Tamoxigang cancer support thread 54: A new thread for a new year!

[WhatWouldLeslieKnopeDo]

Welcome one and all to the wonderful Tamoxigang thread! May 2016 bring us all health and happiness

If you are new here, then an extra big welcome to the club nobody wants to join. The thread is for people with any type of cancer, and also those who are waiting for results. So don't be shy. We are more than happy to hold your hand while you are waiting for a diagnosis, and we will be here to celebrate or commiserate, whatever your news

No question is too big or too small, someone will usually have an answer, or an idea of where you might find one. You can laugh, cry, shout, swear, and, of course, eat chocolate it is a bit of a safe haven from the mad world of cancer, the head-tilting and talk of bravery, and all the nonsense that comes with this diagnosis :)

So feel free to introduce yourself. And oldies, feel free to re-introduce yourself if you'd like.

We only have one rule here and that is no Googling!

fresta i have yet to find iut hiw many sessions i will need. I am to expectanythingfrom 6 to 8 weeks :( which is really a lot and I suspect includes those boosters mum mentioned .
I think besides the possible side effects, it is the fact it is every day that will be a challenge. It will mean little rest, as I have to collect DC from school every day as well. This new pace should be interesting.
For those who had to have Tamoxifen as well, did you have it simultaneously with the rads or afterwards? I have been told it does not differ much in efficacy, and is up to the patient, as some prefer to deal with the side effects of each on its own.

I found this:
ro-journal.biomedcentral.com/articles/10.1186/1748-717X-7-121

I feel a bit pathetic for struggling with FEC. Hey ho, at least it's the ultimate nit treatment. However many infestations of the wretched beasts DD gets, I need have no fear. Ha! Don't think Boots'll be stocking epirubicin next to the Hedrin though...

6-8 weeks of rads is long, Royal. I hope you can find some small daily treat to help you through. Or a calendar with a big fat marker pen to swipe through each one? (Sorry, my coping strategies are all a bit infantile!)

My silly, hope the pain's easing a bit. Will you be able to come home today?

Wishing cosy weekends to all, simultaneous frost and daffodils is a bit confusing...

Dinster don't feel pathetic it is brutal but you will get through it. Is it just the hair loss you're struggling with or is there anything else we can help with ?
I started tamoxifen after rads and don't get any side effects from it

dinster there is a absolutely nothing pathetic about your experience. Chemo is far from being like any other medicinve we have ever had to take in our lives! What are the worse side effects for you? Maybe we can share our own coping mechanisms with you.
As for my rads, I hope they do not go so long as it wikk surely be tough, but I tend to do the ticking off what is done and counting away thingy:) it helped with the chemo and I hope to carry on with it!

Thanks do much Mumto2 and Royal. It isn't the hair loss at all - that's the bit I can make light of. It's the constant nausea and fatigue and most of all the psychological bit. I just feel like it's stripping me of myself if that makes sense. I can't concentrate, can't cheer up, am no fun to be with - I don't know who I am any more and can't see how that's going to change. I'd half hoped the diagnosis might help me take stock and change my life, enjoy the moment more and so on but not at all. So sorry...

Oh dear now I feel rotten for not being stoical and cheery and grateful for the good treatment. I am really! Sorry tamoxigangers.

Don't be sorry we all understand ! There's a lot of rubbish in the media about people with cancer fighting and being positive, it puts pressure on us to be like that when we can't always be. I am grateful for each day but I'm also pissed off that I got cancer in the first place and very jealous of people who haven't.

I'm sure you've tried things like ginger, eating little and often and sucking sweets to take away the metallic taste in the mouth you get

Should get up, feel a bit rough this morning though mine is wine related so my own fault

Dinster, don't feel bad about how you are reacting to all this. I was spared the horrors of chemo but still felt very down about surgery, rads and tamoxifen. Also the fear of what the future may bring. Having cancer doesn't turn you into a new braver person. We are still ourselves but facing a shocking time.

Like mum2 I am angry that this has happened to me and I don't know why it did. I have always done everything in moderation, I have friends who in theory have more risk factors than me who are fine. Not that I would wish this on them of course, it's just natural to think why me?

I also think I'm more grumpy than before which I'm really trying to work on, but I have moved on. It's no longer my first waking thought and I can go for hours without thinking about it.

Royal, I had started tamoxifen by the time I had rads. I remember doing a bit of research and opinions seemed mixed as is so often the case. However, I don't think it made the rads experience any worse for me. I've tolerated it very well but I know others have struggled with it. I also take aspirin everyday with the support of my oncologist, the theory being that it reduces inflammation making it more difficult for cancer to take hold again.

Now a question from me. I've been suffering from a painful shoulder for a couple of months. I think I had a trapped nerve in my neck which has now settled in my shoulder. I feel I need some massage but have a little feeling that massage is not allowed. Does anyone know anything about massage after cancer? I suppose I should see my GP but that will take a while. It's on the other side to the cancer.

Mum2, I was doing dry January but got cracked on Thursday night. Hope you feel better soon!

Donated the effect of chemo on the brain especially EC is very pronounced. Your chemo fog is just as valid a side effect as the nausea. It is hard to get through the days when your mind is suffering. It is not a failing, don't feel guilty or ashamed. You will get your "self" back. It is just going to take some time.

I am trying to get dd treated with the chicken pox vaccine so I don't have to deal with that as well as faslodex. The clinic nurse said she had never heard of it. That can't be true can it? Surely if your job involves giving vaccination shots you would have heard of chicken pox which is a standard vaccination in the USA and Australia. It is recommended by nice so I hope they are not going to be difficult about it.

Donated = dinster sorry autocorrected

Thank you so much everyone for making me feel I'm not failing by being down. Being 'allowed' to say so here and being with people who actually know what it's like makes such a difference. You are all brilliant.

Perversely, I'd never been 'healthier' in terms of diet and fitness than in the year pre-lump. Bah humbug. Fed up of x,y,z-causes-cancer news stories now.

My idea of a 'dry' January is drinking gin with an attempt at a wry witticism, mrsrhod!

dinster i can relate to what you said about not knowing who you are anymore. Cancer is not just a disease that hits the body, it turns our lives upside down. I try to be positive because I want to get better for my kids, but there have been many many days and nights when I felt like I was being whizzed away on some crazy trip to nowhere. As sleepy said, chemo does affect the mind and mood, so we are in effect not ourselves during this time. You WILL get through this. Chemo WILL end. It seemed it never would but I am now done with it. So will you.
mrs interesting about the aspirin. I think I may ask my oncologist about that. As for taking Tamoxifen while doing the rads, I am not really decided about that. I know many people do well with Tamoxifen, but I can not tell if I will or won't and whether or not I want to be dealing with that and the rads is something!
You know what is equally angering? All these famous people dying from cancer these days! It has not affected me directly, but at the back of my mind it is nagging me. The term "died after a long battle with cancer" has been all over the news the past week and days. Makes you really realise how much is at stake and very angry. Anger is not wrong unless it consumes us. We have the right to be angry as we never chose this and as mrs said many of us thought we were doing well lifestyle wise etc.. Almost feels like being cheated.
Sorry if I have not really helped!
Wishing you all the best,

Royal, what he actually said was that there have been studies which have found it useful to protect against bowel cancer and the jury is still out with regards to BC but there have been some promising results so he was very happy for me to take it.

Then he said something strange, which I didn't dare question. He said it would protect me in other ways too, eg heart and would help keep me going for the next 40 years. I'm 51.

I know what you guys mean about cancer disrupting everything about life.

I'm still in hospital despite my INR being perfect. The hospital want two readings within range. The nurse has just taken my blood so fingers crossed for a second good result. I haven't seen my dc for over a week. Dh thought I should have discharged last night against medical advice, but the nurse said that I wouldn't get my pain meds if I did that. I have declined most pain med but I'm taking dihydrocodeine. I'm also on diazepam for muscle spasm but am not getting that to take home. The muscle spasm has reduced greatly since the drains were removed, but I'm still a bit worried about the pain.

I'm following the chemo conversations very carefully. The thought of it terrifies me. Sleepy my children have had chickenpox but if they hadn't I would want them vaccinated. Even if you have good immunity the last thing you want is a sick child to look after. For that reason I would like my child to have the flu jab. It's so hard to get a flu jab for a healthy child. Dh went to the pharmacy and paid £10 but they won't do children. What have other people done with household contacts?

mysillydog i was just like you. I remember coming on here and talking about how anxious I was about chemo, about infections, about my DC and feeling scared. Seems like a long time go now! You will soon find it is over and done. I used to be terrified of them getting ill and me not being able to manage them or myself. I think being around our children is not as risky as we are made to believe, but perhaps some people are more vulnerable than others.

dinster this a tough ordeal, chemo and cancer mess with your mind as well as your body, I think we all feel down at times and it's tough when the life you once had becomes a distant memory. I do think it will get better though, just remember chemo comes to end, keep ticking off the weeks and know that when it is finished you will start to feel more like your ordinary self again. How many more have you got to go? Also, speak to your team about the nausea, they may be able to give you something else to help if you have it constantly.

I'm feeling a bit nauseous, but don't feel like I will actually be sick, have taken 3 types of antisickness though, so goodness knows what it would be like without any. My feet and ankles look like they belong to someone else this morning, couldn't fasten my boots or get my jeans on. Had to settle for leggings. And if i press my finger into it, it doesn'r spring back. it stays indented for ages. The nurse said it was unusual, they hadn't had anyone else suffer from water retention which I find odd as the leaflet they gave me before starting chemo mentioned it as a side effect. Lying with feet in air!

Mysillydog I haven't done anything with dd, except avoid kissing her on the lips if she has has a bit of a sniffle. Your white blood count is only below normal for about a week after each cycle. I did catch a cold after my first one and it took a little bit of extra time to clear it but I was ok. DH and DD have both had a couple of colds over Christmas but I have managed not to catch them somehow. Try not to worry about it too much. I have avoided too much tome in public places for the first week after chemo but have carried on pretty much as usual in the following two weeks and gone out for meals and cinema, shopping, public transport etc.

Hi dinster you're not alone. I am finding that lots of people (both medical and non-medical) tend to have a set idea of how you should be feeling. E.g. well you must be traumatised by the hair loss; you need to talk about the cancer/your feelings; that the way you respond to certain situations must mean that you are in a state of anxiety. I'm a bit up and down and I think it's the really trivial things that sometimes get to me, like usually I do most of the meal planning and cooking because I love doing it, and now I have little appetite and no energy to allow me to do that.

mysillydog I've just had second cycle of chemo so early days but don't be terrified. I'm very much going along the listen to your body lines and finding my limits.

Thanks again so much for all the support and reassurance, everyone. I'm feeling brighter now - largely thanks to you.

sandwich yum well said. I so agree with what you said about others having preconceived notions about how we must be feeling etc. it is like they define and categorise us( sometimes very well intentioned but hardly helpful). I guess it can be hard for those who know so little about the experience except from what they see on telly or read in magazines etc.

Dinster, there's no need to put up with nausea. Tell the team. They can sort out different pills and potions. Try sea bands on your wrists, if you haven't so far; they helped me a bit.
And yes, the 'fighting spirit' stuff about cancer is ridiculous. The only good research we have on it says that 'fighting' cancer with an aggressive attitude leads to slightly worse outcomes.

What we know helps, from proper science, not 'woo', is sleeping in a dark room. Having a good time with those you love, as often as you can. Treating cancer as a blinking minor nuisance (as much as possible, even if it's a more major sort). Eating as healthily as you can and doing a bit of cheerful walking (if you can). Vitamin D. Lactoferrin. Curcumin. Eating an apple a day with the peel still on it.
But fighting spirit and positive attitude to it? Pah. No need for that at all.

Reading over the last posts, 5 days after first chemo. Trying so hard to be positive. So good to hear the understanding! If anyone else says 'keep your chin-up' or 'you're so brave' I just don't know what I'll do!! This thread is a lifeline.
Booked centreparc break for half term so at least have some fun times to look forward to! Hope you are all having a good weekend.

i hate it when people say 'I couldn't cope the way you are, you are doing so well, you're amazing'. There's no choice.