Hi Mrs Fingers,

It is early doors still and it sounds as if you are doing well. It was 6 weeks after surgery before I was allowed to drive.

What I found most difficult was driving over speed humps. I can still feel discomfort in my breast at times 7 years after my last surgery. There is always a pain in my arm either below my elbow into my hand or under my arm and down to my elbow. This is something that I have learnt to live with. The bruising will go away with time but if you want it to go quicker, even this long after the event, it might be worth taking some 6C Arnica pillules. They are great for reducing the effects of bruising.

I suspect that the chemo and radiotherapy plus hormone therapy is a belt and braces approach because of the infected lymph nodes - better safe than sorry.

I hope that it is not too long before you can take up the wheel again.

Kind regards,

Jolamine xx

Venting alert!!!

Well I’m back on my feet after surgery and now facing 6 rounds of chemo (FEC-T). Not looking forward to this at all but needs must....

There is also talk of a CT scan to rule out any spread, which brings with it a fresh wave of scanxiety.

Friends don’t get it. Most thought surgery meant job done, cured. Nobody really gets that my surgery was just the start. That as a cancer patient you’re never really free. There’s always a shadow lurking, a chance of spread or recurrence.

Instead I’m enduring the usual cancer *** bingo platitudes:

You’ll be OK (really, are you mystic meg or an oncologist?)

Be strong (so cracking up is not allowed then? Fantastic news).

Stay positive. (The next person to say this risks a slap!)

You might not lose your hair (seriously folks, if I had a pound for each time I heard this...Let’s just agree I will lose my hair but in the grand scheme of things it’s not a big deal).

Oh, your friend Jane got through it ok? See!!! So will you! (Yup, because our circumstances are obviously identical....not).

And my personal favourite: There’s no need to fear BC these days. It’s just like diabetes. (Seriously, WTF!!!)

And the thing is I sit there and take it all in because in a strange way I’m glad of the comments. It comes from a place of people caring. Wanting to make me feel better. Wanting to say you’ll get through it. We’ll help you through it. I’m grateful for that.

In fact, any comments, however crass, are better than nothing at all, AKA Radio silence. (There’s been a lot of that too). It’s a horrible thing this cancer business. Nobody knows what to do or say for the best. 

But this is life now isn’t it? The so called “new normal”. Years of treatment and follow ups. Living life one scan away from a totally different future and a really difficult conversation with my kids.

On top of everything else my dads been taken ill and needs an op. I’ve been feeling very anxious for the last few days and on the verge of cracking up. I’m guessing everyone has their breakdown point in this hideous ordeal. This could well be mine.

Obviously I can’t crack up though, as I need to “stay strong”. Arghhhh!! 

I was going to apologise for this post but a wonderful lady going through the same thing said never apologise. 

I guess it’s just a dip in the proverbial emotional rollercoaster. What goes down must come up again. Tomorrow’s another day and all that. (Gosh I’m creating another *** bingo card here, lol!).

Thanks for listening all.

Hi Mrs Fingers,

You should feel a little better after that vent!

Everything you say is so true. So many comments seem totally crass at times. These usually come from the fortunate people whose lives have not been touched by Cancer. We cannot really blame them for their ignorance. Cancer is one of these diseases which has been whispered about for years, but never openly discussed.

I am a very straightforward person and, since I was diagnosed, I talk about it quite openly to all and sundry. At first this was a nuisance, as I wasn't really in a place to discuss it, but it is only by educating people about Cancer that they will begin to know a bit more about it. You are still in the eary days of this disease, but you will find now that some so called friends will drift away, through the embarrassment of not knowing what to say to you, whilst you will also find new friends from unexpected sources, who will offer you sterling support.

How did your surgery go? Again, people tend to think that you are fully recovered after surgery - if only it were that simple - they know nothing of the various shadows that linger with us for life. How soon are they talking about giving you chemo?

I love your word 'scanxiety' - it's brilliant.

I am so sorry to hear about your dad's illness and hope that he'll get his operation soon. I lost my mother-in-law 2 weeks ago. We have been nursing her at home in a hospital bed with carers coming in 3-4 times a day, for a number of years. She was 94. Throughout these years I have felt like you do now, but you will get through this. If you find it all too much to cope with, have a word with your GP or your breast care nurse, who might be able to give you a mild antidepressant to help you through.

You are quite right, there is absolutely no need to apologise for your post - this is precisely what this forum is for. You will have good days and bad days - here's hoping that tomorrow is a brighter one.

Kind regards,

Jolamine xx

 Good for you!  I hope you don’t mind but this made me smile, you are so right.  I am not a cancer sufferer  but I am supporting my husband and  I swear to God if I had a pound for every time somebody said  something stupid I would be a millionaire by now, and the really really ironic thing is  they are the type of silly stupid things I  used to say!  For me, “I’m so sorry you’re going through this we are thinking of you” is all that’s needed. 

 Perhaps someone could design a badge for us all to wear that says “no cliches please“

 Anyway, I hope venting made you feel better.

 I am so sorry you’re going through this, I’m thinking of you. 

 Ruth x

Thanks [@Jolamine]‍ and [@SusanRuth]‍ for your kind words. It really helps. I love the badge idea too!

I've recovered pretty well from the surgery but not 100% as you say Jolamine. People expect you've snapped "back to normal", because you look OK outwardly...there's nothing obviously wrong with you. I find my energy levels are still low though. I tire easily - not surprising as I'm still healing. I went for a night out with friends on Saturday which was wonderful, but involved a non-stop day and night of being out and about. We must have walked several miles when I really just wanted to lie down and have a nap. The surgery side is still quite swollen too. It feels like there are two distinct halves to my body, the new boob and the rest of me. I can't really describe it. With each day things are getting better, but there's still a big scar and scabbing. I'm aware that I'm still recovering from major surgery at the same time as facing the onslaught of chemo. It's quite scary.

I'm really dreading the chemo. I have a sense of doom about it that I can't shake. This to me is the bit that makes you look and feel like a cancer patient. Yes, I know no two people are the same and we can all have different reactions, but the general theme seems to be week 1 you'll feel like rubbish. You'll probably feel sick or actually be sick. It might feel like the worst hangover of your life, just without the party beforehand. Not to mention the real medical risks. Blood clots. Heart problems, lung problems. Neutropenic sepsis. Loss of hair. pales into insignificance, though I'm sure it will be hard when it happens.

I don't want to hear that "the side effects of chemo are not that bad these days". (Excuse me, what do you know about the side effects of chemo?). I don't want to hear that "you might not be that badly affected/you might be lucky/you might not lose your hair etc". (I hope so too, but I've been given the information leaflet and the chat from my oncologist and it wasn't sugar coated).

What I'd like is for somebody, anybody, to simply acknowledge what lies ahead. That I'm going to be poisoned from the inside out. That there'll be days or weeks where it will be an effort to move from the sofa. That there ARE side effects and they could range from extremely unpleasant to downright life threatening. That I'll be worried each time my kids come back from school with a bug. That a simple bug I'd normally fight off easily could land me in hospital on the critical list. That my life will be immesurably more difficult for the next 18 weeks. I'd like just one person to say this is no walk in the park and they'd be scared too...

My most unfavourite situation is this:-

You’ve dragged yourself out of bed or off the sofa and slapped on the make up to cover the signs of no sleep and anxiety. You’ve made a real effort to put half a spring in your step and pin a smile on your face. You go out to meet the world and someone says....You’re looking well...(with a note of surprise and pity in their voice). I just smile, shrug and say... That’s obviously what cancer does for you. You should try it. It shuts most people up because they just don’t know whether to laugh or not!

Sundial

Thanks for venting MrsFingers. Your original post with all the things people say really made me smile. I think I'm at a similar stage to you, though with a different cancer - invasive ductal, ER+, 1 lymph node (amazing how quickly we can classify ourselve by cancer type now).  I'm still waiting on that dreaded meeting with my oncologist for the results of the oncotype DX genetic test on the cancer itself. I've been told that the balance of probabilities are that I won't need chemotherapy - but as with all statistics (like the 1 in 8 women who get cancer, when you happen to be that one), there is a real possibility that I will need it.

I really get the low energy levels you mention. My op was 14th September, and as you say, you look back to normal so people expect you to be. I had to draw the line yesterday when I'd been invited to a birthday celebration in London which would involve a 30 minute car journey, a 35 minute train journey, a tube journey, a walk around an art gallery, another tube then dinner then tube, train and car back home by 11pm. I've got it wrong a couple of times since surgery, so I use the BC words to decline and had a relaxing day at home on my own. The advice on this forum not to be afraid to use the cancer as a reason to take care of yourself resonated with me so I've been trying to do that. Even I forget sometimes.

People at work have been supportive, but some have said things like 'so and so found it helpful to come to work during radiotherapy/chemotherapy. He didn't have to but he like the sense of normality'

They mean it well, but I find myself wondering if they think that I ought to feel like that. It is amazing how little things people say with the best of intentions have an unintended effect. 

The best of luck with your chemo. My mother had it for her BC so I know exactly how awful it is.

I totally agree that this is no walk in the park. Like you, I'm tremendously worried and really hoping that my results will not advise chemo. However if they do, then I'll be taking this journey alongside you. 

Best of luck!

Hi [@Gadgetgal]‍  You've just described my Saturday night! No wonder I'm tired.

I had hopes for the Oncotype DX. Unfortunately I had a bit more lymph node involvement and some other concerns on my pathology report too, so that's why I'm going down the chemo route. I know it's the right decision though it doesn't make me any less nervous about it. I hope your Oncotype DX results are favourable.

As for your comments from work about coming in during treatment - yes, not the first time I've heard this sort of thing. It feels like others just want to downplay cancer, sweep it under the carpet and pretend it's not happening. I can't say I blame them really; I want to do that most days myself! But yes, it does create that sense of failure and guilt if god forbid you're unable to get off the sofa, or you can't always "stay strong". People don't really think about this when they say these things...

x

I'll remember this one [@Sundial]‍ - it's bound to come up! :D