Cancer Support Thread #81 Newbies welcome

[TopOfTheCliff]

This is a kind and friendly place for those with cancer or those worried they have cancer (or who used to have cancer) to hang out.
Please introduce yourselves and chat away. No issues are too big or small here.
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Yes they are 5.

My call with a date for my appointment came 2 days later than the letter said it would, I think (like all the NHS) they are really stretched.

5 is a lovely age.

I am not sure how long mine will take, in theory 2 weeks, but I may check that is the case as I could go private though not sure it will be quicker.

Quinin So sorry to hear your news and hope you can keep going for as long as possible.

@quinin the fat lady has not sung just yet! From here on you do whatever feels right for you and we know that individuals are not statistics. I suspect the 'liberation' is the feeling of being chemo-free - there is apart of me that would just like to let go of all that - whatever.

Thanks for the ideas for activities @HauntedDishcloth. Playmobil is a great idea as my daughter loves it. Need to invest in some more. I like the idea of the book you mentioned @Doofas.
@Starmer, thanks for saying hello & I’m so glad things are going well for you & you are back at work.
@Bob74, I manage to function ok most of the time although the emotional side of things has caught up with me recently. It’s such a rollercoaster. But it’s very common to feel completely lost & overwhelmed.

@quinin, I am so sorry to hear your news. Like you I never ask for time frames. And as @Acinonyx2 says it’s not over yet. I can see how it would be liberating to stop treatment. It’s so draining. Sending lots of love & healing energy.

@quinin I'm so sorry to read about your results

@quinin I had a feeling of calm when I had my breast cancer diagnosis.

I hope they come up with a plan that you can feel comfortable with.

Great meeting tonight with my surgeon, booked in for the margin clearance on 1st December and should be in and out as a day case.
Pre-op on 15th November.
I was determined to go and see Sleaford Mods on 27th November and now I can.

quinin so sorry to hear your news.

Twobignoisyboys chemo before surgery sounds like you have her+ breast cancer (same as me). I think the best advice i can give is to get a port (which I had) or a picc line fitted. It saves having to be cannulated repeatedly and saves your veins. I have awful veins (always a battle to get a cannula in and always involved multiple attempts - which was extremely stressful for everyone involved!) - had chemo #1 by cannula (and pretty much destroyed that vein) and had a port fitted! It saved such a lot ofpain and anxiety (although I was a bit squeamish about it!). I'd definitely discuss it with your team.

Other advice I would give is to have a hospital bag packed just incase you need to go in. I learned that to my cost wheni had to go in to hospital unexpectedly and packed in a bit of a panic! Notebook and pen, chargers and extension lead are a must!

So sorry for everyone that we are on here! Thank you for the support - @allIlovealido I appreciate your response, you are spot on. x

I'm ER/PR and HER2+ and had surgery first (lumpectomy and lymph nodes in August) and now having chemo. So my treatment is different. I think because my cancer was lobular it doesn't respond to chemo (45% shrinkage of tumour) so the tumour was removed first.

However it was discovered that my cancer was lobular and ductal after surgery.

It does amaze me how everyone's treatment is tailored to them.

Just thought I’d pop on here and see if anyone has joined the cancer Covid-19 study? covidcancersurvey.uk

I’m currently waiting for my results!

@quinin so sorry to hear your news.

I have my appointment. It is tomorrow. Now worrying if that means anything as I only went to my doctor yesterday.

@pinguwozpushed that's amazingly good service!

As I understand it a two week referral is the top. As in there isn't a next day referral for worse cases or anything. You must be fortunate to live somewhere with very low wait times

That's good pingu I would imagine they had a cancellation due to covid though my mind would be going into overdrive too. But good to get it over with. I am wondering how long will take here, want to phone hospital but they don't seem to advertise breast clinic number.

Sorry to hear your news @quinin. Sending love x

@quinin - ohh thats a bummer to get poor scan results. But as you say, there is something of relief to it as well. The shitty penny has finally dropped and you can go forward from the point that the worst has happened and live free. And I'm all for woo - I had a dream last year where a celebrity who had recently passed of cancer was holding my hand and I asked if it was bad, they said no, not at all, and then I asked if they would let me know when it was time and they said of course. I woke up then but that was the most reassuring, mentally stabilising dream I think I've ever had! So I hold it close still, even if its a bit woo.

Finally got my breast/axillary clearance/recon surgical date for end of the month, though unless I dig up some 20 yr old surgical notes on a prior breast reduction, plastics cant reduce the left side the half cup I would like to match the new boob they will construct. So long as both match I think Ill be happy either way, though a little smaller would have been nice!

Hello everyone, I'm still here, reading away quietly and doing okay. I've not had time to read to the end of the whole thread but wanted to reply to
@thesandwich : you sound a lot like me, I'm just a month or so ahead of you in my treatment. Also Er+Pr+Her2- and am currently recovering (well) from a flap reconstruction. I agree regarding the endless waits to find out what happens next... At the moment I have most of my appointments thrown at me with days notice (not really complaining, very grateful for appointments at a time when our hospital is shutting down some services again). Had a check-up last Monday, all good, now they have passed me to the Radiotherapy, first appointment next Monday.

I'm 51 and peri, so am going to be taking Tamoxifen for the foreseeable future.

I hope you're doing okay and mending well.

Thanks for all your kind messages. It's really nice to be able to come to a place where people get it. I'm being bombarded with clinical trial and immunological therapies info but It's quality over quantity for me moving forwards, I'll not budge on that I don't think. My body is tired and I just want to feel normal for a bit. I had a great swim and steam in the gym yesterday, chatted to a nice random about life & the universe, was lovely. I feel completely fine for now with good energy.

@HerbalRefreshment that's a great dream with such a clear message! I love those. I had a vivid dream this week telling me diet alone will not heal my cancer and to stop focusing on it, almost like getting told offI've had premonition dreams in the past that have come true. All V odd.

@Acinonyx2 yes I think there is something in now being able to say no thank you to treatment without the guilt/anxiety of doing the wrong thing.

@MrsPnut that's interesting. I still feel calm which I'm grateful for. I'm Impressed by your social diary. Hope op has a success outcome.

@Ilovealido have you told your parents? Im really dreading this.

I've been reading & listening to stage 4 survivor stories today. It's so impressive what people have been able to come back from. It's really very inspiring.

@thereisonlyoneofme - great news on your scan.

@Silkieschickens @mrshodgeheg @pinguwozpushed
and other people waiting for appointments /diagnoses: hope you get the answer you wanted soon.
pingu that speed probably means nothing, we've been having weekend appointments (and really early/late ones etc) here because they are working hard trying to deal with the backlog. Maybe they had a cancellation.

For some positive news: a colleague had an urgent referral to the breast clinic recently and was so worried (family history too) and her lump turned out to be something harmless. Relief all round.

@quinin So sorry to hear your news. I hope you find a plan that works for you and your family. I love your "quality over quantity" attitude.

As for me, I'm doing fine, and feel a bit like a 'fraud', especially compared to the things some of you here have to deal with every day.
Radiotherapy coming up soon, but no chemo, so I got off lightly this time! And am very very grateful. Regarding the 'fraud' reference above: people's reaction when I tell them what is happening to me gets me down more than when I got my diagnosis. I know that cancer is a wide spectrum, and some people suffer and die, but I have every reason to be optimistic in my case. The concern and worry, the reluctance to speak to me / ask about it (I'm not British so may be a bit more direct than some!). I don't mind who knows, and I don't need wrapping in cotton wool. Yes it can be very serious and life-limiting but really right now I am fine (ok, nearly fine). I'm even considering starting gentle jogs again, I am cycling, and working (from home) as normal.

Please, I don't want to minimise what others here are experiencing. I'm just at the other end of a spectrum, and very grateful for that. Of course I'm now in the club for the long haul, totally aware that the cancer can return any time even if I am clear of it now. Hence the Tamoxifen and regular checks.

@Quinin sending you love and peace as you process your news.

I am in Cornwall with very old loved friends in a cottage on the cliffs watching the clouds race over the sea. It is spectacular! I can feel my soul healing. I will try to post a picture before heading out to go swimming.

Love to all
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Good news for me - the lump is benign. I got the fast appointment due to a cancellation. All of the staff were lovely.

Thinking of you @Silkieschickens and @mrshodgeheg.

@TopOfTheCliff that looks spectacular.

Good luck to all.

Glad you got good news Pingu
Thanks Newly

That's great news @pinguwozpushed

@quinin, your swim & steam sound wonderful. I agree that it’s so good to come to a place where people get it. My mum & dad know everything as they live close by & we see them so much. I have found the whole process as far as they are concerned very hard though. I guess ultimately we are their children & they worry.
@TopOfTheCliff- I love Cornwall, looks amazing.
Good news @pinguwozpushed, must be a relief.
Hope everyone has a good weekend.

Hi everybody, I hope everyone has found something to smile at this weekend, even if just once.

I'm starting my journey and have been advised to do my research into the best colorectal surgeons/oncology team I can find.... does anyone have any idea how I might go about this please? I literally don't have a clue where to start, short of putting that phrase into google (!)

Any help or pointing in the right direction would be much appreciated.

Thank you.