Cancer support 67. Waiting for tests, just diagnosed or needing a handhold through treatment

[purpleunicorns]

Welcome to the 67th cancer support thread, the previous one can be found here.

If you're looking for advice, have any questions or just need some support while you're waiting for test results or treatment to start then pull up a seat and make yourself comfortable. You can rant, cry or scream if you need to but we do have some laughs along the way

No questions are silly so please don't feel embarrassed about anything you want to post. The chances are at least one of us has been there at some point!

There's a whole variety of people with different cancers at different stages and nobody goes unanswered, the people on here are amazing (even if I do say so myself ) and they have been a massive support to me over the last year.

If you have a friend or family member with cancer then there's a support thread for you here with lots of practical advice to help you support your loved ones

At the beginning of each thread we give a brief summary of who we are and what we have to save us trailing back through old threads

Here's mine: Im 35 and was diagnosed last October with cervical cancer, despite chemo and radiotherapy I found out in June that it had spread and I'm now having palliative chemo to keep me stable. A scan a few weeks ago showed that there was no new growth after 4 lots of chemo. 2 more chemos to go for me so I'm hoping it stays that way

Oh no noodles everything has happened at once. Good luck for tomorrow, I hope your parents can come soon and that you don’t have to stay in.

Saw my Snr Reg today in clinic and she has agreed to change the chemo mix so that I don’t feel as ill this time, fingers crossed. She’s also prescribing another sickness med. I said I don’t want to end up on a trolley in A&E for hours next weekend while they decide what to do with me if my temp spikes. She said that my WBC count was good last time, so with the change in dose I should be ok and not neutropenic. Important thing is to take the white cell stimulation injections as early as possible on the days I have them.

Oh noodles nothing like everything going wrong at once is there. I would be round in a shot if you were my friend or neighbour. I know poorly kids want mum, but there must be someone who can take the pressure off a bit?

I'm not surprised you're worn out Noodles! I'm stressed just reading all that. Hopefully your parents get over the bug soon and can help you out again. Try and get an early night if you can and whatever isn't done will have can wait, you getting rest is more important

Don't forget to pack a phone charger and toothbrush!

Oh and honestly the hospital bag would be the least of my worries. I’m sure they will find things for you if you need them. Phone charger (how are you going to update us otherwise? ), PJs and book would be my priorities

Another one from Yorkshire here.

Sending virtual hugs to noodles and Leslie

Noodles

Sorry I've forgotten what op you are having...what a nightmare that your parents can't come at such short notice. Any chance your Dad's bug is just a 24 hour thing and hopefully he might feel well enough to come in a day or so? Do your parents live far from you?

Keep Calm

It seems to be quite usual for lumps to stay the same. I was warned about this before hand and told not to be upset if there wasn't a reduction because although they obviously would like to see some shrinkage they know it might not do. I was upset/disappointed after my 3rd chemo as MRI showed it had stayed the same at that point. It only showed some reduction after 4th chemo (on examination not MRI - due for another one of those this week so will see what comes of that).

Sorry I'm shattered but just popping in to wish you lots of luck for tomorrow noodles what an utterly shit time you've been having! I hope you manage to get some sleep tonight.

Waving to everyon else. Goodnight

Thanks everyone, feeling less chaotic now I have sorted a few things for 2mo.

I am in the SE keepcalm but thanks!

In fairness, the stuff I did that wore me out at the weekend was fun stuff we went to see Aladdin at the Hackney Empire on Sunday which was good fun.

I haven't got the phone charger in yet, I will. I have my kindle and a book, so that should be enough as my friend is coming for company too. Dad was still ill today, his friend has a similar bug, Mum doesn't (yet) they will probably come up at the weekend now to make sure they are clear and I will muddle through until then. We had the nori virus one Christmas do the rounds, so it has made me very careful when people have D or V or both now!

mrsT I am having a lumpectomy with wire markers being placed beforehand too, plus all my lymph nodes from under my arm are going. I am mostly worried about how painful it will be afterwards (under my arm more so than boob)

keepcalm mine hadn't changed after my first couple of chemo's on an US scan. When I had a second US after the last chemo (7 rounds) it wasn't visible. The lady doing the scan said some shrink quickly and then don't change much and some seem to stay the same for a while and then shrink, the first guy scanning said it was good mine hadn't grown when I was disappointed there was no change too btw.

Anyway, I had better attempt sleep, have a good night everyone x

Just been reading the threads as I'm waiting on a triple assessment just after Christmas. Is it too soon to be posting here?

Don't really want to tell people about the referral, as it's Christmas, etc and may turn out to be nothing to worry about.

newherebegentle welcome although sorry you find yourself here.
ranout the best eyebrow pencil I found is the GOSH one from Superdrug (eyeliner is also fab), it's waterproof but in ordinary p xxxencil

Noodles

Good luck with the op Noodles. Let us know how you are getting on/recovering when you feel up to it. I’m going to be having a mastectomy or lumpectomy (Apparently it is up to me to choose!) and all lymph nodes removed from left side in Jan. so will be interested to hear how you find the op & recovery

Xx

Best of luck today Noodles. Let us know how you get in and don't forget to take your charger so you can update us all

Welcome whatsupp no it's never too early to post here. Have you told anybody in real life? We'll keep you company until your results but hopefully you won't need to be here for long

Thanks, mrsT I was told by my surgeon that for me, as long as I also have radiotherapy if having a lumpectomy then there was no benefit to having a mastectomy. He recommended a breast conserving op when I queried why not have a mastectomy, so am following his advice!

Good luck purple with your stents/tubes. That doesn't sound very pleasant, I hope that you get called in quickly (and you are able to have decent pain relief for the procedure)

Off to make a bit of toast in a mo as no food allowed after 7:15am and I will be ravenous by the time I have my op at 2pm if not! Not really hungry now, but had better eat a bit of something...
Have a good day, I hope everyone is feeling as well as possible today and not too many side effects from chemo.

Thanks Noodles. I should have a meeting with the oncologist next week when I have chemo so want to ask her which op she thinks will be best for me.

Enjoy your toast!

Xx

mrst I had surgery a few weeks ago. Initially it was suggested I have a lumpectomy on one side and a mastectomy on the other. I was completely unprepared for the idea of a mastectomy and I cried when she said it. She examined me and said because I had quite a lot of breast tissue that she would do a lumpectomy. When I got home I then worried that I might be making a mistake but spoke to the breast cancer nurse who reassured me that as noodles says a lumpectomy and radiotherapy would have the same result. And I need radiotherapy on the other side anyway so I was happy with that. I suppose it all depends on how much breast tissue needs to be removed.
Hope all goes well today noodles

Thanks Gin. I think because I was told at the beginning I would need a mastectomy I kind of had reverse shock when last time the surgeon said I’d responded well to the treatment and he could now do lumpectomy. The more I think about it the more it would be great if I could preserve the breast but I need to hear what the oncologist thinks. At my hospital the surgeon and oncologist seem to work a bit separately. After he’s seen me the surgeon writes a letter to the oncologist and I’m sent a copy!

I think I am going to give the breast care nurse a call and check that I definitely will be seeing the lead oncologist next week on chemo day.

Xx

I’ve been told I will be having radiotherapy after the op.

Good luck today @noodles44 We're all sending positive vibes your way 

Hello @Waddsup12 sorry to find you here but these ladies are ace and you're very welcome. The waiting is the worst part to be honest.

I slept from 9.30pm till 8am. This is Unheard of for me. I usually get 5 - 6hrs at most. The cold has me absolutely floored 😞

Oh I thought you were going to say you woke up feeling refreshed with all that sleep Keepcalm. Have you had your flu jab? Plenty of rest (if you can) and loads of lemsips. Although gallons of sugary tea is what I have when I have a cold

Just a quick reminder to anyone who has been recently diagnosed or is in the future, you get a 5 year exemption certificate so you don't need to pay for any prescriptions. It isn't means tested so everyone should get one

@purpleunicorns whole family of flu jabs all done thankfully!

Sending noodles lots of love and good wishes for today. Toast sounds like a plan.

Need to give my head a wobble here! I’ve been negotiating with my team not getting scan results until the new year as anxiety levels are stupid and it won’t actually change my plans for my last round of chemo anyway. Got a call from CSN just now to say that’s fine, will just have the usual pre chemo checks and no mention of scans. Great. Except now I’m thinking that if my scans looked ok she’d just have said nothing to worry about! Does that make any sense? No coffee yet today so potentially not!

Namechange Apologies if this is inappropriate, but... you're going to worry and imagine the worst anyway, so it might be better to know what you're really dealing with. And there will be a plan to deal with whatever needs to be dealt with....

No not inappropriate at all I know exactly what you mean! My issue is that I’m having two scans 6 weeks (2chemo rounds) apart, so the first scan won’t lead to a plan, plus family are all busy so can’t come up to help me. I will face the music once the two comparison scans are in, but I can’t face it when I won’t actually lead to any change- especially pre Christmas when I’m all emotional.

Hmm seeing that written down it looks like a whole load of excuses!

I can accompany you or babysit your children if that helps! I'm in West Berks...

Just a quick meaasage to Noodles and G&T. Glad you both posted your info this morning because had a useful conversation with breast care nurse and she was very clear that Surgeon is leading my treatment and said they will have a multi disciplinary meeting after my MRI this week to which the oncologist video links in. So if surgeon does say lumpectomy would be equally good as mastectomy for me that’s because they’ve all seen the scans etc and agreed.

So feeling quite positive about all that. Don’t want to get my hopes up too much but it would be great if they think a lumpectomy will be as good as mastectomy for me. I know the lymph nodes have to go.

Thanks again. Sometimes it’s the info from other people that prompts me to ask more questions.