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!

Back to hospital today for chemo. DH is going to talk to them about yesterday!
My colleague is also having chemo today. Unfortunately she's losing a lot of hair despite using the cold cap. I don't think she had read what to do and she had quite thick medium length hair that she had cut after her 1st chemo. Now it is falling out in clumps
I've e-mailed her a booklet about how to prepare hair for cold cap and a couple of links to scarf/bandana sites but she says she is too busy at work to read them . She has gone to hospital today with her daughter, so I hope that will help.

Just to update you, seen by lovely doctor, had scan & mammogram and all clear. However, the dr did say he had no idea what was causing the skin puckering as he had never seen it look like that before! He put it down to my running (with big boobs), recommended wearing a sports bra all the time for the next month and come back for review. Thank you all for your replies - they really did help me through a distressing time, good luck to you all x

Great news reikzen. What a relief.

What a pain Lily. I hope your levels are now up nicely but a shame you had to miss out on the cinema. How did your chemo go today?

Nice to hear from you dinster. I used to rinse my mouth with salt water but was lucky that it wasn't too bad. Hopefully someone else can help.

Mrs- Dublin sounds great.

Last day at work today as op is on Monday. A lovely parent who knew I am going in brought me prosecco, chocolate and about 6 magazines. Such a lovely thing.

Good news Reikzen, I'm glad it turned out alright for you.

Lily, missing your evening out must have been very annoying. I hope the new blood is making you feel better.

I went in for another ct scan today. It was quite upsetting as I was chatting to an old lady and her husband in the waiting room when she suddenly collapsed. She soon had the crash team working on her on the floor. Her poor husband was beside himself. It was a pretty shocking experience. I don't think I would like working in a hospital.

later I was fed into the ct machine all hooked up to a drip in my hand so I couldn't move my arms when they suddenly decided that they didn't want me to have my jeans on. So I had the comical experience of a radiographer trying to undo my belt and pull my jeans down while I was half in the tube! It was like bad sex.

No results for two weeks. So the scanxiety will now commence.

Sleepy what a trauma at the scan. Hope old lady is OK. I always wear jogging bottoms (with no metal zips) for scans but thought of wriggling out of jeans using one hand ...
Do you have a Port - no finding veins and two hands free? Particularly good when treatment goes on and on for years.
End of my transfusion trauma. Got to hospital early yesterday for chemo. DH about to launch into discussions but several of the nurses rushed out and commiserated about what happened and what could be done to prevent such delays in the future. So no need to complain and presume that Sister will have a talk with the nurse in charge of my treatment on that day (who isn't my favourite but has problems in her life so I don't want to make it harder for her).
So had super quick chemo and bone injection with raucous conversation (hope other patients weren't in vicinity) with nurse and Maggies lady about problems of workplace loos when your insides aren't too good!
Hope you all have a good weekend - have DS1 home so will discuss his recent trip to the Middle East and try to find his ski gear.

Hi everyone, hope you all have some nice plans for the weekend. I am hitting the shops in the hunt for a new foundation which is more moisturising for my newly dry skin. I hate beauty counter ladies but it's got to be done. I am feeling good at the moment, the EC was horrible for the week following it, but this week the tiredness and water retention don't seem as bad as after the Tax. There's no permanent headache or funny taste in my mouth. I even had a glass of white wine last night with dinner, the first since being diagnosed. More nails are lifting, but they don't hurt so that's one consolation.

Great news reikizen
lily I hope the tansfusion has made you feel better and you will get your night out another day.
dinster, I'm not sure what you can do to help sores in the mouth, I had one at the back of my throat which lasted a few weeks, I drank milk before bed which seemed to soothe and help, you could try that. I also got some gel from the chemist (daktarin?) to treat and prevent thrush which I used following each cycle and I haven't had any sores since then.

Good morning al. I am proud and excited to say that I had my first full night's sleep ( no interruptions or loo viists etc) since my surgery last July!
reikizen i am so glad for you. May you enjoy nothing but good health.
Dinster warm water and salt are what many people swear by dor mouth ulcers. The medicine they gave me was preventitve rather than to treat it after it cane out I think. I was lucky in that I never had them during my 16 rounds of chemo. Hope you feel better soon
sleepy oh my you did have an exceptionally dramatic scan day! Hope the lady was fine in the end? As for your jeans dilemma, I kept visualising it in my head and it made a great movie scene
Hope you all have a restful and anxiety free weekend.
Waving to all.

dinster I had an awful mouth ulcer a few months ago, not chemo-related. I discovered iglu gel. It is a thick paste and forms a complete seal over the ulcer so nothing can bother it. It feels a bit weird at first, but it works amazingly well.

royal fingers crossed that you don't catch the bug, and that DS2 feels better soon :)

reikizen wonderful news :) I hope the sports bra helps.

lily glad your chemo went quickly and that they acknowledged yesterday's issues.

Sleepy what a day! I hope the lady was OK. I always have to take all my clothes off and wear a gown for scans. I usually grumble to myself a bit as they are so undignified. But I shall now be grateful I don't have to be undressed whilst in the scanner fingers crossed for your results. Sorry you have to wait so long.

fresta good luck with the beauty counters! :)

Speedy that's lovely :) good luck with your hospital packing and enjoy your weekend.

Hi all I fell off the thread. Nothing much to report, I have a cold which I hope won't delay next week's chemo.
at sleepy's jeans/scan story!

Hi, I'll just copy and paste from my previous thread, which I put in chat!

I just really need some support... I gave birth to twin boys, 2 weeks ago, who are still nameless. DS is 9 and a half - he was diagnosed with AML, 9 months ago, he is getting through it like such a trooper, but I know he is struggling. DH works too much, but refuses to stop, so I'm doing it all by myself. Sorry this isn't much info, just need some support :(

Thank you x

Puffles you must be going through hell. What a shame you can't fully enjoy these first precious moments with your new boys because your lovely ds1 is so ill. Having a sick child must be absolutely dreadful. I hope he gets better soon.

I didn't name my ds for two weeks. Everyone was getting quite impatient by the time I committed to a name, I would have been terrible having to choose two!

Puffles welcome, but sorry you're here. Hopefully Lily will post soon as her son had leukaemia. I'm not sure what type. In the meantime I am sending you a huge hug. That is a lot to be getting on with, especially by yourself.

Is your husband using work as a coping mechanism? It is not fair that you are coping with this alone, especially when you've just given birth.

What treatment is DS having at the moment? I think usually children's teams are very on the ball with side effects, but if there's anything he's struggling with then we might be able to help.

Congratulations on your new babies how long do you have to choose names? We can suggest baby names if you want some distraction I like Henry and Phillip.

Weekends are always a bit quieter on here, but hopefully others will post soon.

Cross-posted with Sleepy

Hello, thank you :)

We have a few names going! Aidan, Elliot, Henry (so great suggestion ;)), James and Louis! DS has suggested his own 2 names - Jacob and Lucas (Jake and Luke) I actually really like them :)

We aren't exactly really struggling with money, but twins will definitely put a strain on things, so he wants to work... :( I get it, but it's so tough. He is having chemo atm and is struggling, he was in PICU one and it scared the life out of me, he is normally home for a week or so and then stays in for more intense treatment. He is sooo strong! His voice isn't doing too good and that upsets him as singing (he has a beautiful voice) used to give him hope :( I blame myself a lot for not being able to be there with him full time, but I'm finding it impossible with 2 newborns... Thanks a lot though, I'm glad I have found here!

It's not your fault at all. It's a shit situation all round. Do you have any family or friends nearby who can visit him? Or look after the babies when they are a bit older so you can visit?

I was 21 when I was diagnosed so I was referred to CLIC Sargent. Do you have a CLIC Sargent social worker? They are fantastic.

I'm sorry his voice is suffering how much longer will his treatment go on?

Aw those are all lovely names. Would you use his choices are first or middle names? I am going through all the combinations now... I like Henry Lucas and Louis Jacob. Jacob and Lucas both as first names might sound a bit too similar. But then that could be cute! I can see why you're struggling to decide :)

Sorry, that's a lot of questions. I will stop interrogating you now :) I hope you are managing to get plenty of sleep. You must be exhausted.

Is his throat sore?

All my family live in Australia :( they don't visit very often, so I don't have anyone who can help me, unfortunately! Yes, his throat is very sore, he has lots of ice lollys, but aren't very helpful. I'm so sorry to hear about your diagnosis, but really hope you're doing good no, we do not! I'll have to ask about it :)

They think he will need a stem cell transplant, so not sure on the length, this chemo round will be another 4 months.

Not sure on the names! Maybe as middle, maybe as first, will try and talk to DH about it :) he is so knackered and is doing the feed, while I prepare food for tomorrow, it never stops x

Puffles, many congratulations on your twins. What an incredible emotional (and physical) load you must be going through - it sounds as though your DS and you are coping amazingly (though I realise as I type that is exactly the kind of thing that can be irritating to hear from strangers -sorry).

Not sure if there's anything practical I can do from South London, but please shout if so. I hope you're managing to rest a little here and there.

I like your name choices, esp Henry and Aidan!

Thanks all v much for the mouth sore tips; I'll give 'em all a go.

Hello all. Welcome puffles sorry about your DS1 and best wishes for his treatment and recovery. Congrats on your twins too! You have quite the load there. It is hard enough being a new mother! Do feel free to come on here anytime to ask or just offload. We totally understand how angry or tired or usoet you could be at times! I think you and DH doing the shifts is a sensible idea. Have you got any close friends or trustworthy neighbours who can lend a hand? I know how hard it is without family. I am pretty much on my own and dealing with my cancer. We do manage to find strength though . Not that we have any choice!
Wishing you all the best and by the way I find all the names above to be cute:)
Take care all.

Welcome Puffles. My DS2 has leukaemia, but fortunately (Ho Ho) it is CML rather than AML. He was diagnosed whilst at university. There had been a few "signs" but we hadn't picked up on them. Eventually he got a big bruise on his leg that he thought was a football tackle injury, but his thigh got very swollen and his friends took him to A&E where they looked at the injury, examined his stomach (enlarged spleen) and took some blood tests.
Anyway, he only had one round of chemo (just in case it was AML rather than CML) and once CML was confirmed he went on to a wonder drug (Imatinib) which has transformed treatment for CML ... Just wish that something like this was available for all cancers. Four years later, he's completed his degree including an international student year in the USA, then done an MSc and is now in a job in the City. He plays lots of sport and leads a normal life apart from taking one large pill a day and going to hospital for check ups.
Anyway, I hope your son has as good an outcome, though, unfortunately, his treatment is harsher!

Puffles There is a long running thread on childhood leukaemia somewhere on MN (probably in General Health or Children's Health. I haven't noticed recent postings but a search should find it.

Thank you all :) I'm really sorry to hear about your diagnosis, but glad you're getting better! DS goes back to hospital soon and I'm dreading it! :(

Puffles- congratulations on your twins . What a lot you have on your plate right now. Do you have any friends you can rely on to help out? Your eldest ds sounds wonderful. Keep posting. We're all here.

Just set my alarm. Have to be at hospital for 7.00. No idea where I am on the list though.

Speedy, hope you manage some sleep and are first on the list tomorrow.

Welcome puffles though sorry you find yourself here
Good luck speedy x