough! It’s my body, I wanted to know what was going to be done to it - and why.
I can’t suggest any way of improving the situation, you just have to put up with it, but you have my sympathy if that’s any help.
The biggest hint I can give you in staying in control is to discuss any worries or niggles with your BCN or the Helpline. They can keep you fully in the picture which means you can make informed choices. Don’t be browbeaten. If you think things are running away with you step back and reassess. It is all too much to take in all at once. There is lots of information out there, but remember the Multi Disciplinary team will have given an indicationon as to the gold standard. Treatment for YOU.
Best wishes for the next steps
The biggest hint I can give you in staying in control is to discuss any worries or niggles with your BCN or the Helpline. They can keep you fully in the picture which means you can make informed choices. Don’t be browbeaten. If you think things are running away with you step back and reassess. It is all too much to take in all at once. There is lots of information out there, but remember the Multi Disciplinary team will have given an indicationon as to the gold standard. Treatment for YOU.
Best wishes for the next ste
Cackles
Oh yes, I know that one! I’m an utter control freak and OCD about being clean and tidy etc. Was hard for me to adjust,I’m still in control of what I can be and I’m sort of at peace with knowing I can’t be in control of this disease but will do what I can to help myself.
It’s hard, very hard.
But I’ve managed, for my own mental health, to be as independent as I can be and for the most part I’ve carried on doing domestic stuff etc, I’ve had to accept it takes a lot longer and I have to spread it out over the day but I felt the need to do as much as I could.
Believe it or not you’ll perhaps be more adaptable than you think.
Oh and BCNs can be fantastic for stopping your worries! or making sense of things. xxx
awww hellsbells, I know exactly how you are feeling. Its flippin horrible this being out of control malarky!!
First of all your out of control of the cancer, and you have to let the medics and drugs take control. Then you are out of control of the treatment, when you have it and what you have, which again is horrible, and then you are out of control of the side effects, and what they can do, and what treatment you will need for them.
I am so sorry you find yourself in this horrible horrible place, please keep posting, everyone is lovely and so so helpful. The BCC helpline is a life saver!! I dont know how people managed in the old days before BCC helpline and this forum for support.
Wishing you well with your treatment.
xxxx
Hello fellow control freak!
You have certainly come to the right place. I like you posted to this forum when I was diagnosed at the beginning of September “just been diagnosed when do the tears stop”. Please look for the post and read the responses. I was totally overwhelmed with the support & advice given.
I am 38 with 2 beautiful children. I have no history of cancer at all in my family and I was totally shocked by my diagnosis. I still am.
For me the worse part of this journey so far (and sorry for using the word “journey”) was the waiting for the diagnosis to be confirmed, telling family and friends (especially my son) and waiting for those envelopes to drop through your door confirming appointments. Once those things have happened control does start coming back and the determination to get through this.
I was diagnosed on 6th September and had my first chemo session last week. I’m still learning about the medical terminology but I’ve started on FEC-T and will be having surgery after 6 cycles. Still early days for me but the side effects so far are managable. Not pleasant but ok. My family and friends, this website, work, the thought of christmas and this week’s sunshine has helped me through day by day.
Please inbox me if you have any questions or just need to say hi. Thinking of you x
Hi Hellsbells, I know how your feeling hun. I was diagnosed in Aug and at first felt completely shocked and out of control. Everyone on this forum have been so great and supportive. I don’t know what I would have done without coming on here every day. The worst thing is waiting for the results. I am still waiting for results following my mx but I am sure when I finally see the oncologist and have a treatment plan I will feel more in control.
Good luck
Lizzy xx
Thank you ladies, all your comments and support means alot and in a strange way the thought that there are others experiencing similiar fears and emotions and get through it is very comforting.
Had horrible few days but can now see things moving forward and my mood seems to be doing the same. Have a fantastic BCN who seems to understand that I just want to start treatment and is clearly working very hard and getting me much needed appointments - had CT yesturday and looks like starting chemo next week or week after (can’t come soon enough!!).
Loves to you all xxxx
Hi Hellsbels,
Sorry to hear about your diagnosis of BC but you will soon find you have lots of support on this site. I was 34 and had a 4 month old baby when I was told I had breast cancer and I like you hated the fact I had no control over this. You will feel better once your treatment plan has been discussed and the kind of time frame you are looking at.
I finished chemo in July and recently finished my radiotherapy treatment this month so if you have any questions regarding this please feel free to message me.
Wishing you well
Beccy xxx