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

I'm not sure it's ever that busy...I know I have waited in excess of three weeks before for any response at all. (My DH had a stem cell transplant for a rare blood cancer - almost 2 years ago now, but he has been very slow to respond so the possibility of (untreatable) relapse has always been high. Anyway, he's doing ok now - we are lucky.

Yes, probably better if people start their own threads...also "life limiting illness" isn't always cancer, so the "specialist" support can be a bit thin - no one has the foggiest what SCT involves!

I really do wish you all the very best. x

KBG

I looked at the sugar candy ones on bravissimo. They do look like they would be very comfy but unfortunately don’t do any in my size.

Keep Calm. I think you might have your surgery a bit before me.. hopefully we can recover together. Mine is scheduled for 14/01.

Fuzzy ah, yes I can see that life limiting conditions aren’t necessarily cancer so what replies you get won’t necessarily be very well informed.

Really glad DH is doing well. It still hangs over you though I imagine, however hard you try to shove it towards the back of your brain.

Spot on name.
Yes, it hangs over us - we still have to schlep off to the hospital (miles away) every few weeks for blood tests. And extra departments picked up through the fall out. And that's not mentioning the psychological damage it has all done.

But none of it as immediate as the shit you're going through.

And I really don't want to hijack your thread. So thank you and goodnight! x

@Mrstraveller I don't have a date as yet. The surgeon called me in on Christmas Eve to tell me it would be as soon as they can get me booked in. Some other poor soul will be getting bumped to later as I'm now a priority patient

Although we have a funeral on the 4th and DH has an interview on the 16th so am guessing either of those dates

keepcalm, mrs - did doctors say why they won’t remove the good breast? Mine have said they will but they don’t recommend it as it doesn’t increase survival

I’m also having mastectomy and lymph node removal but I still have 3 months of chemo to go plus I’ll probably have my radiotherapy pre surgery so surgery won’t be for a while yet. mrs my herceptin will also be every 3 weeks for a year so after chemo I’ll probably have the injections too.
Hope everyone had a fab Christmas. All ok pandora? Xx

@Simmi1 they said they refuse to remove healthy tissue and that ironically the healthy breast is the one that has increased Occurrence of issues/infections etc with healing....

I'm not allowed a reconstruction just now as my BMI is too high and ironically when they reassess again in a years time the plastic surgeons demand it to be even lower......

Considering my BMI will plummet with a double mastectomy.....

keepcalm - very odd! Most of the headless pictures the plastic surgeon showed me were of quite overweight older women - the tummy scars looked bad but I had to keep reminding myself they’ll mostly be hidden.
I also saw some photos of implants she’s done but she kept going on about how she doesn’t recommend them (she’s a plastic surgeon??). My BMI is borderline normal/overweight but they seem ok with that and are very keen to do the DIEP surgery on me!

@KnickerBockerGlooooory I've found a site called Miss Mary which gets excellent reviews for bras for those of us with large norks. I shall order some non wired ones and they have two prosthetic options too.

Simply Be also have some Royce ones just now

@FuzzyCustard have you tried Facebook groups for support? If your husband is under 50 try the Shine Plus Ones group, although I don’t know how active it is. There might also be specific groups for blood cancers? Plus Macmillan has a carers group on its web forum which is not specific to a type of cancer.

Simm

I think it’s a question a lot of women ask but It seems quite general in the NHS that they won’t remove the healthy breast unless there are special circumstances like strong genetic predictor or something. My original letter said “delayed reconstruction”. I don’t know how long it’s delayed for but I don’t mind as I want the time to think whether I even want reconstruction. At the moment I am thinking not.

Thanks for the recommendation keep!
I've always been borderline obese according to the surgery scales - despite being a size 10-12. Interestingly I have lost 5lb and 4% body fat since my single mastectomy...

Ooh yes Shine is ace.

What is the thread etiquette on tagging/mentioning/messaging someone who hasn’t posted for a while. There is someone who is in my thoughts- is it best just to leave it as that and hope she comes back after a lovely family break?

Morning lacies

Hope we're l as good as we can be. @Namechangeforthiscancershit maybe DM them? They can always ignore if they don't feel up to it.

Fingers crossed I'm off for my last chemo just after lunch. I managed to fast again yesterday which was very hard, but I've fasted for all the others, so the will power kicked in!

Waves all round

Morning,

I hope everyone had a good Christmas Day & Boxing Day. Mine have been on the whole good. My ex came round for a chunk of Christmas Day which marred it a bit for me. It was better than the kids having a hurried introduction to his new girlfriend and spending time there. they have now gone on a 3 week trip to Oz and I doubt the kids will even notice his absence as in his 'recovery' from alcohol issues, he has hardly seen them. He claims conveniently to have been too ill and it is too upsetting for him (but he hasn't been too ill to start a new relationship) whilst also blaming himself for me having breast cancer due to the stress he has caused me. Poor him! I've struggled a bit with the unfairness of everything and the fact he can just jet off on a whim, whilst I am at home with my drain, still doing herceptin with radio to follow, whilst doing all the childcare of a nearly 5 yo & 8yo. I imagine when his best behaviour slips, as the leopard hasn't changed his spots, the new relationship will go (if she has any sense) but he is very convincing with his story and I think he believes his own version now. Anyway pity party over!! Christmas seems to make everything more emotive... I am lucky to have had my Mum & Dad here and my brother & his wife fly in again 2mo for a week, so a few fun things planned before Mum & Dad go home.

Glad you got out of hospital purple but sorry you are in so much pain. I hope they get you sorted when you go back today.

Leslie The foot warmer sounds the perfect thing for a day on the sofa with Netflix. I have a pair of ancient ugg slippers, that I can only wear when it is absolutely freezing as my feet get so hot! I have ordered a pair of velvet pom-pom ones in the Boden sale for warmer days that look nice (as well as 2 dresses that slipped into my basket!)

mrsT & keepcalm I have just worn normal clothes since the op, although have avoided tight tops as baggier ones are easier to navigate. It is just a case of gingerly putting the sore side in first. I do have a couple of pairs of yoga bottoms (that I bought when I became ill as thought they would be comfiest to recuperate in) which I have worn frequently. Hence the dress purchases as I am beginning to feel like I need to make a bit more effort & am hoping they will give me a boost too.

Good news in that the lumps/rash on my face doesn't look to be shingles, still no idea what it is, it feels like bruising and is now a bit weepy/scabby in a few places. One visiting nurse gave me something to put on it which seems to have helped a bit and it definitely doesn't look quite as bad as it did (thankfully!!)

I hope everyone has as good a day as possible. I was hoping my drain would come out today as it has been in over 2 weeks and is feeling uncomfortable as everything is healing around it. I drained 90ml yest and they don't plan to remove it until it is less than 50ml being drained. I have just checked & I am on 70ml now....

@KnickerBockerGlooooory I'm very definitely obese according to my BMI which is ironic considering the weight/size of my breasts and how much I work/am on my feet. Am annoyed at not sticking in with SW last year and my 10km Walks. Maybe now am working less I can think about me a little more

@noodles44 am sorry but he sounds like an absolute wanker, am glad he's your 'ex'!

And yay for no shingles, they're an absolute horror

Me too keepcalm! It is making me feel like a horrible person though because I am jealous I think. Not that I want to be with him, but that he has a new partner, amazingly has his health and does as he pleases (whilst claiming to love the kids and miss them so much to the point of tears whenever he sees them)

I was due to have herceptin today, rang the chemo ward as the SASH nurses are still coming out and also advised I had a rash, so they have postponed me & told me to get the rash checked at the GP's ASAP, so a, off to the doctors this am now instead...

Morning...

I hope you all had a peaceful Christmas. My thoughts have been with you all over the last few weeks.

I know it's late but such a lovely thoughtful bunch of flowers from MNHQ Leslie

I got my phone call last Friday and have an appointment to see gyny oncologist next Thursday.

TQ my CA125 count was 75 a month ago and last test a week ago was 54 apparently no infection detected which is why my gp has referred me under 2 week rule.

Feeling pretty shit atm, feel tired, nauseas and as well as almost constant lower back pain have had sharp pains in my stomach which had me bending over in pain yesterday it's like someone is stabbing me with sharp pins. Not sure if I should call gp for advice or just suck it up and wait to see consultant. Getting to see gp is a battle and I seriously can't be arsed. Don't want to end up in A&E again though. Just don't have a clue what's wrong with me apart from something isn't right.

Noodles Obviously your ex for very good reasons. Enjoy your family time with your db.

I actually have a stack of orange and strawberry roses left if there's any takers. I've only scoffed the fudge ones.

Fuzzy sorry to hear nobody has replied, I always point people to that thread as I thought the more people know about it the more people will post on it. The Shine group on Facebook is really good so hopefully their plus one group could help you

Good luck with your chemo Ranout and well done for fasting on Boxing Day of all days

Noodles your DC will see him for what he is one day and they'll appreciate you all the more for it and everything you do for them. I'm glad you've got family to support you. Hopefully your drain calms down soon and you can get it out. It must be so awkward and uncomfortable

I'm back in hospital and never thought I'd be happy to say that they're checking my bloods and kidneys and giving me extra fluids to help my kidney function. I should be back home tomorrow with stronger pain killers then I can hopefully make a start on sorting the mountain of presents out and get my house back to normal

Glad you are back in hospital and getting sorted purple make sure when you get home you don't do too much running around though, sit down, put your feet up and delegate jobs where possible

Well I am just back from the doc's and I do have shingles after all....
I now have a week of tablets (5 huge ones a day!!) and eye ointment to take. Hopefully it is quite a mild form as I don't have any rash on my actual eyeball. It is amazing how itchy it suddenly feels now I know what it is though! The GP said probably susceptible as my body is stressed following chemo/op, I updated the chemo nurse who said even though you are not supposed to get shingles from someone with chicken pox, anecdotally she has seen lots of patients over the years get shingles after their children have had chicken pox... Hopefully it will be gone soon as it really isn't a good look!!

Nooooo Noodles that is really NOT what you need is it? Will these tablets clear it up this week do they think?

Noooo noodles what a pita.
cally your CA doesn't sound significant. If it were in the hundreds or thousands ... Maybe. Mine was 500+.
Just had my three magic pills and now waiting to be released.
purple glad you are being taken care of