All the fives... Tamoxigang cancer support thread 55

[WhatWouldLeslieKnopeDo]

Welcome newbies and oldies to our 55th thread!

Our previous thread is here.

If you have any sort of cancer please feel free to join us. We are always happy to offer a hand to hold if you're waiting for test results too.

There are no stupid questions here, and there will usually be someone who can answer, or point you in the right direction.

Lily i hope all your scans are reassuring. I watched Five( did not plan to) and cried by eyes out. Once upon a time i would have watched a movie about people with breast cancer and felt sorry, but that is also me now. Life tossing us different roles all the way.
Rusty, my thoughts are with you. Hoe you and your baby will do alright. As the others said, chemo really is doable. Going into it you feel quite anxious, but once you go along, you will kow what to expect and how to cope.

Lily hope you're scan results are good, scanxiety seems to be a big part of our lives now doesn't it? I've got to go back to see my surgeon on Friday and get the results of the lumpectomy and get the dressings taken off and check how everything is healing. Rustcohle chemo is very doable and take all the help that is offered. I found that once treatment started I felt more in control of things but waiting for it to start and waiting for results is very hard.

Has anyone taken a good hard look at their lives as a result of their diagnosis and did any of you alter things as a result? I'm considering some pretty major changes and although I feel its the right thing to do a tiny bit of me is wondering if it's all the drugs and the after effects of the surgery that's making me feel like this or whether I'm feeling that I'm getting to the point where its now or never!!

rovercat I'm in that place at the moment, work is slightly forcing my hand, but I'm really thinking about what I want to do going forward. I'd already decided I would take a 3 month unpaid leave break once I'm "better" and then they opened a VR register. I work in corporate finance and it's an all (110%) or nothing job and I'm wondering if the stress is worth it. I had a different kind of health crisis 4 years ago with acute bacterial pneumonia (and my only female colleague at the same level as me had a heart attack at 51 last year). I'm a bit frightened of not working there though. I joined at 18, love my job (honestly!) but it is a huge responsibility, and yes, deals go wrong, and yes, it keeps me awake some many nights. But a payoff after 28 years service....
Though, cancer has given me literally an overnight recalibration of my "do I give a shit- ometer" so I wonder if I'd worry less going forward and shrug.

Morning everyone
Lily I hope the scans come back ok, waiting for results is horrid

Talking of work I went back after treatment but the school I worked at had really gone downhill while I was off and there was lots of stress. In the end I decided I didn't want to be stressed and upset about work all of the time so left. I now do supply teaching, when I want,leave it all behind at the end of the day and it's going well. I do think that cancer makes you look at your life and reevaluate a bit.

rust thinking of you today and really hope you are ok, you're in the best hands.
mumof2 I guess I'm thinking less stress would be better for me. Clearly life is too short to be stressed if you don't have to be.
fresta how are you today? recovering well I hope, I think having the drain out was the most unpleasant sensation so far, urgh!
rover and lily best wishes for results tomorrow - my brother had an ear infection recently where the only symptom was vertigo - he had to take travel sickness pills to settle it till it his ear fixed itself. He's 6'5" so a long way up to start with , hope yours is as simple and the scan's just a necessary evil.
mysilly I hope your chemo SEs have been mild this week.
Hello to everyone else!
I feel quite normal today, phew! Have a phone interview with Occupational Health at lunchtime but may go out for a short walk afterwards.

Morning everyone. I'm feeling ok and recovering well, thanks for asking Pepper. My arm feels strange and hurts when I stretch it with pain down the underside, but I guess that will get better slowly and take quite a long time. I can move my shoulder fairly well and the wounds themselves are not too bad, they are healing really well. Of all the treatments I have had over the last 7/8 months including numerous canulas, chemo, biopsies, wires and clips in and the surgery itself etc, having the drain pulled caused the most pain.

rover, I think cancer does force you to re-evaluate your life. It's made me realize that so far I haven't done very much with my life, before cancer I felt I had all the time in the world to travel, spend time with family and friends etc. But cancer makes you realize that you might not have that chance in the future, so I intend to try and seize the day a bit more. On the other hand though I can't wait to just get back to normal routines like work etc.

I have certainly re-evaluated my life since cancer. As I have secondary cancer, my prognosis is not so good. However, I kept working, partly for mental stimulation and partly because I wasn't prepared to have to give up my job to illness (sheer bloody mindedness on my part). But my job isn't stressful or physically tiring, though the four hour daily commute can be. Also, it is such a niche job that it would be impossible to ever find another one similar.

As I am older than most of you (contemporary of Victoria Wood - bloody cancer yet again!), with grown up children and enough money to live comfortably, I have decided that this is the time to treat myself. As a result DH and I go out to theatre/cinema/concerts far more than in the past, go out for nice meals (nausea permitting) and aren't worried about booking holidays to wherever we fancy going. It took us a long time to realise that we were no longer constrained by our DCs needs (both for time and money).

Afternoon everyone, hope any scans, tests or checkups have given good results and that everyone else is having as normal a Thursday as possible! Was hoping for a fairly normal day today (or as normal as possible can be at the moment) but DH broke a tooth so an emergency trip to the dentist was in order, all sorted out now and we're back at home. Still working my way through the various changes that seem to be all happening at the same time in both work and personal life. Definately looking to take a big step back from my work, as being awake in the wee small hours worrying about things and spending any time away from the office trying not to get dragged into office politics and who said what to who is just something I no longer want to be part of. Children are grown up and have left home so I have the chance to do things that I want to do, trouble is I'm not sure quite what I want to do. Would love to travel a bit but at the moment the thought of packing up to go away makes me feel exhausted so I think I may start small with a weekend away once the weather is a bit warmer and work up to a bigger trip. Anyone else with any good plans for the future?

Hello all. On the topic of life changes. When i was diagnosed i decided to take time off from my university teaching job. Initially I had considered one semester, but ended up taking the whole year off! I was able to do that because of the nature of my contract. Although i am not used to being jobless and despite feeling bored in the mornings, i do not regret the decision. I get stressed easily and so eliminating one major source of such stress was crucial to my well being. However i am supposed to return in september, something i both look forward to and am nervous about. I worry i am not the same person anymore and that teaching and assignments and exams will burden me alongside being a mother of two. My oncologist has scheduled to see me for my first post treatment check up mid july and i am already anxious. Those who recall my first posts here may remember that we had to cancel a trip to The Bavarian Alps because of my diagnosis. Well, they never returned our money but said we could carry the trip over to July2016. I am terrified that the check up will show something suspicious and that once again our plans will be ruined . My DSs would be devastated! On the other hand if the check up is ok, it will be great to go off and have that holiday. I am so scared of planning anything now and keep telling DH not to talk about summer holidays in front of the DS because of what may happen.

There are so many things I'd like to change. Mostly though I want to
change myself - to take life more lightly, be less rule-bound, enjoy things more. Unfortunately the diagnosis hasn't turned me into a different person!

Fingers crossed for Germany, royal, and I hope you can book a weekend in the sunshine soon, rover.

Morning everyone, I think the pain down my arm might be due to 'cording'. I was just doing my stretches and they seem to be getting harder to do and I noticed the cords are visible in my armpit when I try to raise my arm. Anyone had experience of this? And what did you do about it? Please tell me it goes away! I have googled and found some info but there doesn't seem to be much advice really.

I've "only" had chemo, but I have not yet had to cancel a holiday due to treatment. My Oncologist did raise his eyebrows when I said I was thinking of going to Borneo (in the end we went to Lake Garda) but he says that he will schedule my continuing treatment around my holidays ... and he makes sure I am topped up with blood etc. before I go.

So, unless you are booked in for surgery, or are mid rads, or you are feeling terrible you should expect to go on your holidays!
BTW Bavarian Alps are lovely - have stayed in Mittenwald and Berchtesgaden.

If you need to buy annual travel insurance, just covering Europe, Eurotunnel insurance is cheapish and doesn't require you to answer vast numbers of questions.

Hello all, thanks lily for the health insurance recommendation. Will definetly look into that. Ys, anything to do wth the Alps should be super. we went to the swiss Alps the year before last and fell in love and had decided to see more of the german side( black forest was divine) I just want some quiet, scenic get away where my biys can be boys and i can forget about cancer if possible!
Fresta, i had a similar scare and it did fo away.. Keep strecthing and gently massage the arm in the shower. I doubt it is chording( i too was panicking a the time thinking it was!) it is the netves getting themselves sorted. If it persists check withyour onc, but I am sure like me yours will resolve itself on its own.
Have a good day all.

Lily, I just want to wish you well for today, particularly re the vertigo. Hope it's just something simple.

Royal, how is your skin doing, I hope you're healing? Your holiday sounds great so fingers crossed for the all clear. Have you started the tamoxifen yet? I really do think the doctors try very hard to work around holidays, mine managed to squeeze my rads sessions in before our summer holiday two years ago. At one point they were prepared for me to fly on the same day as the last session but we managed to avoid that.

In terms of reevaluating, DH and I are making a bit more time to have the odd night away. Our daughters are at university and we have more freedom. We've got several things planned, not expensive but lovely to look forward to. We could have the opportunity later this year to move or pay off our mortgage. After a lot of thought I think the latter is winning, I'm favouring freedom and less worry over a bigger house and we live in a lovely place anyway. It's time DH had the opportunity to slow down a bit too and enjoy life a bit more.

To everyone else, best wishes as ever. Fresta, I think I had a bit of cording but under my breast, I could see what looked like a tight string under the skin. I just kept stretching and rubbing it and it went away.

Fresta I found it terribly difficult to move my arm after my ANC. I could only raise it 45 degrees for weeks after surgery and I did appear to have some cording. Tbh I think I still do 3 months on. However I do have good mobility and no lymphodema so far. I was referred by my BCN for physio at the hospital but booked a private physio because it was quicker. She marked on her wall how far I could reach up, and the improvement after 4 weeks was amazing. I still feel my operated arm is much weaker and it is hard putting away crockery in high cupboards but I do make an effort to use it. So keep doing the exercises and contact your BCN if you think you would benefit from physio. From what I have read most cording goes away on its own after time either with or without physio.

My head appears to be much clearer on pax and I have had almost no side effects. Did other people have a cotton wool head on FEC? I was away with the fairies for most of the time. I feel more like me now, and I did my dog walk far more quickly and with less breathlessness.

Thanks for the advice everyone. I spoke to the nurse and she said it does sound like I might be developing cording, but said keep doing the exercises 3 times a day and to take paracetamol half an hour before doing them so I can push a little further. I will ignore that though as I am enjoying being drug free for a change. I hate taking painkillers as they always have unpleasant side effects.

mysilly, I found it the other way round. I had fuzzy head permanently on tax but not so much with FEC.

mysilly yes I had the fuzzy head on fec and felt like I couldn't think properly! Like fresta I'm enjoying a bit of drug free time at the moment it seems strange to feel almost normal!!

Hi all. I ended up having a mastectomy and axillary mode clearance and am recovering at home. Not feeling to bad but pretty emotional. My little girl has gone to stay with my mum over the weekend and I cry every time I speak to her on the phone 😢. I'm now dreading the pathology results. How do you cope with all of this?? I feel like an emotional wreck x

Oh rust, glad you're home and have got the surgery done with, completely understandable to be emotional .
The wait is the worst bit, one day at a time, try to distract yourself, maybe do some baby planning? Once DD is home she'll distract you. DH had to take over bedtime story reading for a while here - I cried everytime I read to DD which meant we were all upset at bedtime. Take the weekend to cry, your DD is in good hands.

Good morning all. Rust, your emotional reaction is perfectly normal, hope you recover swiftly. Rest and take care.
Mrs, hanks for the mention. I intend to start Tamoxifen today( delayed cause of a family dinner as was not sure about SEs)
My skin is healing very well. I am however struggling with fatigue and weight gain. I suppose i have to do something about both, but not sure what:(
Have a good day all.

Rust of course you are feeling emotional. But chances are that the mx and node clearance have removed most of the cancer from your body. Next step will probably be chemo to remove any rogue cells and possibly rads afterwards. Treatment will take 6-9 months typically.
Your results appointment will inform you of the size and grade of your cancer and how many nodes are affected. You will find out if your cancer is hormone receptive or her2+ and this will inform your team of which chemo to use and if you need herceptin or tamoxifen.

This is a big deal for all of us, but you are pregnant so your emotions are messed up anyway. Things you can do now include getting helpers organised for when the baby is born. Are your parents nearby? Be aware that lots of people with cancer need ad's and that's not a weakness, so if you need help with depression then see your GP.

Rust I don't know how we cope but we just have to I suppose. Ignore all of the rubbish about people with cancer being brave and fighting though,we're all just terrified and muddling through. It does get easier as time goes on though and it will for you too

Scan results on Friday. The good news is that the head scan was clear, the not so good news was that I now have lesions on my liver as well as my bones. All rather disheartening. Consultant has urged me to retire from work, so I think the time has come for that at last. Hoping that the Paclitaxel will work as there aren't too many options left.

So sorry lilymaid. I don't know what to say that can make you feel better, but i am sure your doctor will do what he can to control this damn cancer. If retiring means focusing on yourself and eliminating any stress and just looking after YOU, then it could very well be the time to stop yes. Wishing you the best.