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!

Good morning. Sorry to be a moaner when I know many of you are feeling really poorly at the moment but just wanted to get it off my mind. I just feel like everything is on hold until I have my appointment and know for sure what I am facing. I can't plan, don't want to speak to anyone, I am having almost daily migraines (and the woman in the chemist gave me shit about buying migraleve, if I hadn't been with dd2 I would have lost my temper with her), have lost motivation for exercise and healthy eating, I can't concentrate at work. I feel very low and am worried about how I would cope as I am so crap now, and there may well be nothing at all wrong with me!

Hi reikizen, what you're going through at the moment is really tough, waiting for news is almost the worst part of this. Have you had a date for your appt yet, I assume you're going to be seen within two weeks so that could be before next weekend?

This will sound very strange but if you do get a positive diagnosis it comes with an immediate plan of action. One appt, bad news then a talk about what plans they have put in place to treat you. Although you come out reeling you should also come out feeling as if there is control, a plan to work to which usually kicks off within a couple of weeks.

Yes it's dreadful and sometimes there have to be more tests but usually it's all very quick and it does feel better to know what you're facing. There are many different types of BC. I don't think many people understand that until they are forced to learn about it. You just imagine someone incredibly ill, with no hair and the very worst outcome. Yes of course that happens but not to everyone and treatment is very effective now. Don't write yourself off yet.

Keep talking if it helps, we're all at different stages and have had very different experiences but there's usually someone around. Hopefully you will be seen next week, I won't pretend it will be easy but they are used to dealing with very frightened women and are usually lovely.

Hi reikizen
I had so many migraines in the weeks leading up to my first appointment. It's a totally normal response to stress. I also failed my first exam on my course - a practical task - because I was shaking too much to complete the assessment. After I had my diagnosis I went back and repeated the assessment with a reasonably steady hand. In fact it was a matter of honour to leave my course as someone who passed.

To a certain extent everything is on hold until your appointment. You will be going through daily life on autipilot, but this will pass. If you are in the small minority of people that have cancer you will have a plan put into place. Breast clinics are good at differentiating between normal and abnormal changes. You may need to wait a further week for biopsy results or you may get an answer on the day. In the meantime we are here to offer you support.

Fresta I'm glad you managed to get your birthday celebration in, even if it was a little delayed.

Rekizen, I am also waiting for scans and appointments to try and work out what is wrong with me. The c word has been used but they are not sure - I think it is normal to be worried to the point every little ach le has you worrying but please try not to if you get the worst case scenario when you have your appointment at least you know what you are dealing with and can get a plan of action in place if not the you can put it behind you and move on.
Well done on not loosing your cool in the pharmacy, sounds like you are doing better than me I think I would have just burst into tears (I think this has been my way of dealing with things).

Hope everyone else is having a good weekend x

Yes, waiting for any test results is a sobering thing. Mine are on Thursday, after a biopsy to check for the mystery area on the skin. After five years, you'd think I would get used to waiting for results. But nope. Not really.
Sending love to all.

Sending positive energy to all those waiting for test results this week.
Two weeks after first chemo and feeling more or less back to normal. Hair starting to tingle. I guess it will start falling out this week...
Does anyone have the energy to exercise? I was active before the wle but don't really manage anything now!

Best of luck Amber, hope the week doesn't go too slowly for you.

summer, I have zero energy for exercise after 5 sessions, just walking up slope is a challenge . My hair started falling out after about 12 days.

That makes me feel better, except I feel like that after 1 lot of fec 😄

Good morning all. DS2 still unwell. I have had to keep him home and am knackered from all the looking after
I wish all those awaiting test results all the best. I hope your wait is not long and the news is good.
summer i used to be very active. I walked fast, I talk fast..why I even type fast as one can tell but since chemo ( and even now two weeks after my last dose) I feel lucky to be able to do one energy consuming act( mainly cooking!). It is so hard to explain to others this fatigue and what it feels like. People assume it is like bing tired and suggest things that you know will NOT help:(
My hair on my head is a little more than peach fuzz now, but I am still covering it. I think in about a month it will start looking okay to leave uncovered. However, my eyebrows and eyelashes are gone and it really is worse than losing my head hair. Anybody know how long on average it takes for the lashes and brows to grow?
Hope everybody has a good day ahead( you can see I have wrestled with sleep and gave in!)

Hope everyone had a nice weekend. Good luck to everyone waiting for results it is a horrid time
I can't remember once my eyelashes and brows came back but I remember that when they started to grow they came back really quickly
Love to all

Morning royal, there seems to be a conspiracy to stop you sleeping, I hope your son picks up soon so you can rest.

amber, wishing you well for Thursday. I don't think any of us will view any sort of testing in a relaxed fashion again ever.

fresta very glad to see you have been able to enjoy the weekend and celebrate.

For us, dd2 went back to university on Saturday so we're readjusting to life without her again. I'm still waiting to hear the results of my pelvic scan two weeks ago. I know the cyst is smaller than four months ago but don't know what the next step is. Gynae seem to be a much slower dept.

I am trying to sort out some antidepressants at the moment for anxiety. Does anyone have any recommendations? I hate taking drugs and was enjoying my month off the daily pill popping, but it has got to the point where dh is asking me to consider it as I am a mess. Wibble.

Hi Sleepy, I got some diazepam while I was waiting for scan results. I found the process very difficult and the diazepam took the edge off the anxiety. I took them for a couple of days until I got my results. Do you have a treatment plan? I felt a lot better once I had this in place. I found the endless tests and waiting made me get more and more worried. My mum told me to call the doc as I was a mess too!
Hope all those waiting for test results are doing ok. Sending positive energy.

Hope you hear soon Mrs Rhod

Sleepy I haven't, I have considered it but so far have managed to muddle through. I think you are very wise to ask for help though and I hope that you find them useful x

After my first hospital apptment with Dr Doom, I was unable to eat more than a banana and a Cadbury's flake two days running. I knew it would be a long haul - ginormous ovarian cyst/tumour - and, yes, (to Mrs) gyne is a more drawn out process so I went to my GP. She prescribed diazepam short-term and anti-depressants - seroxat - long term. The diazepam was to tide me over till the anti-d's kicked in. I was eating steak and chips the same evening! Anxiety always goes to my stomach. Only needed them for a few days and then for special occasions.

The road to diagnosis from first visit to GP to surgery took 8 weeks on the 'could be cancer' pathway - CT and MRI scans, biopsy, transfer to cancer centre, major surgery, path results. Fortunately, a v happy ending, but I don't know how I'd have managed without medication. The anti-d's were low-dose. Obviously, I still worried, but was able to function relatively normally. A friend in the USA tells me it's practically routine over there to offer pharmaceutical help. I didn't feel weird at all, just closer to normal.

I was given Seroxat because I'd had it some years previously and hadn't had any problems coming off it. You have to do it very slowly. I think there are better ones now. Your GP will be able to advise.

Hope it works out for you. I can still remember that dreadful feeling in my stomach.

mrs I hope you get an answer soon.

Sleepy I hope you can find something that works. In the meantime, you can wibble as much as you need here.

I went to see my GP a few days after my diagnosis and he insisted on prescribing diazepam as he thought I might crash at some point. To be fair, I did skip into the room with a huge grin on my face and tell him I had bowel cancer thankfully I never needed them, but it was reassuring to know they were there.

Thyme how are you doing now?

Themodernuriahheep how are you getting on?

royal I hope DS feels better soon and that you can have some rest

Summer I don't think I exercised at all during chemo!

Waving to everyone :)

I saw a haematologist today, and she's happy for me to carry on taking warfarin during chemo subject to her making a few checks about any adverse reactions that have been reported previously.

So I should be consenting for treatment this week. I'm still not feeling healed up, but I suppose it's only 2 weeks since my surgery so maybe I need to learn to be patient. I have had a busy day today, and now feel shattered. This is only post-surgical tiredness. Goodness knows how I'm going to be after chemo.

Oh what, how kind to ask.

I'm exhausted but hope this is the nadir and next week will be better. I see my consultant then. At the moment I can do something for 10 to 20 mins and then need to sleep.

The plus side is that I have lost 1 1/2 sizes on the top, 1 on the bottom. I do hope the nausea continues !

How are you?

Yes, explaining tired is hard. Ds keeps asking what's for supper etc and why isn't it ready, and why have I not cleared up the house.

Best explanation I have seen on a thread is well I have just been crushed by a concrete weight, or maybe not concrete but huge heavy duvet. It us overpowering.

Good morning all. Thanks to those asking about DS2. He is still out of school, but getting better. I, however, am still quite worn out. Culd be the remnants of the chemo, could be the lack of proper sleep or both!
sleepyforest i hope you get the help and respite you need. Have you tried alternative anxiety reducing techniques like yoga and mindfulness? I have not tried either, but some people i know who do swear by these.
Thinking of those awaiting results and wishing those soon to embark on the chemo ride a bumpy free trip:)
Have a good day all.

Hi Royal I hope your ds feels better today , I have tried both yoga and mindfulness. Let's just say that getting a person with cancer in their lungs to focus on their breathing in a quiet room is not a recipe for relaxation. More like hyperventilating into a complete panic attack! I find a couple of hours playing on the ps4 much more relaxing.

Royal glad ds is feeling better, mine has been ill too nothing like a clingy 5 year old to take your mind off things.

Well still no further forward in finding out what is wrong with me but they are now suggesting an auto immune disorder rather than the c word but it takes them time to work out which one so still have my fingers crossed and I also have been given some beta blockers as the waiting had been making me anxious not sure I am getting on with them tho cos although they stop my body from having the affects of a panic attack my brain is still panicing if that makes sense.

Hope everyone else is ok

Morning everyone,

Royal glad your DS is feeling a bit better. lozwil, I hope you can get to the bottom of it soon and get some treatment to sort you out.

One of my finger nails is lifting off at the side , if this happened to anyone else how did you keep it clean, I'm worried it's going to get filthy underneath and infected?

themodernuriahheep sorry you're still exhausted. I hope next week is much better :) is your DS old enough to help at all? Good news on the weight loss though - I'm a bit jealous!

Building up activity gradually and resting when you need to is definitely the way to go. I'm sloooowly being more active after a period of being run down/having surgery issues. Last week I managed an outing six out of seven days, which is pretty good. I had to have a lazy day on Saturday though as pain was worse. I'm still in bed now after a late ish night last night

lozwil I hope you get some answers soon. That sounds tentatively good news, at least that it isn't cancer. Sorry your boy has been poorly too. I hope he feels better soon.

royal chemo tiredness does take a while to wear off, so it's probably a combination of the two. I hope you manage to get more rest this week :)

Mysillydog good news from haematologist. Hopefully you can get started soon! Two weeks is early days, but hopefully you'll feel more healed soon. I felt very vulnerable at first, as though I'd burst open at the slightest provocation.

Waving to everyone.

A quick dash in. Will read properly later.

Fresta- my nails started to lift but i did keep them (and they only started to do it after I finished chemo). I kept them as short as I could and wore gloves for cleaning and stuff like that. Are you wearing black/very dark nail polish? We were told to wear it to try and protect nails- something to do with reaction of light and the Tax.

Amber- hope Thurs comes round quickly.

Sending thoughts to all that are feeling grotty and exhausted. I don't think anybody who hasn't been through it understands how debilitating it can be and that it isn't normal tiredness.

off to sort out options for eldest son- very scary that he is old enough to do that!