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!

Welcome Sandwich though sorry you've had to join us

Lovely to see some of the oldies posting ( old in treatment terms ! ) when I first came to this thread that was one of the things I most appreciated, people who had cancer but were still here and enjoying life.

Only had one cycle of chemo so far with my second next week. Side effects minimal apart from the fatigue...can hardly do a thing and I'm a fit 30 something with 2 young children. Everything is exhausting!

It is exhausting. Try and accept any help you can, especially with things like housework them you can save your energy to do things with the children

whatwouldrondo I have absolutely no idea how to respond to that. There's a lot I could say that's troubling me about your post but what's the point?

what's troubling you exactly mrsrhodgilbert ? ron's post was perfectly reasonable - I don't understand why you might feel troubled

Yes, I felt that Ron's post was reasonable also.

Sandwich yes, chemo can be exhausting. I was very anaemic throughout and that really added to the exhaustion. (If you're anaemic they'll pick that up in your pre-chemo blood tests.)

As mum says, take all the help you can get :) hopefully the exhaustion will start to ease off in the days up to your last chemo.

How old are your children?

By the way, this is the Look Good, Feel Better website for anyone who is interested :)

Hi Mas (definitely agree with sentiments of your new name) and hi Ron (once I had worked out who you were). Glad to know you are both doing well and it is great to hear from people who have got through cancer and moved on as well as those who are doing well with secondaries.
As someone with secondaries, I have been monitored very closely - I think that the longest I have gone between consultant appointments has been about six weeks. Granted that I have private care at present but I have always been told that private care is much like club class on a flight - slightly better food and wider seats but you get to the same destination at the same time on the NHS/ in the normal seats.
TMI alert - I asked Oncology nurse about constipation. In my case it isn't the chemo but is a SE of the Ondansetron tablets I have to take to prevent sickness for the first two days post chemo. Armed with this information I stocked up with plenty of oranges, Medjool dates and liquorice as further assistance!

My take on this is that it's virtually impossible to know from postings alone who is genuine, who isn't, and who is somewhere in the middle.

I tend to assume genuineness and to ascribe any perceived deviation from this to individual experiences and ways of coping. Denial is a valid coping strategy.

I think it's perfectly OK, and indeed helpful, to say when the experience of one person deviates from what seems to be the norm. The skill is in doing that without calling into question the integrity of the original poster.

Imo there have been times when this hasn't been achieved. ......which must feel a bit crap if you are the person who feels their genuineness is doubted especially if you are in the middle of a crisis.

That's it from me. I'm on hols next week with very little internet so I hope the thread hasn't imploded by the time I return - it's far too valuable for that.

Hi there, posted on previous thread and have been lurking. A good 2016 to everyone.

And advice please. Have just finished my 5 1/2 weeks radio. Yippee. Still feeling v v sick, and need to drink 3 litres a day.

How? I can just about get to 4 pints but not to the 5 3/4 I need. I

Drink tea at breakfast, eleven, tea, late night
Try to drink a pint at lunch, supper if I can face eating,
Try to drink soup if I can't face eating
Wander around with my bottle of water, because the salivary glands have been blasted , and take large mouthfuls quite frequently

But drinking that much increases the nausea. And after a bit, I become rebellious...

Easy tips ( lie under a dripping tap?)

Sorry if closer reading would have meant I didn't need to post this.

Lily- the ondansetron is a definite culprit. I was lucky it wasn't too bad but tried to eat stuff to help! Hopefully it will ease for you.

Leslie- I think I am still in the denial stage about the op . My letter told me the scan showed no abnormalities which is a relief so hopefully this will just be a prophylactic thing. After my last op to put implants in a year ago I am pretty much back to normal physically so not looking forward to being out of action. Am also loving my class this year and don't want to be away from them.
H
Sandwich- as mum says accept all offers of help. It is a very tiring process. Do you have much help?

Anna- I also put on lots of weight but have now lost it again. You just have to eat what you fancy and can manage.

Just wanted to say how much this thread was a lifeline to me in the very beginning and still is a wonderful source of support nearly two years down the road.

Themodernuriahheep I had similar problems with drinking and nausea. My nurse said it was because I am always a bit dehydrated. Now I drink squash instead of plain water some of the time (nurse recommended Dioralyte, but GP said squash would have same effects and taste nicer!). I also eat a salty/carby snack (Ritz crackers are ideal) when nausea strikes. I don't know if your nausea is from the same causes, but it might help a bit. I'm glad your radiotherapy is over, well done for getting through it!

Speedy I can understand that so long after your treatment and finally getting back to normal. How long will you need off work? Denial perfectly understandable

What, that's really helpful. I can't stand dioralyte and t would be the last straw, but I make myself drink squash and can drink it if cold . I've just had some water biscuits and may try the old trick of putting marmite on them . The saltiness should help . Anything with. Milk is disaster but I am drinking mint tea and creating a hot ginger drink.

Thank you and hugs.

Hello hello. Home from fec 4 where the nurse distracted me by busting out some Bollywood moves! Got back to unexpected happy family news so I'm going to try to focus on that, as well as maybe leaning on you lovely lot, if things get dark again. Currently sleepless in the suburbs and trying to keep the nausea at bay.

On subject of nausea and dehydration, my food cupboard now resembles the snack aisle at Sainsburys... I find salty pretzels quite good (avoiding George W choking) and those seaweed sheets and popcorn. Watered down juice with lots of ice is ok but I struggle with drinking enough too - sometimes I borrow DD's twizzly straws to help bypass furry tongue and pretend I'm at a Caribbean beach bar rather than beached on the sofa in my slipper socks.

Speedy, I totally understand the denial. Hope you can get the op done soon and back to fitness and your class ASAP.

Welcome Sandwich. It is such a whirlwind. How much chemo are you due for? Hope energy starts to creep back before the next lot, and if not that you can rest comfortably.

Please forgive this being a bit MeMeMe. I blame the steroids! Wishing everyone gentle weekends. And now for another Twiglet...

Just thought I'd pop on and say hello. It's been almost two years since my diagnosis. I was the 'yesterday they found a tumour in my sacrum and spinal canal' person. Thankfully I'm doing well and am eternally grateful to the wonderful support that literally got me through emotionally - especially in the night, as I was awake in a lot of pain most nights.
I've not been onto this thread for a long, long time. As soon as I was able to drive and 'be mummy', the combo of exhaustion, Physio and doing the things that were expected of me once I could walk, drive and work made it all too much. I felt I was drowning. There was no 'easing back into things'. I then had PTSD the following year. And the last year has very much been 'head in the sand' and dealing with my son who has a disability. We are in crisis with a particular aspect related to that at the moment.
So 'hello' and please excuse my long absence and brief 'popping in'.
I haven't read much of the lovely King and supportive thread - caught sight of the word constipation and remembered my miracle Prune Juice (in a glass bottle from ... TK Maxx). I'd highly recommend it. I remember distinctly how terrified I was that my ability to do a poo (TMI apologies) would 'arrive' before my ability to walk the short distance with my grabby aid (zimmer frame) to the hospital toilet. My legs were strapped to the bed and I had a back drain in, as well as a catheter and IVs - several, from drug-clouded memory. Yup. I remember now why I don't come on here often. I find the whole thing quite horrific to even think about.

Anyway, if anyone does come on here in the state that I was in (shock and fear), having been diagnosed and facing back surgery for a tumour, please do let me know as ... I'm alright (aside from the feint warnings of PTSD and a strong dose of 'head in the sand/ can't look'). I'd love to give comfort and reassurance to anyone going through what I went through and I am aware it's really quite different and unusual (sarcoma size of an orange in my spinal canal and sacrum).

Anyway, thought I'd also mention Reallyworried.
She was on the thread in 2014 and, along with many people on the Back thread and a lot of people on here (one who I worry about often as she was so supportive and very poorly and from whom communication just stopped😢) Reallyworried was lovely. We are still in touch by text regularly and I cannot possibly believe that she is lying about any of her experiences.

The person I wonder about and who was v poorly at same time as me (despite us helping each other in middle of night day after day) was DifficultPickle. I really hope she's ok. I'm scared to ask. Anyone remember her?

Hello all - in case anyone is interested in the work Longo has done around fasting with cancer and were thinking of doing some fasting themselves (either alongside chemo, or on its own as a lifestyle choice to aid recovery post treatment), I am currently at a fasting clinic in Germany and keeping a blog about it over on another thread.

Fasting Diary

I'll probably be having 8 cycles of chemo (3 weekly) and then the consultant mentioned y the possibility of radio therapy after that. I'm glad people on here understand the exhaustion. Most people just don't seem to get that even a phone call knocks me for six, or that I don't want to put "milestones" in place; I deal with each day as it comes.

My children are only 5 and 8 months. I am very lucky to have incredibly supportive family and my mum has moved in to look after the children. Friends have been great so far having children to play and coming over to help.

Hello sandwichYum welcome to the thread. The fatigue is very unlike anything I experienced before that we used to call "tired" or even "exhausted" you are spot on. People who havent been there can not get this and they assume the typical advice for being tired works! I soetimes forget I am not the same person anymore and do a bit more than I should only to find myself totallt knackered and limp later on in the evening. My approach too has tended to be take each day as it comes.if it is a good day then be it, if not then I deal with it to the best if my ability, although with children( i have two) itis easier said than done!
boobz had a look at your diary and it seems really fascinating. I recall you bringing this up earlier on. I would be interested in a regulated fasting detox, but wanted to ask if you are finding any difficulties post op and post chemo? I mean in terms of your general well being? I find going without food now( almost done with chemo) debilitating.

Morning all raining here don't think I want to get out of bed

Sandwich a day at a time is a great way of dealing with it

They do say that fresh pineapple is good on chemo, it was one of the things I could still taste ok too.

Glad we have moved on and that the great support on here is continuing

Morning hope u all have a good weekend.

Sandwich I hope you don't mind me asking and if you don't want to answer I understand. My Gp is doing investigations (never ending blood tests ) on me at the mo cos I feel so awful all the time and lymphoma has been mentioned as a possibility could I ask what your symptoms were and how long it took you to get a diagnosis as I have been back and forward to GP since a mmc at 12 weeks back in Aug, I hope you don't think I am been nosey I am just terrified waiting for results(lots of tears) and sick of not being able to function properly. I have a ds who is 5 and hard work so u must be knackered I just want to get back ro normal ASAP

Please don't feel u have to answer tho I understand x x x

Themodernuriahheep I hope squash helps (make sure it's not sugar free!). I also find drinking too much in one go makes me feel "sloshy", which causes nausea too. I try to sip gradually through the day. But that's not so easy when you have so much to drink! I'm a Marmite hater it might be just the thing for nausea though. Anyway, I hope you feel better soon, and hugs to you too :)

SandwichYum it must be very difficult with such young children. It's good your mum can help. A supportive family makes such a difference. One day at a time is definitely a sensible approach. Next cycle you will have a better idea of which days are likely to be better/worse.

Waving to all.

Royal Mama - I was totally fine post op and post chemo. I finished my last chemo on Oct 7th, and then had double MX and immediate recon on Nov 12th, and I would say I was totally back to normal by Christmas (but I think the recovery is much easier with implants rather than autologous recon - which are you?)

I put off going back to the gym/dieting until Christmas was over, so went for my first run on Monday 28th Dec and the boobs were fine. Energy was low to begin with, but amazingly I ran 10 miles on the Saturday 2nd Jan (as per the marathon training schedule I am following) - I thought that was goig to be impossible but it was fine, despite not doing any exercise since the day before my surgery.

I tried so hard not to overeat on chemo - my oncologist really hit it home with me that I needed to maintain my fitness to cope with the commuting to London for chemo - even so I put on over a stone but I was very fit/slim beforehand and am desperate to get back to where I was!

Boobz - I've actually just started the 5:2 diet as I have an awful lot of weight to lose. The drugs I'm on plus menopause really don't help, but I need to become more healthy. This is my first week and I've lost 2kg, so I'm pretty pleased.