Oh dear - struggling a bit!

[TKN]

Hi Sandpiper,

Good news at my hospital app yesterday, lymph nodes and margins clear and wounds healing nicely. I have an app on Wed to plan radiotherapy and hormone treatment... so I am feeling very relieved as I was getting myself in such a state. I have a nice massage planned for Monday at my local cancer charity centre so Im really looking forward to that.

Hope things are ok with you. Tx

[Nannyof2]

Thank you Sandpiper,

Im home from hospital and have to say that this is quite do-able! Pain wise I only had Paracetamol and I’m doing my exercises as instructed 😇

Rather frustrated by the arm restrictions and drains, but I always want to get back to normal as quickly as possible. Definitely not going to jeopardise the surgeon’s handiwork though!

Xx

[Shablah]

Hi Sandpiper 

Thank you. Hope you are starting to recover and feel a little less tired yourself xx

[Sandpiper]

Hi T,

Will be thinking of you for tomorrow when you get your path results and next part of your treatment plan. Waiting is so difficult. Anything is better than worrying about the unknown. Hope you can get some extra help from your local cancer centre - 40 miles to the nearest Maggies is too far. Support groups can be a lifesaver if you can get to one that suits you. 

Nannyof2 - hope your surgery has gone smoothly or will do - think you posted that it's due around now.

Posden, Wonky, Shablah and everyone on this thread - hope you are getting on as well as you can - with all the ups and downs of our journeys.

Look after yourselves

Sandpiper x

[TKN]

Hi Sandpiper,

I know, a lot for me to deal with, but I think these things make you stronger and able to deal with whatever life throws at you.  Yes of course I wish things were different but they're not....

I'm just wanting Friday to come now so I can find out my pathology results and discuss treatment going forward.

I don't have a Maggies centre near me, I've just checked, the nearest one is in Oldham and thats about 40 miles away.  There is a cancer charity close to me though where I have been for massage, they do a group too so I'll check that out when I next go.

Tx

[Sandpiper]

Hi T,

Really sorry to hear that you've got to deal with PTSD and depression on top of losing your mum and finding out you've had breast cancer. I say 'had breast cancer' because fingers crossed you're already cancer free now you've had your surgery, even though you still have the rest of the treatment to get through. Hope you're able to get some local support group or workshops similar to the ones I've been on - run by Macmillan. Maggies Centres do them do if you have one nearby. They've really helped me.

I think I've gradually felt better without really noticing. I'm very tired this evening, though, for some unknown reason so am off to bed earlier than usual.

Sandpiper

x

[TKN]

Hi Sandpiper,

I agree, it does depend on what's going on in one's life as well as dealing with the diagnosis of breast cancer.  The last few years I have also suffered with PTSD and depression and felt like I was making real progress and then this came along. 

I'm sure I am not alone though and people are dealing with all sorts of things and that is a comfort.

As you said to me, Summertime I will be finished with treatment and hopefully this will be behind me.

It sounds like you are doing great!

Tx

[Sandpiper]

Thanks T,  I'm doing okay now - am booked in for a Moving Forward next month and have been to a couple of nutrition and stress management days which I enjoyed. So much depends on what you are dealing with in your life alongside breast cancer treatment.

Hopefully you'll be able to start your rads in April - they usually start about six/eight weeks after surgery. You'll have the summertime to recover.

Sandpiper

x

[TKN]

Hi Sandpiper,

Thankyou for sharing that, I hope you are feeling well now and back to normal, so to speak! I suppose that most of this year for me is going to be challenging and I just need to accept that and be kind to myself.

T x

[Sandpiper]

Hi T,

I'm sorry to hear you lost your dear mum very recently. It's an extra tough time for you, so take extra care of yourself and don't put yourself under any pressure. 

You asked about my treatment - I was diagnosed end of January 19 so have just had my first post cancer anniversary. I had a lumpectomy in the summer then radiotherapy which I finished the end of October. I've also been on letrozole for a year now - to shrink the lumps before surgery and to avoid a mastectomy and have four more years to take. In lots of ways the times gone quite quickly.

This time next year you'll be able to look back on it all and be able to help others posting on the forum.

Sandpiper

x

[TKN]

Hi Wonky,

Thankyou, it helps to feel that I'm not alone and I'm getting lots of support on here, its a lifesaver!

T xx

[Wonky]

Hi TKN, you are never alone on here. Great responses that you need to rest and recuperate and take things easy. Wishing you everything and many great night's sleep. Wonks X 

[TKN]

Hi Wonky,

Thank you for your message and your words.

All makes sense and I guess because this is something I have never experienced before, I just have to listen to my body and my mind really and give myself a break.  The next few months are going to be an emotional rollercoaster I know.  I lost my dear mum a few months ago too so its like a double wammy for me.

I hope you are ok and coping with your diagnosis/treatment.

T x

[TKN]

Hi Sandpiper,

Thankyou for your message, I appreciate that.

As you say its only 2 weeks since my surgery, but I think I've been feeling abit numb with it all to be honest, everyone keeps saying to me I'm doing so well and being so positive.  I think its probably all just sinking in and last night I couldn't get to sleep and had a really good cry, I just felt very alone with it.

I'm sure there will be good days and bad days though.

When will you be starting your treatment? Hope you are coping with things and feeling positive.

T x

[Sandpiper]

Hi T,

Don't expect too much of your self - you only had surgery less than two weeks ago, it's very early days recovery wise. When you feel tired, you just need to rest and begin to recover - it can't be rushed. Emotionally you have, and are going through a lot and to be diagnosed around Christmas time is probably the hardest time to get bad news. For me I first found the lumps before Christmas and was diagnosed in January - not great timing!  Like you I was ER positive, HER 2 negative. You've cleared the first step of treatment and hopefully the margins and will be clear if Its a lumpectomy you've had, plus any nodes you've had removed. That'll be a big relief. You are definitely not alone in feeling as you do - I think most of us are or have felt the same.

Don't be hard on yourself for feeling as you do - it's part of the journey.

Sandpiper

x

[Wonky]

Hi TKN,

In my experience it is totally normal ( and allowed!) to feel exhausted by something ( short walk to post office). The emotional strain of diagnosis, and all that follows, takes its toll. The stress releases very high amounts of cortisone into our systems, and that is a lot to contend with physically, on top of what you are dealing with emotionally. It's 'the perfect storm' (circle) and not easy to deal with. X 

[TKN]

Hi there, I too was diagnosed with primary breast cancer just before Christmas and also was surrounded by family but still felt very alone.  I had a lumpectomy on the 16th January and I have my post op appointment on the 7th February to find out pathology results.  I am feeling positive all with be ok but am expecting to have radiotherapy and hormone therapy as I am ER positive, HER 2 negative.

I'm just having a bit of a low day where I am feeling exhausted, I had a walk out to the local post office, about 5 minutes away and had to lie down when I got back. I feel like I'm never going to feel like my old self again.  

Anyone else feel like this?

T x

[Shablah]

Hi Wonky

Well I'm only on day 4 of Tamoxifen. I'm trying to stay fit or fittish at least, while I prepare for my rads. I walked 10,000 steps today and do that most days but I did that anyway before I was diagnosed. Do you do any exercise? Is there anything else I can do to prepare myself, all advice gratefully received! 🙂 I'm really dreading radiotheraphy because I'm a right wuss when it comes to anything medical.

I don't blame you for being kind to yourself and curling up with a book or whatever you feel like doing because this takes a long long time to recover from mentally, emotionally and physically. I really want to be able to read a book again and switch off the world, even if it's for half an hour but my brain won't concentrate on anything for longer than 20 seconds at the moment, I think really I'm still in shock to a certain extent. I'm using a mindful app but I'm not sure how much its helping me. Hopefully things will improve, and I'm hoping Tamoxifen will be a smooth ride for me that would be great, but it's still very early days for me x

[Wonky]

Hi Shablah, 

I have had a long weekend ( off work) which I needed, because it is still early days and I realised you have to pace yourself or you risk a crash & burn. 

Maybe I'm just a lazy woman these days, or maybe laying in bed with a good book is what I need, still, to recover physically and emotionally.

Think the Tam slows you down in any case. But glad you are getting on with it not too badly. 

X

[Shablah]

Hi Wonky

Yes it's a very big kick in the teeth isn't it but onwards and upwards xx

How is everyone? Hope you all had a good weekend.

I started taking Tamoxifen at the weekend. I'm a bit achy and have woken up during the night quite a bit but so far that's it. X

[Wonky]

Shablah,

You are getting there, one step a day. Next day, next foot. And repeat. Wobbles come with the territory!

X

[Shablah]

I forgot to say, I just turned 50 at Christmas and am still premenopausal, hence the Tamoxifen xx

[Shablah]

Hi Wonky

Thanks for the info about Tam. I think that's true what your onco said, I did read lots of negative reviews about it on the internet but thinking logically people only do post about it when there's a problem with it, so that scared the hell out of me and we only seem to look at the problems when we are feeling our most vulnerable, it's just how we function as people I think! 

As for me I was diagnosed grade 2, stage 2, beginning of Dec, I had a lumpectomy end of Dec, starting rads in Feb. I feel blessed that I don't have to go through chemo.

I'm feeling better today after the wobbly time at my planning appointment yesterday. I'm not sure why I was so emotional yesterday, I didn't expect to react like that. The staff were all fantastic with me. I am also very grateful for being treated as quickly and as well as I have been so far. Xx

[Wonky]

Hi Shablah. Three days on the sofa, says it all, the devastation. But yet we all manage to keep going somehow. You are being true to your feelings and rationalising your thoughts. Typical of so many on here who clearly find amazing reserves of strength and soldier on. Our nails might be in need of a coat of varnish, the hoover might be feeling lonely, but we get there! 

So, to answer your Q about 'Tam'. I can't say nothing happening, as I do feel stiff and achy, but totally doable and worth it, given what it was prescribed for!!!!!!! 

I think it takes a while to accept that, predominantly because every day, for years you get that 'little reminder'. But there are diabetics on daily meds for life ( and other examples too) so I guess you adapt, and if side-effects are manageable, you are winning.  

My oncologist commented that some patients get overly concerned about what they read on the Internet, about Tam and I totally got what he was saying, ie trust oncology experts and look at the drug in a rational way. My absolute terror of chemo ( not cos of my hair, because of the drugs) maybe helped me put Tam into perspective and see it as my friend.

You don't reference your age or if you need surgery. Hoping they get you sorted with rads & Tam. They really are incredible! X

[Shablah]

Hi Wonky

Thanks for sharing, it's fine to share. You been through a whole pile of sh**. It sounds extreme but you're through that now and it sounds like you are doing great. Even if it still tortures you mentally. I totally get that! I think we are all the same and forever changed by BC, at least I think I am! 

My hospital is also a one stop shop, so to speak. I had my first mammogram, ultrasound and biopsy all within 2 hours and I didn't even know I had a problem at all! I really wasn't expecting any problems either, I had gone to my GP for something else entirely and just happened to mention I had an indentation that has appeared on my boob, she examined me and said I should have a mammogram just to check things out, that was on the Monday morning and on the Thursday morning I went to the one stop shop breast clinic and was given the news I "likely" had breast cancer. I swear my whole immune system collapsed, I also had a problem on the other side with calcifications so I then had to go back the next day and have a stereotactic mammogram biopsy on that side but thankfully turned out to be benign.

I've never ever felt anything like being given that news. I couldn't eat, talk or function on any level for the first 3 days. I couldn't even get upstairs to bed I laid on the sofa day and night, in a zombie like state. Now I'm 2 months on and will be starting rads in Feb. I'm not myself as I was and I'm not sure I ever will be again but I'm trying and I've just started taking Tamoxifen too. How are you finding it? Any problems so far? 

[Wonky]

Finished rads 31/8/19. Prior lumpectomy and lymph nodes out. Now just Tamoxifen. Sounds easy, and my heart goes out to women who have dealt with much more. 

Tumour was (I'm told) in a rare place, so the op was pretty extreme as surgeon didn't have a lot of room for manoeuvre. Tbh hun, I'm not sure about anything as I was so panic stricken. It does make some sense why everything they did was super-fast, the tumour was very aggressive and sitting on my breast bone. It was actually bulging out of my body! I guess because it didn't grow inwards into my heart, ribs etc, so how lucky am I!!!!

I honestly don't understand enough, but it was to me, striking that from taking a sample to telling me I had BC, took just 30 minutes. Oh my, they didn't dally about!  But then I rationalise that in that the bleepy thing ( the tumour) was practically waving a flag, saying "look at me". My GP took one look and told me to " prepare for the worst". I made enquiries about my funeral.

But she was seeing, very clearly, that nasty little B which was making itself at home. Fallout from the  whirlwind which followed is simply something I have to gradually adjust to. 

Sorry for offloading details, but I am still very scared. I have constant pain and discomfort because of extensive nerve damage. I kind of feel I'm more in the mastectomy than the lumpectomy category. Emotionally. I lost a significant amount of breast tissue to make the margins. They debated the margins and my needing chemo for weeks. I was beside myself. Eventually they took the "borderline" decision to go gently and hope. But as much as I'm grateful, that means I have a lot to manage, as regards coming to terms with recurrence scenarios. And the constant, daily physical pain. 

Sorry Shablah, this is an extreme post and NOT directed at you. But yes "oh dear I'm struggling a bit" !!!!

[Shablah]

Thank you Wonky. Glad to know I'm not the only one eating junk tonight. 😉

How far in to your treatment are you? X

[Wonky]

I've just had a Dominoes pizza. Naughty (too) but nice.

Prep for rads's is an assault-on-the- senses, so some tears are perfectly normal! 

Glad you got back to planet earth and many hugs for your treatment, going forwards. X

[Shablah]

Thank you. Yes I have to look at today as a positive step even though I don't feel like it today. 

I'm now calm again and coming back to myself (if that makes sense) and thinking it's one step closer to finishing treatment.

Also I was very naughty and bought myself a big dirty greasy kebab for dinner, and before diagnosis I wouldn't have even eaten a kebab at all! 

Onwards we go....tomorrow is another day 💪

Wishing you all a good weekend xx

[Posden]

Oh Shablah, bless you - big hug coming your way. 

I think that's so understandable,  we don't half get put through the mill in this process and sometimes it's just one thing too much. I was like that before this surgery, the registrar was going through all the things that COULD go wrong, and for some reason it just tipped me over a bit and I started to cry. 

She understood and just brushed over the main points and was altogether more human. 

You know you'll rally, just allow yourself your wobbly moments because they're utterly normal. This isn't easy but it'll be behind us one day. X

[Shablah]

Good to hear you are doing well Posden. 

I had a bit of a wobble today. I had my measuring and fitting appointment (otherwise known as your planning appointment!) for radiotheraphy this afternoon. Had to practise the breathing during the scan and I felt like I was pulled, prodded, poked, drawn on, tattooed and all the rest of it. The staff were all really great with me, very kind and considerate but for some reason I got really tearful. I don't know why, I've done really well so far with all the treatment, surgery, never ending appointments and things we all have to put up with. Just not a good day for me today.  Hope the rest of you are well xx

[Posden]

Hi ladies

Lot less sore today.

I'm doing my exercises and trying to remember not to lift the dog. 😊 All ok 

[Nannyof2]

Bless your heart - it’s the position they had your arm on the operating table to a large extent, as well as tootling around your armpit 🤨

Youre doing just great - keep it up! X

[Shablah]

Hi Posden 

No need to lie here! Shout and scream as much as you like, we get it 😘

Those exercises are really hard at first but no matter how little you think you are doing make sure you keep them up, they really are important and they get easier bit by bit each day. Glad to hear your doing well though and EVERYTHING is doable, you've done the hard bit already by having the surgery so well done, 👍 take it easy 😘xx 

[Posden]

Hi Shablah

Kind of you to think of me!

I'm not going to lie, in terms of discomfort I'm finding the ANC worse than the mastectomy, because it's made my shoulder very stiff. 

However, still really early days, I'll keep doing the exercises and plod on. It's all doable 😊 x

[Shablah]

Hi Posden

How are you feeling after your surgery? Hope your doing OK xx

[Posden]

Funnily enough I'm much better in the evenings too, it's the mornings which really get me and I'm really reluctant to come out from under the duvet and face the day. I hardly recognise myself and I'll be so so glad when we can look behind us at this in the wing mirror. X

[Nannyof2]

I think for me, the early mornings are the worst....I’m still working and that keeps my mind focused all day. 
Evenings are lovely & cosy watching TV with my dogs and enjoying a glass of wine ☺️
I wake before the alarm and sadly realise I still have bc....then the thoughts take over & I have to really force myself to behave! 
I agree that we’re super heros and flipping wonderful going through all of this - its a complete roller coaster & we’ll all be pleased to get off! X

[Shablah]

Posden

Yes there is so much waiting around. I find it really difficult during the day as everyone is at work and there's only so many times Phil and Holly can "entertain" us!! I find it hard to concentrate at the moment so watching a film, reading a book and usually sedentary pass times are not working for me at the moment either 🤷‍♀️

[Posden]

Thanks Nannyof2

We really deserve super hero medals after all this. You need nerves of flipping steel and the patience of a saint! X

[Nannyof2]

Sending big hugs for tomorrow - I’m not far behind you and soon we can say we HAD breast cancer ☺️
We’re all here for you & be in touch when you feel like it x

[Posden]

Thank you Shablah,

I had spent  removed 5 weeks ago so that's probably them just starting to try and mend now- and tomorrow they'll disturb them all again!

There's so much waiting around in this isn't there? It's horrible x

[Shablah]

Posden

I'm not much help with ANC as I didn't have one but I have had some stabbing pains under my arm. I asked my oncologist about it today and she said it is the nerves all knitting back together and the stabbing pain is quite common. So it probably isn't in your head at all but you would be anxious, we all would. All the best for tomorrow xx 

[Posden]

I have ANC tomorrow and I'm starting to get really anxious. I've had this horrible stabbing pain in my armpit today which hasn't happened before. I don't know if it's my brain playing tricks or whether it's just nerve damage from the nodes they removed during the mastectomy- but it's beginning to freak me out!

Has anyone else had an Anc separate from OP? 

[Shablah]

Yes I understand completely nannyof2 because I've recently been through the stages you are going through now, as have a lot of the ladies here. You will get through it, bit by bit, just like I am. You already have been told you are HER2 negative that's a HUGE plus. I only found that out today that I'm HER2 negative after some tests and nearly 7 weeks of waiting and for me that's another fear laid to rest and a big big relief.

You, like me and most of us here will feel better once the surgery is over and you know the most of the cancer is gone from your body. I know that this waiting is agony, there isn't a thing anyone can say or do at the moment to make you feel any better but just hang in there, as the treatment starts you will get stronger xx

[Nannyof2]

I’m glad you will - I’ll probably be the same with Anastrozole! 😂😂

My surgery is in 2 weeks and I’m already worrying about lymph node involvement - I don’t know why I keep doing this as worrying won’t change anything at all 🙈

I just need to get through this next step and then on to the next anxious period! X

[Shablah]

Thank you nannyof2. I will be taking it, it's just worrying. My oncologist said the alternative is monthly infections to the stomach which is not very good for me over a long period - 5 years or beyond - which I know is right but still. I will pick up my prescription on Friday at my next appointment. When is your next appointment? 

[Nannyof2]

Hi Shablah - I’m delighted that everything is going well & that things are moving along 🥰

As for the Tamoxifen - take it!! It stops cancer from recurring & any side effects can be managed - honestly!

(I guess anything new is scary though) xx

[Shablah]

Hi ladies

I had my first planning appointment today. I'm due the CT scan and radiotheraphy planning appointment on Friday. Mines on the left so I have to practice the breathing. I saw a nice lady oncologist today who gave me my first prescription for Tamoxifen. For some reason I'm terrified of starting to take it. Anyone else has the colly wobbles over Tamoxifen? I'm not sure why I'm fretting over it 🤷‍♀️

[Wonky]

Not dissing the serious points on this thread, but fascinated about the bums. Worth a peek ( for a laugh) ?