What do I want to say?

Diagnosed with breast cancer Recently diagnosed with breast cancer
1

How do I start? How should I feel? What are the right questions to ask? How can I get through this and still be me? Will I get through it? What should/can I eat? Can I ever use shampoo, hairdye, make-up again? Why does everything seem to be poison when you get a cancer (I even struggle to use the word yet) diagnosis, even all the treatment. I don’t take tablets for a headache and now I’ve got to put actual poison in my body to be able to live. 

 

Sorry to rant a bit, but this seems a good place to do it. I feel like I want to rant at everyone at the moment. Was diagnosed last week. Early stage invasive in two areas and DCIS. DCIS grade0 others grade 1 and 2 And been told to think about whether I want a lumpecomy or mastectomy (neither, thank you) before I see doctor again tomorrow. I can’t believe how hard that has been to write down. Managing not to cry at the moment, but scared to death. Scared to admit I’ve got it. Scared to make the wrong decisions. Scared of all the treatment. Scared of not being in control. Scared of too much self pity (a lot of people here are dealing with worse diagnosis and seem to be dealing with it better - I’m such a baby even with injections). Scared that after surgery that it’s worse than they first thought.

 

I had started HRT in February after 6 years of struggling until the mental aspects of it (I wasn’t functioning for days in my cycle) made me look into it (as I said before I don’t take tablets for a headache). Then miracle within days of starting the patches I started getting me back. I’ve had the best few months I’ve had in years and my son and husband no longer had to tread on egg shells. Now I’m wondering if it was the worst thing I could have done as it’s oestrogen receptive! Hubbie and son are probably dreading the return of the menopause symptoms more than supporting me through this! Struggled to cope cyclically with what I know was a fairly easy life without HRT, now I’ve got to deal with this. 

 

I’m usually the one that sorts everyone else out and hate feeling vulnerable and I’m now a control freek without any control!

 

Sorry for such a long rant, but to say I didn’t know where to start I now feel like I don’t want to stop.  There’s another fear letting the stopper out and all the emotions flooding out uncontrollably!

 

2

Welcome Fairy Dust - feel free to rant here -you will always find someone who will listen and understand as we have all been there or are going through it too .The lack of control was a big issue for me too - but I’m afraid to some extent you have to let go and trust the medics .Hard I know .Cancer is cancer no matter what grade /size etc -it scares the living **** out of you .My GP pointed out it’s not every day you are faced with your own mortality - no matter what the prognosis it’s very very scary and pretty surreal .Come talk to us here there is lots of support and advice .Jill.

3

Fairy Dust

 

Hello and welcome to the forum, which is a place no one really wants to be BUT as Jill said, you will get loads of help and support on here from the wonderful ladies who have gone and are going through exactly the same as you.

 

Come on here whenever you want and rant, rave, cry whatever, our hands are out there to hold you and get you through xxx

 

Try to just take each day at a time, there is a lot of information to take in at this point, especially when you are being asked to make decisions which will dictate your course of treatment.  One thing though please do not google generally on the internet, Dr Google will give you out of date misinformation which will only scare the pants of you, so it is a good idea to avoid it as each persons’ diagnosis is unique to them.

 

When you see the consultant tomorrow ask them what they believe to be the best course of action for you in light of your diagnosis, after all they are the experts,   Once you have your treatment plan, honestly it does get easier because you know what is going to happen and when, somehow I think that helps you get through it all.

 

Oh injections, dont go there with them, I think I can match and exceed you with them, I could not even look when the nurse used to give me my flu jabs which was the tiniest of injections, but the team will get you through any that you have to have and will totally understand your fear.

 

I too hate taking tablets but in the last year I have had to learn to adapt as I have blood pressure ones to take and also Tamoxifen as my cancer was hormone receptor positive.  I do not look on it as a poison, more this little tablet is doing everything, as is the same with all your treatment, to ensure that the cancer does not come back so it is a small price to pay to take it every day.

 

Your team will work with you to answer all your questions and fears.  What I did was write down all my questions in a little book so that I did not forget anything for when I next saw my consultant.  I know sometimes it can be scary to write things down because in a way you are being forced to deal with what is going on but look on it as a good way of making sure that you get things out of your head and that you will not come away from the appointment having forgotten something, also it allows you to deal with things in bit sized chuncks, small steps at a time.

 

Sending you a pair of the tough pants we give ladies on here to help get them through times like this, they have very big pockets so that we can be there will you.

 

Let us know how you get on and sending you lots og hugs.

 

Helena xxx

 

 

tough pants.jpg

4

Hi Fairydust,
Glad you could come & rant here, I think we’ve all been where you are at some point, no matter what our diagnosis is, but it does pass.
Not a lot more to add than Jill & Helena have said.
Of course, it’s scary & none of us want to go through this, but I would also echo Helena’s point in trying not think of any treatment as ‘poison,’ but rather than treatment to get it dealt with & to avoid it coming back, so that we can get on with our lives. Thanks to this, the outcomes for bc treatment are some of the best out there.
You will get through it, we all do & sending hugs.
ann x

5

Fairy Dust -I text my manager and asked her if she could meet me in my car in the carpark - I couldn’t face going into the office as I knew would cry telling her -I then text a couple of close colleagues and asked them to come and talk to me too- I then went home and cried and then worked at home most of the time til my op- found it too hard to keep up had pretence at work and didn’t want the world and his wife knowing my business either - I only told those that needed to know .

6

Yes , it’s very hard telling people cos you have to deal with their reaction /upset as well as your own - I was very glad when I got to the bottom of the list of people I needed to tell. It does get easier -promise !!!

7

Hi Fairy,
Sometimes there can be a difference of opinion, but the surgeon does need to be sure about what surgery is needed. It’s pants for you to go through this though & I certainly remember that feeling about wanting that thing out of me.
Sometimes further investigations are needed to get the treatment plan right. I had to have an mri which I found very stressful, but once it was done, I was glad it was.
They do know what they’re doing, but it’s horrible to be in the middle of this when anxiety is sky high.
It would be far worse if it turned out more surgery was needed because not all of the necessary investigations were done.
It will get sorted out.
Sending hugs
ann x

8

Hi Fairy
When going through this, timescales feel an like an age, Time takes on a different meaning somewhat.
Usually, treatment timescales follow current guidelines, although some, as ever, due to a number of reasons have a more difficult experience.
Although it doesn’t feel like it, from what I’ve read here, your experience is not unusual in respect of this & in any event, a few weeks here or there won’t make any difference.
But, I do remember feeling as you do & was terrified the mri results would delay surgery or change the treatment plan, but In the end it didn’t.
I had day surgery & I was so relieved when the day arrived!
ann x

9

I’m in agreement with Ann and Helena…it’s psychologically tough but they have to get it right. In an ideal world you’d be rushed along a day or so between each appointment and discussion, but sadly the reality is that there is usually a heavy burden on the system. This may mean a wait, but also means you won’t be outside the boundary guidelines for treatment. It’s hideous I know…Absolutely sound destroying…but as my surgeon said to me; bc is a slow progressing variety of C, a few weeks makes like difference to something that could have been there a very long time. I know it’s not a great way to have yo view things right now, but be comforted a bit by that? Xx

10

That should have said ’ soul ’ not sound! I do think you should express your concerns to your bcn, this is what they are there for as support, advice and mediators. Everything you are saying here is going to eat away at you unless you let it out to the team. Let’s be honest, sometimes things do go wrong, guideline times are missed and people don’t get the quick treatment they deserve. Maybe showing your distress will make them move a little more quickly …or at least explain to you more fully why the timescale?

11

Much calmer today. Been researching the psychology of dealing with breast cancer and have resolved to be strong mentally to help myself physiologically (see, learning big words as well!).

 

Apparently being able to have a rant and a cry now and then is good for us and not a sign of weakness.   It’s keeping it all inside that does the damage. So thank you to this forum for giving us a safe and nurturing place to vent and thank you to all you lovely ladies for being their to listen and to impart your wisdom.

 

After Friday’s experience I wasn’t going to attend the new year’s eve function we are booked in on (thought I would bring everyone down), but now I’m going to party!

 

I found two useful quotes this weekend:

 

You don’t know how strong you are, until strong is the only choice you have.

 

And

 

If you can’t change your situation, change the way you think about it.

 

Hope I can remember that one when I have my next meltdown!

 

Happy new year and my wishes for a very healthy 2018 for us all.

12

Hope you manage to enjoy your party Fairy Dust -there is a place for ranting and raving ,weeping and wailing and positivity during this experience ,it’s a bit of a roller coaster lots of ups and downs .It most definitely does help to talk to other people who understand and are going through it too -makes you feel far less alone .

13

Hey Fairydust, That quote about ‘you don’t know how strong you are, until you have no choice’ has made me get a bit teary - its so true. People often come on here and make comments to people; you are so brave, so positive, I don’t know how you do it…and generally we answer that we have just got through it because we have HAD to and had no choice (well, there was a choice, but that doesn’t even bare thinking about!). As for the psychology…spot on lady! The process is about letting it out, whatever those feelings might be, you can’t gradually work your way through it until the pain and fears are out in the open. Strength isn’t just something that comes without tears and heartache, it is something that comes FROM that process often. (hence why counsellors always tell you that you might cry and get upset during the process of counselling!)

14

Just an update. Got my next biopsy date - Tuesday 9th, so a just over a week of waiting again. Then a 1-1 with a nurse on the 17th and an appointment with the doctor on the 19th. 

 

If the biopsy is OK I will still have a choice between a lumpectomy, but because of size of area involved it would be done like a breast reduction, and a mastectomy. I’m still flip flopping between the two! Just hope I still get a choice after next Tuesday. 

 

As much as I want this out of me, I’m fretting about the mutilation I’m facing, whilst trying stop myself worrying until the op date arrives. I know I’ll be in meltdown on the day whatever is involved.

 

Trying to do my own treatment at the moment, until the NHS actually does something. I’ve completely changed my diet - cut out dairy, more or less vegan - I’ll have sprouted feathers and be chirping by the end of the month. Already lost 12 lbs since diagnosis, as apparently slimmer ladies get through this and survive better than us tubbies. Got the idea that I can starve it into submission by taking away its favourite stuff. Trouble is, it’s also mine. At least I can still have the occasional piece of dark chocolate.

 

I sent for Jane Plant’s book “Beat Cancer” and the one by Sophie Sabbage “The Cancer Whisperer” and trying to follow their advice, which includes taking control. You don’t have to tell a control freak that twice. Luckily I’ve warned (and apologised in advance to) the doctors and nurses already.

 

Will let you know how I get on next week.

 

 

15

Oh, do have that piece of dark chocolate, Fairy, you deserve it & it is good to see that you’re doing something to feel more in control.
Facing surgery is daunting, but think of it as the first stage on the path to recovery.
ann x

16

Fairy Dust

 

What ann says is true, facing surgery is daunting especially if you have not had it before but this is the first stage on the road to your recovery xxx

17

Well, I’ve had my two appointments this week. First one with BC nurse. Lovely lady, but didn’t tell me anything I hadn’t learnt for myself. Idea was to go through the ops they wanted to do for me and show me pictures. They won’t do the op and reconstruction I want. Just hit me around the head with the BMI argument; a 160 year old, regularly decried as flawed, calculation, which takes no consideration of your fitness levels. I’d like to see the surgeons follow me around the gym or during a class (sometimes both) and then do 120 lengths of the pool. If I had heart problems, diabetes, high blood pressure, smoked or drank I could understand their problem. 

 

On Tursday, I had received a date of 29th January, for an op that they were willing to do. I’ve told them what I want and who I want to do it (knowing that they wouldn’t), so now I’m told if that’s not acceptable there will be a few weeks’ wait because of the referral. They already know I’m struggling with the delays. Just received the result of the last biopsy and it is an area which will have to come out, so it just confirms my decision to have a mastectomy. Only been told today that I’m HER2 negative. That has taken since the 12th December to come back. They didn’t have an answer for me on Wednesday this week!

 

I feel like I’m being punished, for my BMI and wanting what I want and not what they want to do, with the delay.

 

They’ve now prescribed Tamoxifen for me. I’ve got the prescription, but daren’t take it. It clearly refers to problems with reconstruction using your own tissue, where it can cause increased risk of the formation of blood clots in the small vessels of the tissue flap leading to complications! That’s the reconstruction I want.  Again I wonder if they know what they are doing.

 

Really struggling to get through this week and don’t know how I’m going to cope with more delays. They did tell me I could be referred to a Psychotherapist but it would take at least 3weeks.

 

Last week, when I went for a 3rd time for biopsy, I asked to speak to a BC nurse because I had questions, non was available to talk to me. The radiotherapist, bless her, did her very best as a go between, but it wasn’t her job and it was wasting her time. It didn’t help me to trust them with my care. I feel I’ve been diagnosed and just left to it by myself.

 

Gosh, this is a bit long!

 

Just on my own, hubby and son at work on nights, and feeling really rubbish. Can’t tell you how far from my normal self I feel at the moment and don’t know what to do with myself. I still have no date to get this out of me!

 

 

18

Sorry to hear you are finding this is such a struggle, Fairydust, & I can see how you’re disappointed about the BMI issue, but guidelines are applied, although this can feel so frustrating.
As you have a date for surgery, why not take it? Inevitably there will be a delay if you request a specific surgeon, as obviously you would have to wait for their availability.
I can see what you mean about the clotting risk & prospective surgery, it might be an idea to post in ‘ask our nurses’ or call the helpline here about it.
Wishing you well with it all.
ann x

19

The date they gave me is for a type of operation I don’t want and couldn’t live with. They have only given me information about what they want to do. From my research that’s the one which is easiest for them, not necessarily the best for me. I really have trust problems with the whole way they have dealt with me this far. I feel like I am being punished with more delays for having questions and not being compliant in going with the labels they have given me and with the operation they want to do.

 

The word CANCER of any type and however early caught, leaves the diagnosed person (and family and friends) devastated. The fear that then sets in (despite trying to muster all your sanity, logic and strength) wears you down. You try to put on your brave face for everyone around you, whilst you are breaking inside. You know you are never going to feel safe again. Your whole view of life and the world changes forever (sometimes for the better). I’m sure it wasn’t really necessary to write this paragraph as anyone reading this unfortunately, knows what it feels like.

 

I asked, on the times I went for further biopsies, I have rung on a couple of occasions in between and I asked last Wednesday if my HER2 result was back. Each time I was told it wasn’t. They gave me the result on Friday. It was negative. I had been worrying that it must be positive, because of the time it took to come back. I asked for a copy of my reports. I took them home to read. The HER2 result was back at the end of December! I’ve had 3 weeks of extra worrying I could have been spared. 

 

The doctor only confirmed to me that I have multicentric breast cancer after I told I her what I had been reading. They recommend mastectomy in these cases. That isn’t what they want to do. I’d tried to tell them all my concerns and fears after the op and living with the chance of reoccurrence. They don’t listen and they did nothing to allay my fears. Do they treat us all like we are stupid automatons?

 

I know that, compared to some people’s diagnosis on here, I have a lot to be grateful for. That makes me feel bad for feeling so self pitying. One thing this diagnosis has taught me so far though is that this is a time for each and everyone of us to be selfish. You need to think of number one if you are to get through this. I’m already changed from being the person who thinks of everyone else’s feelings and needs first. Tempering what I say and being that yes person. Well, with the NHS at least.

 

I’ve got the tamoxifen and I daren’t take it! I’ve read the posts on here about it to try to help, I’ve opened the packet, I’ve taken a tablet out and I can’t take it. I had suffered increasingly horrendous menopause symptoms for the some years before I went on to HRT in February last year (I’ve obviously not been taking them since diagnosis). Almost immediately I started to get me back. I’m scared of losing me again, although I’m dissapearing now with this diagnosis (and lack of HRT) If my hormones have dropped because I’m not taking HRT  and then the tamoxifen lowers them further I’m going to be back to being a moody, itchy, sweaty, joint pain ridden, sleep deprived, mental wreck, only worse. I’m not far off that now! That’s not even considering my worry about what it said about the op I want and not taking them.

 

The NHS really doesn’t seem to have got their communication and information with patients right. There’s another category they’ve placed me in. I’m no longer me. I’m a patient, a breast cancer, a body mass index, a patient number, a soon to be basket case, but never me an individual who needs to be properly informed (without the need to research for themselves) and treated holistically.

 

So sorry. My rants are getting longer. My love and thanks to anyone taking the trouble to read these let alone answer them. I just feel like I’m beginning to lose the plot!

 

 

 

 

20

Just spotted my mistake - multi focal not multi centric!