**Tamoxigang Thread 52** With virtual tea, cakes and chat for all with cancer concerns

[Lilymaid]

We were almost at our 1000 post limit for Thread 51 - hope the title is OK but wanted people to know that we aren't just about people on Tamoxifen but for all with cancer concerns!

Hello hope I'm ok to post here?

My BF in the world had been to the GP as found a lump in her breast. From what she said GP didn't sound positive for good news
Has an appointment for in2 weeks.

What helped you in the early days pre diagnosis? What can I do to help her? She's late 30s with two DCs.

I went round to give her a hug and have come home and cried

Hi chesty, how nice of you to be so concerned. There still every chance she will be ok but if not continue with the hugs. Ask her at every opportunity how she is and take your lead from her. If she wants to talk then let her, if she changes the subject then take the hint. Keep asking for days, weeks and months. It's very common for people to stop asking as soon as treatment stops, but it takes years for the emotional distress to lessen. It consumes you and it really hurts when people act as if its all over after a few months.

I feel stupid being so upset but we've been friends 20 years and really close.
Being HCPs isn't helping.

Two weeks seems such along time for her to wait to see someone but I know it's normal.
I thought GP would just say it's a cyst.

Thanks for the tips.

Yes Chesty Nut PLease keep being there for your friend. You sound lovely.

Thanks

She's like a sister I never had.

Bosh I'm glad that you enjoyed your evening and were able to eat :) My dh and DS love sushi, I'm not keen

Chesty nut you sound like a lovely friend :) I hope your friend will be ok but if not the treatments are very good these days. The waiting was a surprise to me too, I had to wait 4 weeks from diagnosis to my op, I'd always thought it would be done really quickly.

Chesty what a lovely friend you are. Pre-diagnosis was a very worrying time and I just remember taking it day by day and not talking about it much in case the news was good. After the cancer diagnosis I found it most helpful for people I'd told not to pussyfoot around me, to ask me and discuss my treatment etc as if it were a normal part of my life. One friend never talks about my illness and so I feel I can't be myself with her but other friends matter-of-factly ask me how chemo was, can they pick up DD, but it's all interspersed with the latest movies we've seen, restaurants we've eaten at, what the kids are up to. I feel much better with these friends.

I hate anyone except my DH expressing fear, sadness etc about my situation. I'd rather they deal with their worries about me away from me because I have my own worries and don't want to have to deal with their's. But that's just me. Nor do I like people being unrealistic about my prognosis and saying "You can beat this! You'll be fine!" If my cancer was caught early then this would be fine but everyone knows I have advanced disease and realistically it's unlikely to "be beaten". Again, that's just me.

You really do sound lovely. Take your cues from your friend. Listen more than you talk.

And never forget a) her lump may be benign b) if it's cancerous, cancer treatment is so advanced these days and lots of cancer is curable :)

thanks bsssh

Yes I'm sure being normal around her is the way to go with an extra splash of concern?

Oh yes, concern is always appreciated :)

How did you cope with the waiting?
She didn't sleep at all much last night, do you think a sleeping pill might be helpful?

Hi chesty,
The time spent waiting for a diagnosis is awful. Imagination runs riot and googling is hard to avoid and usually scary. It really isn't to be advised as it's impossible to know what might apply at this stage and lots of the info is out of date anyway. Breast cancer care and macmillan are the best ones and they also have telephone helplines answered by nurses who can provide info and support. A number of people on this thread have found them helpful.

Sleep will be elusive. GPs will consider something to help but the only thing that really helps is getting the investigations out of the way, getting a diagnosis and having a plan. That is likely to happen quite quickly once your friend's first appointment comes through but of course every day seems like an age when you're waiting and frightened.

She needs to know that she won't continue to feel as awful as she does now. Whatever the outcome she will feel better once she has a plan. Many lumps are nothing to worry about and where that isn't the case, treatments are very effective.

It is a horrible experience, we know just how vile it feels. Having good support around you is so important. I have a few close friends who, with family and my breast care team, have got me through. It's good you are there for her.

Thanks marshy

I just want to be helpful and not say the wrong things IYSWIM?
My first attempt at it'll be ok, it's maybe a cyst were crap as GP told her doesn't appear to be a cyst or fibroadenoma

Of course she can't know until biopsy but doesn't inspire hope.

Looks like it's been a busy few days, not sure I'll be able to catch up but will try! Welcome to all the new folks, sorry you've had to join us here. But it is a great place for comfort and support.

Chesty, I wish I could wave a magic wand and help your friend but unfortunately I don't have one :(. The waiting is tough and there are many sleepless nights, she could always try one of the over the counter sleeping remedies and see if they help. But the only thing that will really help is time. Time to either give her good news or time to hear the worst and be given a treatment plan. Either way, it will get better.

Bssh, glad you were able to get some enjoyment for your meal out. Hope you've had a lovely day with dd catching up on lots of giggles

Marshy, 2 weeks down of being 'normal' - well done :). Glad everything is just about holding together

Great news for both mrs and nanny, it's always to hear positive results

I'm off for my first rads in the morning, 20 sessions in all. I'm not really going to be working for the next 6 weeks - first time I've taken a significant block of time off work since diagnosis last July (I kept working through chemo thanks to my boss being crap about sick leave, all sorted now). I was joking with a neighbour this morning that if the weather stays nice, my new healthy living regime kicks in and I grow a lovely pixie hair cut, folks at work won't recognise me when I go back!!

Hard to believe, this time last year I was about to embark on a 12 week training programme for a 50km charity walk which I did just 3 days after diagnosis. Happy memories

Hi All, hope you've all had a good weekend.
Great news mrs and nanny.
gilly, I had a PICC line and it was removed at the end of last chemo session. It was just pulled out and was quick and completely painless. For me, it was a real marker that my treatment had finished and although I still needed to go through chemo hell one last time, not needing to wrap myself in cling film and having a proper soak in the bath was a really significant event.
wallaby hope you are still feeling okay, if you are now suffering from SEs, hang on in there - it will pass.
chesty my friends my a massive difference to my state of mind throughout my treatment. Do be prepared for the long haul, those that got it most right for me are the ones that remembered when I had treatment or an appointment and got in touch appropriately. Not expecting a reply but just letting me know they were thinking of me. Also don't offer to do things for people, just do it! One of my friends turned up in her marigolds and deep cleaned my kitchen, if she had asked I'd have refused but it was lovely to have a sparkly kitchen for a few days. Another turned up with several meals for the freezer - wonderful people. I was also really, really touched by my work colleagues who all kept in contact regularly and narked the end of my treatment with a lovely card and flowers - a lot of other people had got bored of the whole thing by then! Lastly, don't try and reassure her by belittling her symptoms or diagnosis, when she is afraid and in 'funeral planning' mode, being told it might not be as bad as all that etc. might be irritating. You sound lovely and I am sure you will be rock for your friend and it will bring you closer.
minty I'm going through a lot of anniversaries at the moment, it is all very poignant.
Happy birthday to malt's daughter. My DD1 is also 16 this week do they practically twins.

Thanks Buns she had a lovely day, can't believe she's 16 !

Back to early starts, packed lunches, work and school today ugh. Though I'm not at work till Wednesday so not dressed yet

Love to all

Off for blood tests and a scan today. Results on Friday. Suspect I may have to arrange a blood transfusion as my haemoglobin may be very low.
Pig farm was good. Weather was excellent - ate four cream teas in four days (as well as cooked breakfasts most days) so now need to diet!

Hi lily, thinking of you today, hope you won't need too much interference. Pig farm sounds interesting. We only managed one cream tea in Whitby last week but it was sooo good. Cream on top!!

Dd2 starts her last ever term at school today, only five more weeks of making packed lunches for me. She's finally firmed Leeds instead of Nottingham. Very hard choice, equally good places and courses but distance became the deciding factor in the end.

Hello to everyone.

Morning all. Back from a break away and had such a lovely time with lovely weather too.

Need to do a bit of catching up but malt glad your daughter had a lovely birthday.

Good news for Mrs and nanny.

Gilly- I had my line out two weeks after the last chemo in case of needing it for an infection but completely painless and I was so glad to have a nice bath again.

Minty- hope rads go well today.

Lily- hope tests go smoothly. Four cream teas sound great.

Wallaby- hope side effects are leaving you alone and you don't feel too bad.

Chesty- lots of good advice above. You sound like a great friend.

After being away I need to get sorted and this morning after nearly a year my period arrived back!

Hope everyone has a good day.

Bleurgh - day 4 post 1st FEC, can hear and feel my pulse whooshing round my body, mouth like I'm sucking a penny and possibly a small axe is embedded in my head..... But apart from that, could be a lot worse.....!

Oh wallaby that sounds tough, my sympathies. It will get better though and before you know it you'll be back at the hospital asking for more!

Speedy glad you had a good break, great timing with the weather that must have helped

Mrs, hope DD manages to enjoy her last term in amongst all the hard work. Will be very strange for you not doing packed lunches but very welcome I'm sure

Lily good lucky with the scan and hope you get good results on Friday.

So I'm 1 rad down. Felt very strange going back into the world of treatment again after such a long break. I can imagine it will be even stranger when I come out the other end

Glad first one over Minty. It does feel a bit strange coming out the other side, although I'm still seeing people about my heart/herceptin discussion.

Wallaby- poor you. Hopefully it won't last long. By a week post chemo I was starting to feel better. The mouth thing is horrid- I used to eat lots of salty things as I could taste them! I used to swill salt water around my mouth too which helped a bit; think someone on here suggested it.

speedy Yey for the return of periods (though I have to admit I am glad I don't have mine!)
minty glad the rads went okay... I remember it being very strange returning to chemo after a long break but 6 sessions in it's remarkable how quickly I got back into the rhythm of it.
wallaby urgh the mouth thing is an awful side effect of cancer treatment. I love eating and am a real foodie and sore mouth or tasteless tastebuds are the worst side effect for me. I generally am able to keep on top of it with mouth washes (sucralfate, Difflam and caphosol) and tablets though - do ask your onco / GP to give you all they've got! I don't use them all at the same time but something generally always works.

Had my CT scan results today and my tumours have responded well to current chemo - shrinkage all round. Still incurable but am very happy that I can continue chemo (means my options are not yet running out!).

Hey everyone - it generally feels quite uplifted in here today - good to see spirits up! Apart from Wallaby though - sorry to hear you feel rough. Will it get worse before it gets better?

Chesty I am pre-diagnosis at the moment, sort of, and I would recommend you just let her talk at you, and get all her feelings out. Tell her she's amazing and you will be with her every step of the way, but don't tell her "you'll be fine" or "breast cancer isn't as bad as it used to be" - she might be and it probably isn't, but she might feel belittled in her fear.

I received the most extraordinary call on Saturday, from a friend who works in our NY office (someone who I worked quite closely with for a few months on a pitch in the US last year). He told me he wants to fly me and my whole family (DH and 3 DC) to the US so I can attend the Sloan Kettering Hospital in Manhattan - the #1 cancer facility in the world. Through my company, they're offering to pay for an apartment to house us all, pay all the medical bills, arrange a visa and job for me at the NYC office for the duration of the treatment, and facilitate enrollment of the kids into the Lycee. I was absolutely floored. I said that I didn't even know if that was all necessary as they are still trying to figure out what kind of cancer I have, the grade, whether it's spread etc., and that I needed to speak to my husband. My colleague said he was starting the paperwork anyway, so that if the diagnosis came through this week, that we could all just jump on a plane and get started.

I told my husband a few minutes after I got off the call and he started to cry (the second time since I found the lump 5 weeks ago today) and when I asked why he said that it is starting to now feel real. Even with no firm diagnosis, when someone does something like that for you, it's because they think you might die. And he really hadn't thought it all through like that yet I don't think.

I googled Sloan Kettering and found this link about Jo Malone phoning up Evelyn Lauder and telling her she had an aggressive form of breast cancer - within 24 hours Lauder had put her on a plane to the Sloan Kettering hospital!

Jo Malone Link

I am walking around in a daze. WTAF can't anyone tell me what it is I have? The doctor thinks I have grade 3, triple negative breast cancer, but can't confirm it's not leukemia. I am just so tired of the not knowing.

Scan done so hoping it will show no change. Blood tests show haemoglobin has not gone down so no transfusion - can only put this down to taking a Spatone sachet a day to maintain levels.
Chemo mouth and losing sense of taste is a sad part of chemo. My normal sense of taste is still missing - so high end tasting menus are wasted on me. I can eat Haribo for England but no longer enjoy wine .
This must be the only board where we look forward to the return of periods!