**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.

Hello All, firstly thanks for the commiserations and advice about the lymphodema. I made sure the sleeve wasn't over lapping with the glove on my fingers which has helped with little finger but can't do anything about my thumb which was a bit uncomfortable yesterday but I did manage to keep it on until late. It is a bit Of a palaver to get on, in fact haven't quite mustered the energy yet this morning to wrestle with it. In answer to the question about driving, not an issue, although am more aware of the sleeve when changing gear, does slow my typing down and I am a crafter, so will be interesting to see if it impacts knitting etc.
Secondly, another welcome to baw. I will look out for your thread as don't want you to have to repeat yourself on here, but seems shocking that anyone with a cancer diagnosis should have the waiting and lack of reassurance that you are getting. In general my experience with the NHS has been pretty positive throughout my diagnosis and treatment, and so I am doubly disappointed for you. I never invited my husband to any of my appointments, my mother was also upset that I didn't involve her but I didn't want to have to worry about anybody else's feelings, and wanted to be able to relay any information edited as I felt fit. I mostly attended alone but did take my sister, who is very sensible, to a couple of the early appointments. She was armed with a list of questions she knew I wanted to ask and her job was to make sure I did and also to make notes on any information, although to be fair, the BCN also did this and I was given a copy of notes after every appointment. Please keep us updated.
Hope everyone is managing to enjoy the weekend, hope you are sleeping better minty I had the same problem with not sleeping well on my back - this too will pass! Great to hear that the chemo has done its job.

Baw I remember well the feeling of claustrophobia around other people back in the early days of diagnosis. Although I had been pretty much given a diagnosis of cancer at my very first visit to the hospital thanks to a prize plonker of a locum consultant, I got the biopsy results and official diagnosis the day I flew to Ireland for a family (DH's family) wedding. As hard as it was, we thought it best to tell everyone face to face and that was so draining having to deal with their tears and well meaning words and hugs.

MIL could barely leave my side all weekend, especially at the wedding and I just wanted to scream at her to leave me alone. But I couldn't have got through the last few months without her. She calmed down completely once we knew the treatment plan and she and FIL have had DD (7) for sleepovers when I've had my chemo and taken her to and from school. She's dropped round dinners that just need heating up and done our ironing for us every week. She's been a huge support.

I've done most of my hospital visits on my own but DH has come to the ones with the surgeon and first oncologist appt. he's the complete opposite to me, doesn't internalise things much and wouldn't ask many questions. I on the other hand think way too much and always want to find out more. When he's been with me it's hampered me a bit and I do think in general it's affected the whole way I'm dealing with this (eg he's not that interested in seeing my arm that has been wrecked by chemo so I've learned not to talk about it etc). I am going to make sure I have an appt on my own at the end of treatment when I can ask all my questions so that I can begin to understand what it is I have been and still am dealing with.

As to this latest round, I'm doing ok. Still not sleeping well but not taking painkillers which is good. I only generally have a problem when moving due to gravity and natural bounce! I seem to have wierdly reacted to the steri-strips they put on to cover the small incision for the guide wire and have come out in huge angry sore blisters. The strips they used during surgery (that look identical) don't seem to have bothered me at all.

Buns, don't envy you trying to pull on the sleeve, getting on the socks for surgery was bad enough. Hope it doesn't get in the way of your crafting too much

You're all very brave and thank you for your reassurances. Hearing how you've had the same feelings as me has helped a lot. I hope you've all had good weekends.

Baw, welcome from me too. Blimey, what an experience for you so far! Fortunately, you've arrived at the point where the teams are getting very good at treating liver stuff. Very glad that you now have the specialised team, so they can work out whether they are doing surgery, zapping with radiotherapy, freezing it with freezy stuff, cooking it to death with microwaves, hiding chemo inside proteins that can sneak in and kill it that way, or a nifty combo of some of those. They are seeing 80% success rates on this stuff now, if that's any consolation.

I'm another who prefers not to take DH, as he panics quietly and it's not helpful.

Thanks amber, there seem to be a lot of us with partners who are panickers! Not that I'm criticising, I have no idea what I'd be like if it was the other way around. It's one of those situations that you can't predict I suppose.

I really hope they can sort me out, obviously! The problem with the cancer that I have, is that it's so rare that there's no protocol in place for treatment. Plus there seems to be no rhyme or reason as to why something works for one person and not another. It's also likely to be elsewhere in my body and even if they were to approve a liver transplant, there have been cases of it growing back in a transplanted liver. On a cheerier note, it can be slow growing, so I'm keeping everything crossed.

Fingers crossed for you here too BAW.

So sorry you have had to join this thread.

Hello everyone and hello baw, I am sorry you find yourself here and in such stressful circumstances, but welcome, this is a great place to be while going through this journey. I haven't seen your other thread but it sounds like you are having a really difficult time so I hope you can see someone soon who can give you some proper answers. My DH was very practical and good at note taking in my appointments, though he also has a knack for asking questions I don't want to hear so I had to tell him to shut up a bit (eg: to please never ask 'what is the prognosis?') so I can completely understand wanting to go in alone.

Minty, I am so glad to hear you are back home and doing OK.

I have just caught up with all the reconstruction chat up thread which was very interesting, I now have a lot of extra questions for my surgeon when I finally see her again in June.

So tomorrow is my FINAL chemo treatment, hooray! It feels like a different lifetime from when I first came on here in July, I can barely believe how much has happened. Finishing chemo feels like a big milestone, any suggestions on a good way to mark it?!? I would also like some advice about hair regrowth as mine is coming back but so patchy and horrible, my friend said the other day that I look like a duckling! This is not the look I am aiming for! Similarly eyebrows (nearly all gone) and eyelashes (thinning) - or is it just a case of wait and hope?

Waving to everyone else, hope the year has started well.

Elporto what about a new handbag as a present to yourself for getting through chemo?
And a nice meal out, of course (depending on how soon you get tastebuds back into reasonable working order)

Hi elporto, wow I can't believe you've nearly finished chemo. As you say, it seems like a different lifetime yet only yesterday too. Well done on getting through it. Do you need anything else or is that it now?

I was fortunate enough to get some medical insurance money through, because I had nhs treatment instead of using the private insurance. We discussed what to do with it, family holiday etc, but DH insisted I bought something for myself so I now have my 'cancer watch'. Have you any thoughts yourself, do you think you'd like a thing or an experience to mark the occasion?

Hello to baw. I haven't seen your other thread but it sounds like you've had to fight to get where you are. That's deplorable and no one should have to fight for diagnosis and treatment. I hope you're on the right path now.

Minty, hope the gravity and natural bounce aren't causing too much discomfort!

Cleanas, how are you doing?

Hi to everyone else with their returns to work, swollen arms, family meals etc.

Yay elporto last chemo that's great as for hair I had my last chemo at the beginning of November and had enough hair to stop wearing my wig at the end of Jan, gosh that's almost a year ago how time flies ! It's bob length now though still trying to grow the top layers down
Hope you get few side effects this round

Elporto, fantastic news you're at the brink of the end of chemo :). Do a figurative punch in the air for me as well as you walk out the hospital as I never got to do one with my chemo being cut short! Really hope the SE aren't too bad for this last one.

Yep July seems a whole world away now. Although there has been a lot of waiting along the way for both us, time just seems to have passed by in a blur. I am a different person already and still have rads to go. I definitely feel treatment has put 10 years on me which I'm not happy about but thats a subject for another time.

My hair is growing back fairly evenly but I have a more slowly growing band across the front. It's not a thick covering so there's no way I could respectably go scarfless for quite a while yet (malt I'm very impressed with your hair!). But my eyebrows! I had not a single hair left before Christmas but they are growing back so fast - from the inside out wards. I'd lost all my eyelashes too but the bottom ones are also making an appearance again. Such a relief to see some signs of normality again.

Great to hear people finishing their chemo and in good spirits. I hope you've all had good results from it.

Ooh handbags and watches! Who knew that having chemo could be such a good shopping opportunity DH and I are actually going on a rare 2 night break to Bruges at the end of the month without the DC which I think will be a good way to celebrate the end of this particularly trying bit of treatment. But I will definitely think about getting myself a gift as well, any excuse eh!

Also (now don't all laugh at once) I am wondering about getting a small tattoo on my bald head. Something that no one can see when my hair comes back but which I know is there. And if I ever (please God no) have to go through this again, I'll have a reminder that I've got through it once and survived. Now, is this totally crazy?

Malt, I am very impressed with how quickly your hair came back, this gives me hope. For now, I would settle for some eyebrows!

Hi, firstly, I wish everyone on this thread best wishes and ever so much more, further, I appreciate this isn't the right thread to join but I'm hoping someone may point me in the right direction. My mom has just been diagnosed with stage 3/4 cervical cancer. I'd really welcome anyone pointing me in right direction where I can ask questions/find out more. Much love x

Hi, I'm afraid I know nothing about this type of cancer but there are pages on the Macmillan website and a forum dedicated to the subject.

Diagnosis is a hard time for the family as well as the 'patient to be' so be kind to yourself and stick to reading info from reputable sources. We all find out the hard way that random acts of googling are not the best idea!

I'm sure someone with more experience will be along soon to help.

Hi myrtle and sorry you find yourself here. When I was first diagnosed, my mum found it very helpful to speak to the Macmillan helpline. I wasn't always in a position to tell her all the information I was getting from my consultant and nurse (exhausted, emotional) but if I gave her the bare bones of the diagnosis and treatment options she could call the helpline and talk it through with them so she could understand it all more fully. Are you or someone else going with her to her appointments? I found it very helpful to have someone there to take notes as I couldn't always remember what was said and that might be a way for you to understand what is happening, but only if she wants you there of course.

This is the truly horribly scary bit of the process, once you have a plan in place things will start to seem more manageable. Love and to you and your family.

Hello all, sorry I haven't responded to questions, its all been a whirlwind of hospital appts etc. I start chemo today, am having FEC-T with herceptin . Drs quite concerned about the rate of growth of the tumour I can see/feel. Its tripled in size in the last 6 weeks, so god knows what the other 4 are doing! Feeling lumpy and sore under my arm, so that doesn't bode well either :/. My CT scan is on 6th Feb but onc wants to bring that forward as there are real concerns that it has spread......I'm nervous about today, although pleased I'm finally starting treatment. I'm a bit rubbish on forums and apologise in advance for going awol!

Myrtle, I'm sorry I can't help but saveme and Elporto have given some good advice so I hope you can get help from Macmillan.

Shrew, best of luck with your chemo. I had 4xEC (so no 'F' whatever that is) and then should have had 4x taxol (the 'T') but was cut back to only 2 due to the side effects.

I only had the one tumour which was her2+ and it had literally popped up over night. You could actually see it, particularly when I was lying down and it made a huge dent in my breast. Although the original mammogram measured it at 3x3 cm or so, by the time chemo started 5 weeks later, the oncologist was physically measuring it at 6x4 cm. I could also tell that it had grown bigger and denser.

Now I know that everyone is completely different and I don't have your cancer or necessarily reacted to treatment the way you will but just wanted to say that I had a WLE and SNB last week and have come back from seeing the surgeon this morning having been told that the chemo had worked so well there were no cancer cells left just 2 small areas of DCIS (about 8mm in total). I am lucky that they had been confident from the start that it hadn't got to the lymph nodes and the biopsy confirmed that.

I assume you will be given regular ultrasounds to check the status of the tumour(s)? I had one after every 2 cycles. Keep bearing in mind that if chemo is shrinking the tumour then it will be having the same effect on any other cancer cells that may have escaped.

Good luck with the chemo and remember to ask for anything you can to help you with the SE.

Elporto, I'm not laughing at you :-). Everyone on here is having a battle but when I think back to your posts last summer and how hard if was for you and how strong you seem now, you really have come through as such a strong trooper. I think if you want to mark that then go for it. I wouldn't only because I would be too scared of the pain!

So, I've now done chemo and surgery and am 'cancer free' (well you know what I mean). The surgeon couldn't get over my allergic skin reaction though, having never seen anything like it before. She wants to get it photographed so she can research it properly and then use it for teaching purposes. So I may end up on the good old internet one day!

There was also some debate within the team as to whether the marker had actually been removed during surgery so I'm to have a mammo in 6 months time as a precaution and if it's still there then it will need to come out.

But that's it for now :). I'm being referred on to radiotherapy but obviously won't start treatment until I'm fully recovered.

Waves to everyone and hope you're all enjoying blue skies - or snow!

shrew hope your first chemo goes ok. I remember my first one and sitting there afterwards waiting for side effects.

minty glad a lot of treatment is over .... Just Rads to go.

Elporto, when I think back to the three tiny tattoos I had last summer for radiotherapy, there is no way I could contemplate a scalp tatoo. It was too painful ( but lasted seconds for those still to do it and i think i had a student). But if you are truly crazy go ahead, no pun intended. What would you have?

Minty, what marvellous news, I'm so pleased for you. The rads will be a walk in the park. It's lovely to hear positive results. Hope you're taking it easy!

Shrew, hello. Pop in and out when you like, rarely a day goes by without some chatter so there will always be someone around. Take care.

Myrtle, sorry about your mum but I hope you manage to find some help and information. I agree with the advice about googling, you could really scare yourself. Stick to the main charity sites and even then remember they are probably not up to date and everyone is different.

Hi myrtle good luck with finding answers to your specific queries but do feel free to come on here and rant if you need to.
shrew hope the chemo went okay. I had the equivalent to FEC-T although no herceptin. It's no walk in the park but is so doable. For me the SEs didn't kick in until the night of day 2. I wasted 2 days waiting to feel bad the first cycle but learnt to get on with things after that. I also learnt to proactively manage constipation which was one of the worst things with cycle 1.
Woohoo elporto good luck with the last chemo. You are probably feeling a bit pants for the next couple of days but then you wil be in the upward trajectory to wellness. I actually quite like the idea of a head tattoo, although agree it would be painful. I don't think I celebrated my ending of chemo and it did take a few days to sink in, like minty mine was cut slightly short, but when it did sink in it was a great feeling. My last chemo was end of September and I already have quite a good covering of hair - unfortunately it is my natural grey but I have seen my hairdresser who is happy to dye it next week. Although not the style I would have chosen, I do look like I have deliberately short hair rather than a cancer patient so happy to go bare headed. I never lost my eyebrows, they thinned, but still haven't regrowth and my eyelashes seem to be stuck at a pathetic, stubby length so am still using falsies. In other areas I have a goatee, where no-one would expect!
minty for me, the rads were a complete walk in the park compared to everything else, although be warned that you do carry on cooking for a couple of weeks after they have finished.

Myrtle you are very welcome,stick around if it helps to talk. I'm sorry about your mum

Minty you will be fine with rads, the travelling and waiting around is the worst but the actual treatment is fine

Shrew hope your first chemo has gone ok, do tel us about any side effects and we will try to help. I had fec t too and whilst it was awful if wasn't as bad as I expected so hopefully it will be the same for you

People who's hair is just growing back mine came back grey and curly but now is back to blonde ( ok from a bottle ) and straight again.

Hi Everyone...quick questions
Has anyone had cancer in their lymph nodes and NOT had to have chemo ?
How long after surgery does chemo start ?

( Still not heard from the oncologist )

Clean I think you do normally need chemo if it's in your nodes, sorry. I had 6 weeks between my op and chemo starting but my hospital was quite slow to get around to things ! You could always ring and chase them up the waiting is horrid

Morning cleanas, yes, if it's in the lymph nodes you will need chemo. During my MX they cleared 13 lymph nodes of which 12 had cancerous cells and this was the main concern of the onc when she was planning my chemo. It also means I will be having rads to my shoulder / neck area in case any have spread there. I would phone the hospital or your breast care nurse if you have a good one and chase the appointment, I waited about 6 weeks between surgery and chemo which is a totally normal length of time to wait but I found it quite hard not to be getting on with it. Good luck. I hope you get some news asap