Lacies, elephants, potato-based snacks... Whatever we are, this is our 57th CANCER SUPPORT THREAD

[WhatWouldLeslieKnopeDo]

Welcome everyone to another cancer support thread. This thread is open to anyone with any sort of cancer. And we have plenty of hands to hold if you're undergoing tests for cancer. We are always pleased to wave people off with an all clear, and there's plenty of room here if the news isn't what you hope for.

So don't be shy! We are a friendly bunch and there's probably someone who has been through something similar. Nothing is off limits here. Scream, shout, swear, stamp your feet...

I'm sorry that anyone needs this thread, but very glad that it's here. Cancer is shit. But it's a little bit less shit when you have people to share it with.

Our previous thread is here

labradottie, so glad to know you were up and able to shower the next day. Hope you can get your records soon!

chewing, thank you very much -- good luck with your scan, and for royal too

WWLKD, thank you for all the answers! Everything you said makes sense.

I decided to hold back on the gifts as you said. The first surgeon I met (the one doing the mastectomy) said I'm very likely to have chemotherapy, maybe not radiotherapy -- it would depend on the pathology results, which will include sentinel node. But I've not seen him since he referred me to the plastic surgeon (in same hospital). I'll ask the BCN while I'm recovering, and you're right I guess they will discuss more with me post-op. Just hard trying to look into the future as a patient, probably due to feeling like my life is no longer under my complete control...

A friend told me about the ondansetron -- having never had anesthesia before, I won't worry about it or the prescriptions for now.

suffolk, do keep us posted. It's the not knowing and keeping up a calm exterior, isn't it, while the hospital seems to have its own inscrutable timing on finding/sharing the diagnosis and treatment plan (which I'm sure is going along as it should), at the same time the pressure of making sure you ask all the right questions. Big hugs to you and your baby!

Thank you all for your wise words and reassuring messages.

It is I'm afraid as suspected: it was confirmed yesterday that it is a muscular sarcoma and he will need treatment pdq to remove it. We'll find out today the timeframe but it should at least be before Christmas.

Even though we'd kind of been expecting it all along, it's a terrible shock to actually go from hypothetical to reality. Somehow we have to tell the other kids too and I'm really dreading that. Any tips for this would be great.

So sorry Suffolk .Macmillan have some good info about telling children.

chewing - good news re your referral and I hope he/she lives up to their reputation; have you Googled?

Also good luck with your scan today and hope you enjoyed your curry.

Leslie - hope you are feeling a little more comfortable as it sounds very painful.

Debska - good luck with your treatment; someone I work with is now a year or so on from treatment (he had surgery and the radioiodine/isolation) and is fully recovered and just has to have his medication tweaked every now and then.

Java - haven't had surgery yet so can't answer any of your questions but how nice of you to think of chocolates for your team. I'd be far too stressed to even consider it.

Suffolk - so sorry to hear about your baby but it sounds as though they have now made a diagnosis and will start treatment. My advice is to write down your questions before every appointment as it is easy to get side-tracked and forget what you want to ask.

I'm getting more and more nervous as Thursday approaches for my first chemo session - I think it's more a fear of the unknown.

On a positive note I had a fab night out on Saturday - cocktails and curry. Unfortunately I was in the doghouse with OH as I had a hangover on Sunday and didn't feel too great after promising that I wouldn't drink much and would be home early. Epic fail on that front but given that Christmas and New Year are going to be a non-event it seemed only right that I should have a last blow-out.

Hello all.
chewing how did your scan go today?
leslie i hope you are feeling better today?
cookiepussof course you are anxious. Chemo is nothing to look forward to but as you said, it is the unknown that is scary. Having done chemo, I found it doable though you will need to reorganise your life around it. Is anybody going along with on Thursday?
suffolk i am awfully sorry the diagnosis has been confirmed. What ages are your other children? I apologise if you have already told us their ages. I agree that Macmillan would be a great place to seek helpful guidance on how to talk to your baby's siblings. You will need to work together as family because you will have quite a lot to juggle. Blessings

Evening all.
Suffolk sorry to hear about the diagnosis. I hope treatment goes as smoothly as possible

Cookie Yes I have Googled and was very impressed. I am seeing a professor who is a top oncologist, heavily into research and who also helped develop one of the major breast cancer drugs that is in use today. He also lectures around the world and has written hundreds of published articles. Don't think I can get much better than that

I hope your chemo goes well. The first session is daunting but I quite enjoyed it in the end. You can still drink a small amount whilst having chemo if you fancy.
royal my scan went well although I have a lovely bruise from the injection.

Evening all,

I hope you all tucked up warm.

I'm not sure if I can ask this question here, so If I should post elsewhere, let me know!

I finished 9 cycles of chemo ( Cyclophosphamide followed by Methotrexate) in August.

I wore a cold cap for my first couple of sessions but gave up as I couldn't deal with the pain.

My hair finished falling out in June and by September had grown back a tiny bit and I looked a bit like a fluffy little chick.

But.... I have the impression that it hasn't grown at all in the last month in certain spots like at the front and behind my ears... It appears to have stunted at a couple of centimetres and it's not a great look.

(It's made worse by the fact that it's no longer completely obvious that it's non-intentional, It looks bad, but it could look like it's an intentional hair cut).

It's starting to really upset me as every time I look in the mirror it's a reminder when all I want to do is get on with the rest of my life.

Do any of you lovely ladies have any experience of this and how long it could take to start properly growing ? Or any miracle tips and tricks?

Thankyou

Good morning,

pimmsy hello :) of course it's OK to ask here. Hopefully someone will be able to help. My hair is growing back on chemo but random patches are growing at different rates I'm very tufty!

chewing good that your scan went well and the specialist sounds great too. I hope he is reassuring. When I first read your post about drinking I thought you meant actually during the chemo session - I was imagining you sitting there with the IV in one hand and a glass in the other!

Cookie I'm having chemo tomorrow too so we can be chemo buddies I hope you're not too nervous. What time are you going in? It's really not so bad. Some people hate it. But it's mostly just sitting around waiting for things to happen. The nurses are really nice and often the other patients are friendly and you can have a good chat. Take snacks and things to do though. Are you going on your own? If so, make sure you take anything you might need, including drinks etc, as you probably won't be able to nip to the cafe or anything.

Also with FEC, one of the drugs (the epirubicin) is bright red and given in a big syringe that they administer slowly so the nurse will sit with you for a bit doing that. Apparently it smells funny too. Sorry if you already know that. But thought it might be a bit unnerving if you didn't expect it!

Suffolk sorry to hear about the diagnosis have you been referred to CLIC Sargent? If not, you can ask your team to refer you. They provide all sorts of support, including helping you to talk to your other children

java I hope your op went well

royal I'm glad your scan went well. I hope the dizziness etc wore off quickly :)

Have a lovely day everyone!

Morning everyone, hope all goes well for everyone having chemo or tests or scans. I had my 17th herceptin yesterday so just one more to go . Cookie I had fec and found that the epirubicin gave me a weird taste in my mouth just for a couple of seconds and also made my wee go bright red too for a day or so. My onc also told me it can give uti symptoms so he suggested I stock up on over the counter cystitis relief sachets which were really handy as it usually kicked in either at night or at the weekend. Obviously if you have a temperature or don't feel well then get some medical advice but I was fine and lucky that the sachets did the trick. Love the thought of Chewing with a glass of something nice whilst having chemo, that would be very civilised. Hope you're all having a good day, the weather here is mild, breezy and the sun is shining so I'm off out for some fresh air.

Chewing - well he sounds excellent so you should be in good hands.

Leslie - for a minute I thought chewing meant I could have a glass of wine during the session too; I've been told I can have the odd glass of wine but best to avoid in the few days before and after chemo, which is why I overindulged in Saturday. Blimey I sound like a complete lush!

I have to confess I am a bit nervous but more of the side effects than the actual session, particularly as it has been drummed into me that if I have a temperature or feel unwell I MUST CALL THEM (OTHERWISE I MIGHT DIE FROM A REALLY HORRIBLE INFECTION)! I have been taking my temperature all week to see what the norm is.

My appointment is 1pm tomorrow and DH is coming along; if he is not around for any of the sessions then I have a few friends that have all volunteered to keep me company if required. I have downloaded lots of books onto my Kindle and even found my old Nintendo which has a few games on if I get really bored.

I've been warned not to eat anything that I really like during the session as I may find that I will go off it completely for ever afterwards! But I think I will be too scared to eat.

Was told about the "red stuff" but not been told that might give me UTI - just that I need to drink plenty.

rovercat - I am so looking forward to the point where I have got to where you are. Enjoy your walk!

I didn't word that very well. Of course I would not encourage drinking whilst having chemo
Cookie I was scared by the risk of having a high temperature but have been absolutely fine. I've also had very few side effects. I think they tell you the worst case scenario just in case so try not to worry too much.

Cookie try not to worry about it too much. Easier said than done I know. The chances of you dying of an infection are incredibly slim. They're just very cautious about it. Many people get through chemo without ever having to go into hospital for a temperature, so hopefully you'll be one them :) the main thing is to definitely report raised temperatures and any infection symptoms, as then they can treat anything quickly and prevent it developing.

rover yippee! That's fantastic so nearly there. I hope you had a nice walk

I'm still waiting for the nurse to phone and let me know if onc has approved me for chemo tomorrow. It's all a bit of a palaver

Walk was great and so nice to be out in the sunshine and fresh air without the air being too fresh
Cookie you'll be amazed how fast the time goes. When I was diagnosed I was convinced that I would never get to the end of treatment and when I was told that it would last for 15 months it really felt like a lifetime. Some of it is good some of it is less good but apart from a couple of infections when I was having chemo and a wound infection after surgery I'm still very much still here and looking back I can't believe how much time has passed. I too was terrified of chemo and convinced myself that my life would be over for the 5 months I was having it but it flew by. First week was great, second definately better than the first week and week 3 was reasonably normal apart from preparing for the next round!! Emend is fantastic for keeping the sickness at bay and Omeprazole is brilliant for indigestion (1 a day and no heartburn ).
Leslie hope your nurse has got back to you, I hate waiting for calls too.

rover yes, she phoned an hour after that and I can go ahead tomorrow :) I'm glad you had a good walk!

Yay for chemo Leslie

I don't even drink anymore, but I'm quite tempted to take something with me I wonder what they'd do! I'm more of a Southern Comfort girl really

Actually, I once had an NHS appointment but at quite a fancy private hospital. It was more like a hotel really. And the cafe sold wine

Thankyou leslie,

I think I'm just going to resort to keeping my hat on as much as possible!

and Bon Courage to everyone

Hi pimmsy. I don't come on here much anymore but just saw your post, my hair came back slower in some areas than others so sounds very normal. I looked like I had a receding hairline for some time!

Leslie - one arm with the FEC and one arm with drink of your choice. Sounds tolerable to me.

Good luck for your chemo today.

Pimmsy - I have read that it can grow in spurts and then it feels as though it stops growing and then starts again. I'm getting a good collection of hats together as I expect to lose mine by Xmas/New Year.

I have a wig sorted out - had to put it out of reach of the cat as she was eyeing it up as if it might be some furry creature she needed to kill. I found her systematically pulling apart the pom pom from a hat she had managed to run off with.

Another two hours and I'll be there - will report back as soon as I'm able.

Hello all. just wanted to pop in and wish Good luck to those having their chemo today.
Pimsy, post chemo hair has a mind of its own! I often wish i were still bald because it such a mess now it has grown!
Waving to all the others.

Good luck today Cookie :) I hope it goes smoothly. Maybe we will be in the same chemo unit without even knowing it I'm wearing bright red so you'd definitely spot me!

royal how long is your hair now?

Sandwich how are you doing?

pimmsy thank goodness it is hat weather at the moment I hope the slow bits catch up soon! Could you bear to trim it a bit to even it up?

My chemo is going alright. Just the usual really :) though the chemo unit has been Christmassified!

Ho ho ho Leslie you'll fit in well wearing bright red

we might as well get the thread all christmassy too!
Leslie, my hair almost to my shoulders now but wildly curly..a real mop! I am rubbish at everything to do with makeup and hair and so I just use a wide hair band to make sure it looks as "tidy" as possible.
Strange I am not staying up at night worrying about my scan and blood test results..is that a bad sign I wonder???? Or am I just so busy and tired? Normally I would be fretting and anxious..but not this time round. Surely, something is not right.

When do you get your scan results royal? I was told they will be 1-2 weeks which seems a long time to me.

Same here Chewing..told not to expect anything before ten days. I read that is not unusual but it is annoyingly long.