**Tamoxigang thread 51**... no more sangria, but maybe some mulled wine!

[MarthaCostello]

Hello all,

The old thread has nearly run out so I hope no one minds me making a new one. And am I allowed to mention the Big C... Christmas?! our last thread was started in July so I reckon this one might take us into December.

In honour of that, I will lay out some mulled wine, mince pies and I have wrapped myself in tinsel.

A warm welcome to jomidmum, but sorry you've had to join us. No one wants to be in this club, but this thread is a rather nice place to be. Wishing you a speedy recovery from your op, and hoping the pain eases soon.

Massive hugs to beccajoh

A big yippee for Marshy, what utterly fantastic news.

Sitting on the paranoia box for ConsiderablyBiggerBuns, I hope your MRI results are good - when will you hear?

Waving and sending love to everyone else.

I wonder if seeing as we are on a new thread, it might be worth just giving a bit of history for new posters? I will put mine anyway, and then others can if they want to. I am coming up to two years since my bowel cancer diagnosis (grade 2, stage 3c, T2N2M0R0). I had major bowel surgery and six months of chemo.

Gilly, I also had a very similar diagnosis to you last year - and I'm now back to (new) normal.

I had chemo first - my consultant said that as it was in the lymph nodes his suggestion was to get started with the chemo to zap (my words not his!) any cancer that might have got past the lymph nodes. Like Elporto, I had 1 bad week on chemo and then 2 ok ones so depending when you started you could be ok for the Christmas week. (although it was nowhere near elportos scale,I did go away 4 days after my first dose)

I had a bmx, no reconstruction last May and was up and about within a couple of days. I had to be careful not to over do it, but otherwise carried on as normal.

I know it seems ages away for you, but I've been on tamoxifen for 6 months now and although I do get hot flushes, they arent debilitating and I feel I would have had to go though the menopause anyway at some point.

Please feel free to ask any question here, there's unlikely to be anything one of us can't answer!

Great news you're finished Minty, huge relief.

Hope you're feeling better today elporto, I found the priton made me feel lousy too. Hopefully they'll sort the doses better next time.

Hello gilly I'm another one with a similar dx. Stage 3 in one breast, DCIS in other, lymph node involvement. I had a BMX, then chemo and just started radiotherapy this week. I didn't get a choice about the order and was also not given the option of immediate recon - will get that next year. I have had a number of scans with spots found on my liver and lungs but nothing conclusive and have got to wait for more scans next year - gone past the point of worrying about that. As everyone says, it is all doable. The surgery is surprisingly minor, although, if you have a full node clearance, do the exercises, I didn't and am now paying the price. Chemo varies and for me was cumulative, I suspect as a single mum you will find the reserve from somewhere to cope even on off days. My mum had a stroke just after chemo no. 2 and I managed to be chief carer through my other cycles. It does get easier and this time next year you will be looking forward to Christmas without this hanging over you.
minty hurrah for the end of chemo! I hope you are all right about them stopping 2 of the cycles. I know that when they stopped my last tax because of the peripheral neuropathy I felt a bit deflated as if I hadn't lasted the course, that feeling soon passed though.
elporto sorry you had a bad reaction, hopefully, they will manage that going forward.
speedy sorry to hear things haven't gone smoothly for you either.
Finished 3 of 15 of my rads today. No ill effects, just tedious and time consuming when I would rather be doing Christmas prep!

Welcome hug gilly. Its interesting to see the different approaches the doctors take with each of our diagnoses. I had a Grade 3 35mm lump (HER2 and ER Pos), was recommended immediate mastectomy (delayed slightly so we could have our holiday in Ibiza..no ill effects of the delay suggested by the doctors, in fact recommended for Vitamin D and quality time with kids), with delayed reconstruction (due to need for rads later), and chemo following mx.

I suppose we have to trust the doctor's recommendation, and maybe they don't explain the rationale behind what they are recommending as well as they might, but perhaps as each of us is unique, a "one treatment for everyone" approach is not the best, so its good we have different treatments. Just not so easy if you have to make decisions...I'd just rather they said "in my experience, this is the best course of treatment..". Gilly you will get to understand it all soon enough.. unfortunately. There's loads of help and advice here as well as ...and if you feel up to it..x

My DH has just asked for, and been given, January unpaid off work "to look after" me . This may have more to do with the tax bill he has just worked out (and wants to avoid for next year), the chance of a sneaky ski weekend on his own and a backlog of DIY. I appreciate the thought, but am daunted by the idea of him round the house, generally getting in the way...

MyAngels My DH has requested to go down to part time working and has mentioned "caring" for me as part of the reason. Actually, he now receives a pension from a previous job that he can't defer and he wants to do some consultancy work as well as having more time for walking/mountaineering. As I work full time (and do the cooking, washing ... etc.) I'm not sure what planet he is on and he thinks making me a hot drink and dropping me off at the station on his way to work constitutes "caring".

Gilly, is it definitely "stage 3" and not "grade 3"? Or possibly both?
Nothing too worrying from what you've described so far. But the next set of scan results will be the ones the team are looking at carefully, so they know exactly which set of treatments will stop it in its tracks.

Afternoon all,
I haven't posted for a week or two but have been keeping up with news. Welcome to new arrivals. I hope you find this thread as supportive and full of information as I have over the months.
I had my first counselling session this morning and pretty much cried solidly for an hour! I think it's going to be helpful once I can talk without crying so much. I have another appt same time next week so we'll see.
Hugs for all going through tests and treatment.

Well, had a bit of a lol this afternoon when an appt arrived in the post with the consultant in head and neck prosthetics for my stick on nipples. Me and ds were speculating that I might come out with one on each cheek

R4roger I hope you got on OK

Marshy I did exactly the same at my first counselling session and cried for half of the second. It will get easier I promise you. Lol cheek nipples

Welcome Gilly and anyone else I may of missed.

I had another echo last week speedy and hoping for a better result this time. Sorry to hear yours has dropped again

Marshy. Love the idea of cheek nipples! Am sure the counselling will help. I expect they are very used to people crying.

Mummy- fingers crossed for your echo.

Need to go to bed soon so sending a big hug to all.

Thank you MumofTwo.
Not heard yet about appointment, I did have a missed call withheld number which I thought might have been an appointment offer or something. But if and when it comes i will ring and check.

Fingers crossed you hear soon R4.

I'm just coming on to have a quick rant about docetaxol as I have had a rubbish 6 days and no sign of it easing up yet. I definitely had an easier ride of it with FEC and am not enjoying this new round of SEs, my bones are constantly aching and my throat and neck are very stiff and sore. Mainly I am insanely bored and weepy and cross. Anyone got any advice other than to grit my teeth and bloody get on with it? I am taking paracetamol as advised by my onc but it doesn't touch it tbh. Grrr! Rant over, must head to bed.

Er, wine or is that not allowed?

Elporto I had 6 rounds of Tax last year. The only thing that seemed to help me was drinking vast amounts of water (over and above other drinks). I tried to down 3 litres each day. When I didn't drink so much water I always felt worse.
This still seems to work for me with oral chemo so I always carry a water bottle in my bag and make sure I have plenty at work and home.

Elporto I also hated tax and had a much easier time on fec. I'm sure there is something in it which makes you quite depressed too. Wish I could suggest something to help but it will pass and you will feel normal again and be able to do all of the nice things you did before, just do whatever you need to do to get through it and keep ticking the days off

Oh elporto, I'm sorry to hear you're having such a lousy time. I totally understand though as I just felt like I was being crushed in a vice from hips to toe and elbow to finger tips. and the pain in my teeth....

I found paracetamol did absolutely nothing and then tried cocodomol on the teams recommendation which barely took the edge off. I did ask last week what they could prescribe if my 3rd dose was going ahead and was told it would be low dose morphine. so there is something you should be able to have as the pain is too horrendous to put up with for long.

I have barely cried over the fact that I have cancer but I definitely cried a few times due to SEs of chemo.

stay strong, it will get better and there should be time for you to have a reprieve

Been awake most of the night panicing about today. I am completely needle phobic, and that is scaring me far more right now the diagnosis of cancer. I have super sensitive skin too, so even if they try and put numbing stuff on, I can still feel it sharply, not just the pressure!

I also started reading the reconstruction stuff my nurse gave me and had to stop as it just makes me feel so queasy even thinking about it.

Having the biopsys was bad enough, but I had no warning till I got there and didn't have time to get too worked up about it. By the time they did the 4th I was so tense I was ready to leap off the table. The only reason I didn't was they said they may have to do it again next week if they didn't get a good sample this time!

I'm usually a string person, but I can't see that I will cope with all this at all. When I read about the treatments, SE, and what some of you have been through already I don't think I can do this at all.

Oh you've all made me cry again with your words of encouragement! Thank you so much, have had a torrid night, it does feel JUST like my bones are in a vice (thanks minty) and I can barely swallow with my throat. I am drinking literally gallons of water, have a hot water bottle on my achiest bits etc. oh well, I will just hope it passes soon and will ask for some strong painkillers for the next round. Morphine sounds amazing, I may have a tantrum until they give me some.

Gilly, you have a bone scan and CT scan today is that right? Neither of these are painful or difficult in themselves, and though they will put a needle in for the CT scan the staff will be very gentle with you. I found the bone scan quite relaxing in a funny sort of way because it was the one thing where I kept my clothes on. But it's a lot to get through in one day, and we all know that feeling of anxiety all too well. Do you have someone to go with you? What helped me a bit when I was having scans and tests was to just get through each hour at a time. There were days when I couldn't think about the whole day without spiralling into a blind panic, so I only looked at each hour on its own. Somehow this made it more manageable, even if I just said 'between 7-8am I am going to have a nice coffee, shower and breakfast'. Also (stupid maybe) I would always promise myself a lovely cake at the end of it, so even when I was being prodded and pushed around in a hospital gown I would focus on the cake that I was DEFINITELY going to have once it was over. I will be thinking of you and wishing you strength and love. Many of us on this thread are self-confessed wusses but we're here and we're doing it, and you can too, it's not easy but it can be done

PS: saveme, I am TOTALLY going to have the wine, but maybe next week when I don't already feel like I have a hangover

Gilly, good luck today. It sounds corny but we all find our inner strength during treatment (as you have already with your biopsy) and we do get through it.

Yes I have howled many times during chemo and told myself that I can never go through another cycle and just want to give up. But generally side effects don't last for the whole cycle (I really hope you don't prove me wrong Elporto) and once you get a feel for how long they last you can be better prepared for the next dose.

Don't forget as well that everyone is different and some people may suffer much more than others. I've read of some women having chemo in the morning and then going back into work that afternoon and not having any time off until the next hospital visit. Others have hospital stays due to infection, blood transfusions etc but at the moment you can't possibly predict the journey (sorry!) you're going to take.

But whatever path you follow, we are all here for you so rant away when times are bad, rejoice when times are good and generally post whenever you feel you need to.

Good luck again, will be thinking of you

Gilly good luck today, the idea of taking an hour at a time is a good one. I am a wuss, was absolutely terrified by chemo, cancer was something that happened to people I vaguely knew or saw on tv it wasn't on my radar at all. Sadly you get through it because you have to. If I can do it you can too honestly :)

Hello all, I thought the thread had been quiet but then realised it had fallen off my threads I'm on. It's MarthaCostello, I'm trying out a Christmas namechange

Welcome to gilly, sorry you've had to join us. I'm an oldie and don't post often as I had bowel cancer so my experience isn't of much use to anyone else you will get through this. Being practical, you don't really have a choice. Lots of people think they won't cope and they all do. It can be really tough, especially with children (I don't have any) there are some other posters who are single parents too, so they might be able to help with advice. How old is your DS? Do you have anyone who can help with childcare?

But you will get through whatever they throw at you. Even the most horrible things aren't as bad as you think they will be, and the memories quickly fade!

Have you been offered any sedation for your scans? It's probably too late for today's, but if you have any future ones, or other biopsies etc., would sedation help? I thought I might find my MRI difficult as I have had a fear of tunnels so I was given diazepam. I didn't take it in the end and actually rather enjoyed the scan but it was good to know I had the option.

elporto I remember the boredom/restlessness. I had this really weird sensation like my brain was itchy or something are you able to get out at all? Some cycles I only left the house a few times, so I think it was partly cabin fever, when I did get out it did really help. I found having the telly on all the time helped a bit, I was too restless to watch but at least it was a distraction. I spent a lot of time staring out of the window, or sitting in the garden when I was up to it. Anyway I hope that you feel better soon

On the complementary therapy thing... My local chemo unit apparently has someone who does free massages and things. I had my chemo at a different hospital though and never got a chance to try it out. So definitely check with your local hospital, also if you have Macmillan or Maggie's or any other local cancer support centres. Also hospices often have similar services. (And if you fancy it, also check to see if you have a local Look Good, Feel Better workshop for make up advice and some really great freebies.)

I did do the Macmillan HOPE course and one of the leaders was a complementary therapist so she talked a bit about some of the things she did. At the beginning of the course she did a guided meditation and it was so relaxing. She had a very soothing voice. I recommend the course to anyone who has one nearby. It stands for Help Overcoming Problems Effectively I think they just made that up because they wanted to call it HOPE. It's about moving on from cancer. I found most of it irrelevant, but I had joined for the social aspect rather than anything else, as I was rather isolated during treatment. It would probably be much more useful for someone with anxiety or depression. There was some useful information about fatigue and pacing oneself.

Anyway, definitely take advantage of any free therapies offered, as long as your medical team are happy (especially important to check before having any massages or taking any supplements/tinctures etc.). But homeopathy is no more effective than a placebo, which isn't to dismiss its usefulness, the placebo effect is a marvellous thing, but it's probably best not to spend a huge amount of money on it unless you are really keen. Also if you have any side effects do not suffer in silence, or feel that you have to deal with them yourself, there are lots of things that your oncologist can prescribe to help, and lots of options if the first one doesn't work.

Sorry this turned out to be really long. I was only popping in for a quick hello

Anyway, lots of love to everyone, especially those waiting for results or undergoing treatments

Elporto the SE are pants aren't they. I found the extreme aching all the time hard. I phoned my doctor the first cycle and they gave me codeine which did help a bit. I had my dose reduced after first one because of the effects it had on my bowel so the aching did lessen a bit.

Gilly. hope today was not too bad. A step at a time is a good plan. Very easy to become overwhelmed by the process.

Its wineoclocktime with a new name (by computer kept throwing mw out and it took too long to log back in!)

Elporto, hope SE's can be sorted for the next dose.

Hope it was OK today Gilly, I know its daunting reading about all the SE's on here, but don't forget, you wont necessarily get any/all of them. I didn't with the Tax at all, just tiredness.

And has been said before, you WILL be able to do it, there will be tears, tantrums, bad days and swear words, but you WILL get through it.

There will also be good(ish) bits, you'll find out how fantastic some people can be and who your proper friends are in RL and you'll 'meet' some amazing people here too.

Enough profoundness (is that a word?). Hugs to all who need them.