Cancer support thread #76 - newbies welcome!

[Bloodybridget]

Here's the next thread for anyone at any stage of cancer, from noticing a possibly warning sign, through tests and scans, diagnosis, treatment and beyond. Come on in for advice, sympathy and support.
The last thread is here.

If you've been on a previous thread, please come and say hello and introduce yourself!

If you are a relative or friend of someone with cancer and looking for support, please look for other threads; there is one in Life-limiting illness for partners - link to latest. This one is for cancer patients ourselves.

Thanks @ivampire will look I into it.

@Bloodybridget I'm still managing mouth problems. Difflam (supposedly 4 times a day but 2 in reality) helps with pain. Chlorhexidine mouthwash can also be used with difflam - but you'll basically be mouthwashing constantly . Also still using Oralieve at night to stop mouth drying too much (my mouth seems to get electric shock feeling if becomes too dry). Tastebuds also still very swollen - but the hospital don't seem concerned anymore.

Thanks @InOtterNews, I will try the gel first and then other options. I have a phone oncology appointment on Wednesday so will ask them too. Sorry to hear you are still having a lot of problems.

Bloodybridget I'll second the difflam mouthwash your oncology team will prescribe it xx

Hi newbie here :)

Just after a bit of advice about returning to work. I have been off sick for the past 11 months after been diagnosed with thyroid cancer. I know that it seems quite a long time off to have off work but I haven't coped well with my diagnosis.
So I'm back to work this week and I feel so anxious and I'm teary and now I'm thinking maybe I'm just not ready, but if I don't feel ready now when will I. I feel so scared I won't be able to cope, my job is stressful and fast paced.
So just wondering for those of you who have gone back to work how was it for you?

Hello.. bit of a fraud here, but I had a hysteroscopy and biopsy today due to crazy prolonged bleeding and I’m a bit worried now, weirdly after waiting since January for this. Dunno, have a bit of a bad feeling. It’s annoying as I’ve been pretty cavalier til now! I’m fifty one, and can’t share with DP as he doesn’t do well with these things. His late wife had cancer and he struggles

Hi I'm a newbie.
Today I went for my results from my biopsy told that I have Ductal cancer. Not taken it in yet.
My nurse is phoning me tomorrow to go over everything again. Hopefully they have caught it early
this was only picked up from my mammogram. I'm having a lumpectomy in the new year.

After reading this thread I am feeling confident. You are all very brave talking about your experiences.

@good evening all. @Bloodybridget Thanks for good wishes. Sorry you're dealing with mouth ulcers. Hope you get relief soon. @InOtterNews jealous of your massage. Could do with one. 😂. @TopOfTheCliff. Good to hear ankle improving. How long will you be in hospital for. Wishing you good luck

Hi to lol the newcomers. Sorry you're here but the company is good.

The originals will know I've been on the long windy road to my diagnosis of rectal cancer and tomorrow is my initial oncology appt. have prepared as much as I can but getting nervous.

Hope everyone has a peaceful night. Xxx

Oh what a lovely day I had!
First I went to Fracture clinic and as my ankle wound has finally healed I was discharged. Miraculously I can now walk a few steps too.
To celebrate we went to a Christmas tree farm and met friends for coffee and saw reindeer and bought a tree. Such giddy excitement after being cooped up for weeks feeling like death and unable to move! I am so grateful just to feel almost normal.
@Bloodybridget I am sure your DP will be hopping about happily in a couple of weeks. Another vote for Difflam here for your poor mouth.
I am hoping my op is just a day case but if I do have to stay in overnight I shall quite enjoy the chance to sample the food as I’m having my op in the private hospital on the NHS thanks to Covid.

Welcome @WouldBeGood and @Noidea2114. This is a friendly place to hang out while waiting endlessly for things to happen. The rule is Don’t Google as it just scares you. You will feel much better when you have a plan of action.
@gillmoregirl hope it goes okay with oncology. Thinking of you.

Best wishes to everybody.

Top

@user984309 sorry I meant to,reply to you.
First have you spoken to HR about a phased return? Is the job big enough to have an Occupational Health expert as they should make a plan with you to ease you in gently. Secondly it might be worth ringing Macmillan for some counselling and advice about your recovery. They are said to be very helpful and you sound quite anxious about it all.
Best wishes and don’t rush things it takes how long it takesa!
I’ve decided as I am already ancient and have a pension I can claim that I am going to just stop working and stay home from now on. I am very lucky to have the choice. If I was younger I would definitely go for part time hours.

@gilmoregirl How has your recovery been and how is your dd? Thinking of you tomorrow and hoping your onc is as lovely as mine have been.
@Bloodybridget How's the neuropathy? Hoping it was just a blip and you've got your confidence back for driving. At least in London there are lots of buses. Can you have the vaccine so you can use them when we're allowed?
@Starmer - have you heard any more about your trial? What's it about? My onc told me that they have discovered that the infusion/capecitabine combo works just as well with fewer cycles but they hadn't done one for capecitabine on its own yet. It'd be useful to know because I ended up doing only 4 out of the 6 because of covid. I'm pleased in a way because I didn't have any problems with my feet and the last thing I need at my age is something that affects my mobility!
@BitOfFun How did the MRI go? Hope your flamingos are all lit up and twinkly for the season.

Best wishes to everyone else and welcome to the newbies.

Can I join you please? Just in middle of diagnosis and struggling with being strong for family.
Two tumours (bowel and liver) were found on CT scan yesterday (my 51st birthday!) along with dodgy bloods so strongly suspected cancer. Waiting for more scans and biopsy for confirmation.
Any advice would be very welcome, thank you

@user984309 I agree with @TopOfTheCliff that you need to speak to HR. No one (especially you!) should expect you to be able to go from being off sick to performing at 100%

When I went back to work I started at a few hours a day, a few days a week, and gradually built up. I also did a slightly different role for a couple of months So that it wasn’t so pressured. I’m lucky that I work for a large organisation who made me go see an occupational health doctor before I came through the office door!

I think people under-estimate how much of cancer is psychological as well as physical, so please don’t expect too much of yourself, and reach out to someone in your organisation. You will get there, but try to give yourself time

@ChocolateandCheese Sorry you're in this position. The waiting for results is the most difficult part. If you are struggling please speak to your GP. It's hard to be strong for everyone else. Believe me I know. Xx

@Thymeout Thank you for asking. I'm recovering well. Stoma site still tender but all things considered I'm ok. DD has picked up I think because I'm ok she is taking lead from me. DH struggling bit more and I'm having to bolster him. My patience can run thin at times though lol. That's the gift of surgical menopause which has thrusted me speedily into restless nights and night time hot flashes. The joy 😂

After today I'll have plan of action so that should help. My oncologist is supposed to be really lovely and I'm secretly glad it's a female doctor. I refuse to let this bastard cancer invade my mind as well as my body.

@TopOfTheCliff. Glad you had good day and mobility getting better.

@Bloodybridget. Hope your ulcers heal soon.

Thinking of everyone here. Sending good wishes to @Starmer @BitOfFun @InOtterNews @iVampire @ElaineMarieBenes @LucyWarlowsRightHand.

Hi all, just a quick check-in.

I've got some work to do today which is great - I'm actually feeling kinda ok and appreciate the mental stimulation. Of course I'd rather not do it but I know it's good for me!

Welcome to the newbies, though of course I'm sorry you're here. @user984309 it will take you a while to get back into the swing of things, I'm sure. I think you need to look at it more as 'starting a new job', it takes time to learn the ropes and get up to speed. I also agree that a phased return would be the way to go. You'll be wiped out otherwise.

I've got just a few more days to go and then I'm done with chemo. I'm happy about that. I'm hoping to take some time after that to gradually get my energy back (I'm thinking this will take months or years, there's no rush) and figure out how I want to live from now on. I'm not planning any major changes, but I'm also not prepared to go back to everyday life except now being afraid of cancer returning. I want to make this the catalyst for a better life.

Details TBC

@gillmoregirl everyone's different but I think (so far at least) that I've come through this relatively mentally unscathed. Things could be different once treatment finishes of course. But in general I've found it physically quite difficult at times, but mentally not such a challenge. I keep waiting for the other shoe to drop but it's been nearly 5 months so far...

Morning all, thanks for all kind messages re mouth. It's getting worse so will def ask oncologist about all possible remedies. @Thymeout I haven't driven since Monday, I do still feel anxious about it, and wouldn't take public transport more than absolutely necessary. Has anyone been told anything about vaccines for cancer patients? I will ask about that too.
Hello and welcome to newbies @Noidea2114, @user184309' @WouldBeGood and @ChocolateandCheese. Chocolate you're at a horrible stage in the process now, I'm sorry. Hope you get appointments for further investigations soon.
User not surprised you are anxious about the return to work and I hope your company can give you appropriate support.
Noidea2114 sorry about your diagnosis, hope the phone call with the nurse is useful today.
WouldBeGood that's an awful long time to wait for the hysteroscopy. Hope you get results very soon, and crossing fingers it's not bad news.
@TopOfTheCliff how lovely that you had a good day, reindeer, I'm so envious! And it's great news that you've been discharged re ankle. It would be brilliant if you got out of hospital the same day, although it wouldn't give you much opportunity to sample the cuisine!
@LucyWarlowsRightHand won't it be great to finish chemo! Glad to hear you are doing OK. Is it freezing in Amsterdam?
@gillmoregirl hope your oncologist is as lovely as you expect. Sending v good wishes to everyone here.
As well as the mouth ulcers I had horrible stomach pains yesterday evening, I think probably just wind from having beans on toast for lunch but I was quite scared. I'm just hating the thought of four or five more months of chemo.

@user184309 there is an organisation called Working with Cancer which can help people in your situation - they offer a range of services which include 1-1 coaching sessions. Do have a look.

@gilmoregirl sending best wishes back now you’ve had surgery and are starting chemo soon. I just have 3 more (weekly) chemo sessions to go and so have just been lurking this thread and keeping my head down and focusing on the finish line!

Sorry to see so many new names but at least none of us are alone on here.

Great check-in @lucywarlowsrighthand and i’ll toast to a better future for everyone!

Still stuck overseas but only have 177 days left before I’m hoping to be heading home!

And @Bloodybridget hoping you get some relief soon (and five months flies by)

Hello, so pleased to have found you. Waiting on results and in tears all the time. Terrified

Welcome @Tean791, please talk to us - we are all at different stages of the journey and we would love to listen rather than you feeling alone and tearful.

I spent today at the hospital, thought I was going for a planning CT (which I had) but also had a consultation with the breast surgeon and a visit to the chemo nurses along with a zoladex injection.

I start next Wednesday with radiotherapy and chemotherapy as well as an appointment with the wellness consultant. It’s my bloody luck that my appointments are at 10am until school breaks up then at 9:30am including a few weekend days because of Christmas.

Thank you. I so scared and feel so weak and pathetic

Bloodybridget thank you. The nurse phoned me she seems very nice. But I hate talking on the phone.
I found it difficult to relax with someone until I know them better. This part is going to be hard for me as I'm quite a private person.
Discussing my feelings etc.
My pre op is on Thursday. Katy will phone next week hopefully will talk me through the what is happening next
and maybe a date for my operation.

@Tean791 this is a lovely group. Tell us as much as you're comfortable with and someone might be able to help.

Thank you all. I've had a lumpectomy and breast reduction. My iron levels are really low so I'm being sent for tests endoscopy etc. I've convinced myself the cancer is everywhere and I'm just crying all the time

Welcome to @Noidea2114, @ChocolateandCheese and @WouldBeGood. As others have said, the waiting is the hardest bit. Hoping results and plans come soon for you. And hugs to you @Tean791, do share if you think it will help.

I hope your mouth is less sore @Bloodybridget. Difflam is wonderful stuff and you can buy over the counter. I have a stockpile as I got a sore mouth early on, ordered it online from Superdrug, who then sent me 4 bottles (ordered 2) and I had bought another bottle in the meantime as the order was delayed ..... Let me know if you want some posted, as - typically - my sore mouth then improved and hasn't been a problem since!

Hello to @Thymeout. Study is about the protective effect of aspirin. I can dig out details if you like, as it's a big study and you might want to join. It's over 5 years and you are allocated to either 150mg, 300mg or placebo. The only question that I need to ask is that I thought there was definite evidence that aspirin was effective, so why the study..... keep on forgetting to ask oncologist, as I can't start until past chemo anyway.

Hope the oncology appointment went well @gillmoregirl and you have a plan. And good luck for surgery @TopOfTheCliff. So glad the ankle has finally healed, and that you seem cheery. I did feel a bit jealous when I read your post and you had been to a cafe with a friend. Tier 3 here, and had forgotten such things were even possible!!

And hello to @lucywarlowsrighthand. I love your post. I too am going to be a new woman come January 2021 and the end of chemo.....

Thinking of everyone else xx