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General health

Cancer support thread #72 - come in, we're here for you

999 replies

Bloodybridget · 21/09/2019 09:48

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is here

Current members, please do introduce yourselves Smile

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Bloodybridget · 01/10/2019 12:17

Iputthescrew you are very welcome here, you are exactly in a position that the thread is aimed at. Everyone here would agree that waiting for tests/results/diagnosis is often the hardest part. And we all feel scared, anxious, depressed at times, but there's no alternative to going through it - or to quote from a tv programme I was watching last night, "when you're going through hell, keep going "!
Keep posting here, we will hold your hand.

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fedupntired · 01/10/2019 12:18

Well, I've been to the GP and she was lovely!
I've come out with a blood test form for a battery of tests. Which includes a B12 test.
Apparently this can cause jerks so that is reassuring!
But she has also referred me to neurology and to my surgeon for opinions.
I know the MDT meets on a Wednesday so I'll chase up with them a week on Thursday.
Thanks all for being here xx

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Iputthescrewinthetuna · 01/10/2019 12:42

Thank you so so much!
Mum, my sis and partner are all saying 'you will be fine' I probably will. The doubt is awful though. I have 3 children, youngest is 3.
I feel pathetic. I keep messing with the lump. I know I should leave it alone!

I know my family are just doing what I would do by saying its all ok. I just want to scream and say 'but what if I am not'

Gotta pull it together a bit! Thank you for being lovely and welcoming!

Are there any questions you wish you had asked when you were at the unknowing stage but didn't?

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WTF99 · 01/10/2019 13:17

Iput You poor thing. It's so horrible being where you are now. I think the main thing I would want to know in your position is when and how I was going to get the scan/biopsy results. I'm.guessing this will be from your GP. You can ask the person doing the scan/biopsy when the GP will gave the results available to them and then figure out if you will be making an appointment to see your GP.
Aside from asking the GP to speculate on what it might be, which probably isn't helpful, I don't think there's much you can ask until you have more info in front of you.
Chances are it's nothing serious, like most lumps and bumps. If it turns out to be something, you found it early which is a good thing, and they will deal with it, as will you. As a group we've had all manner of lumps and bumps and we are still all here dealing with it. Take heart lovely xx

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MustardScreams · 01/10/2019 13:18

@Iputthescrewinthetuna (love your username!) What you say about everyone saying it’ll be fine really resonates with me. I found my lump whilst breastfeeding so everyone, drs, nurses, family etc all said it was a blocked duct. If my grandma and mum hadn’t both had cancer I doubt I’d have been put on the 2 week protocol.

Sometimes you just want someone to say you know what? It might not be ok, and it’s ok to panic. The worst part for me was absolutely the waiting before diagnosis. Your brain runs away with itself, and because you don’t know what the outcome will be, you just think the absolute worst. It’s hideous.

I do hope it’s nothing. But you’ll feel better once you know either way.

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Bloodybridget · 01/10/2019 14:19

Yes absolutely agree with Mustard, everyone wants to tell you it will be fine, people were saying that to me even when I was 99% certain my growth was cancerous (from the way everything had swung into gear). And you do need to be able to express fears to at least one person who won't brush them away. Well, here we are, if there's no-one IRL!
fedup sounds like your GP is doing all the right things, crossing everything for you that they will come up with an answer that doesn't require any treatment.

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Trumpton · 01/10/2019 15:31

@WTF99

“ I hope I'm gonna be a new better me....but not quite the same...can't be after all this. And yes, I caught sight of myself in the mirror the other day with my blue scarred boob, ashen face, wibbly body and wild sparse hair and thought....yeah that's not your best look! But it will all get better wont it?! This isn't forever.”

EXACTLY ! WHAT HER UP THERE SAID !

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Brassica · 01/10/2019 17:13

Just a quick check in from me.

Iput, everyone else has said the right stuff. Being worried but not knowing if you should be is hard, and it doesn’t really help for people around you to minimise your fears. No doubt they’re doing it for good reasons and because they’re secretly worried too, but you do need to be heard. We’re all here to listen and nod along if you need it, and meanwhile hopefully you’ll get some answers soon.

Is your friend always so bloody brusque meercat?! That sounds hurtful and unnecessarily curt. I’d be thinking about spitting in her cocktail at some point during the week Grin. Hope the break is doing you good otherwise.

Welcome back, Ben, I wondered how you were getting on. I’m TNBC too but they found no mutation for me so I’m very sorry to hear you have all this worry and extra surgery. I guess as it’s preventative you should be able to ask for some respite before having the oopherectomy done, especially as you are feeling so battered. Totally get your comments about the person in the mirror too. It’s not a pretty transformation by cancer, but you will get back to being more like your old self, albeit changed - I’m sure you will be able to identify something positive to come out of it in the end. That sounds Pollyanna-ish and I don’t want to be annoying or patronising, but I do think in general life experiences give us something as well as testing us. But there is nothing wrong with finding it negative when it gives you pain and worry.

Sorry the armpit is still troublesome Trumpton. Hope the meeting with the nurse went well for Skap, and that your strength returns and bloods hold up over these next few days WTF so that you can tick off the last chemo.

I had a day with my work colleagues yesterday at a team building thing, and everyone was very nice and expressed their pleasure in seeing me etc so that was good. Definitely having finished chemo on Friday has given me a mental and physical boost because on day 3 I’d normally have been resting and feeling a bit weary, but I lasted all day and I to the evening too. It felt good.

Waves to anyone I missed out.

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BenWillbondsPants · 01/10/2019 17:27

@Brassica Thank you, it doesn't sound patronising at all, I totally get what you're saying. I kind of think I have a choice to either pick myself up and move on, or let cancer get the better of me and I'm not really prepared to do that!

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Iputthescrewinthetuna · 01/10/2019 17:39

You lot are so lovely! So my beautiful friend who has the mumps at the moment cheered me up. She knew exactly what I needed to hear. The words 'oh shit, thats not good, if its bad I'm here through every appointment or any time you need me to have kids, if its good news we will celebrate'
I understand why people will say 'you'll be fine' I would say the exact same thing.
I am here now cuddling my babies. Will be having some birthday cake soon. Will come back later to read the thread. I already feel like this thread will be my home for a while. Thanks

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meercat23 · 01/10/2019 17:52

Iputthescrew. ⭐️for your friend. Now that is just what you want to hear when you are waiting to find out what's what. Most lumps and bumps turn out to be harmless but that doesn't really help when it is your lump or bump or whatever and you are waiting to find out.

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Iputthescrewinthetuna · 01/10/2019 18:09

Oh she really is a star. No lies between us. A few years ago I was unwell due to a disease in womb. I knew I looked rough, everybody was saying how well I was doing. Her words when she saw me was 'well at least we don't need to get you a halloween costume eh? Will make a coffee but first I know those legs of yours haven't been shaved' she then shaved my legs and brushed my hair. Some people would say she was insensitive, I know she knew I was thinking the same and tried to help me feel a bit better.

I have had a few lumps, I think I am being sensitive to this because A, it is scary. B, I know somebody who had lump in exact same place, it was cancer, she is in remission now C, my cousin sadly passed away at just 28 years old leaving 2 children under 4 behind.

I know that these are not my experiences and my lumps may be just a cyst or a random growth of nothing.
If this has taught me anything...I am not invincible and I really need to look after myself!

I am so jumbled at the moment! This is not me, I feel so self absorbed! I am thinking about a whole process, a whole treatment when I haven't even had a diagnosis.

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Flyingarcher · 01/10/2019 18:14

Hi all. So....went to the onc yesterday and my osteopenia is worse and she's worried about my bones given I am only 55. So she has moved me onto tamoxifen rather than letrazole. Feel really wobbly about this because I know the letrazole side effects.

Feel like I've been carrying a virus for the last few weeks. Fatigue is huge and glands are up and down like a yoyo.

And then there is my big toe...bear with me. I noticed around June a black splodge running the length of my toe nail. Thought I must have bashed it as it just appeared. Anyway, a couple of weeks ago a post about subungsl melanoma appears on fb and I google ...and it looks like my toe. So back on the two week pathway. Oh joy.

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Skap · 01/10/2019 19:40

@Iputthescrewinthetuna welcome to the thread. I hope you won't be here long but if you are it's unique. I came on in July when I was diagnosed with breast cancer. Lots of people who have been through or going through treatment for different cancers. Some forums are a bit too full of uplifting memes and platitudes. Here there is nice chat and sad stuff but it feels more like talking to real people. As everyone else has said the wait is awful. Feel free to rant on here.

@meercat23 your "friend" is not just tactless but downright nasty. I would struggle to remain civil.

@BenWillbondsPants I'm sorry you have had so much to contend with.
@Brassica The work thing was timed well, I'm so glad you are feeling good.

I feel as though I've been through the mill today emotionally anyway. Three hours with the chemo nurse talking me through all the scary stuff (some of which I know from you lot). I start on Tuesday which is before my echo but they might delay the herceptin until week 2. So every Tuesday for 12 weeks. Plus a round trip to the hospital every Monday for bloods. My GP rang me last night to say I have a chest infection and so I am on ABs. I have a cold.
I spent literally all afternoon on the phone chasing appointments, changing them. Cardiology, physio, Scan people, wig people etc.
Then I rang my lovely friend who is coming wig shopping with me and blubbed. Bizarrely the cold cap thing has upset me the most. I signed the consent to do it. And yet I really, really don't want to. I feel as though there is an expectation that I should try it even though no- one has actually said it. Going to eat ice cream now.

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SnowsInWater · 01/10/2019 23:13

Skap Seriously, if you don't want to do the cold cap just don't do it. Sod what other people think/expect. I did a couple then gave up, I found it miserable and it added hours to the session. Once I decided to stop I felt better - only you can decide what is right for you though.

Meercat I kept meaning to post to say I hope you are having a fab holiday then read your update. What a bitch!!!!!!! If you have kept your mouth shut you are a saint.

Hello to new people here and I hope you are all out out of the misery that is waiting soon.

I am having an interesting week. It was lovely to finish Rads, thus technically at the end of active treatment, but going away for the weekend without my strong painkillers - what the hell was I thinking. I hadn't realised that the only reason I was getting any sleep was because of them. My skin is disgusting, I look like a horror film where someone has taken a peeler to the skin. This is the sorest I have been in six months. Apparently the week after Rads is the worst then it gets better so fingers crossed.

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YoureAQuizardHarry · 02/10/2019 00:21

Hello. I'm so sorry to gate crash hopefully I'll be able to leave you lacies in peace soon.

Ive had bowel issues for about a month and it's got to the point now where I couldn't ignore it any more. My family has a history of CA Bowel. (Can you tell I'm a nurse) so I went to see my GP today and I was referred immediately for a colonoscopy on a 2 week pathway. I've got to have bloods tomorrow at the surgery and the amount of things they're testing for is insane. My CEA result is off the chart so I need re testing for that.

I'm pretty young so this is a bit ridiculous but I've had a lot of sweating it looks like I've been in the shower constantly dripping off me it's disgusting, exhaustion, near constant diarrhoea for a month and the subsequent pain with that. I just want answers now! I don't even care if it is cancer any more I just want to know it's not in my head.

My GP have been amazing though in that even though I'm 'far too young ' for bowel cancer my dad died of it very young and his mum had ulcerative colitis so they're treating me seriously i thought I'd have to try really hard to get them to listen.

Sorry this is so long!

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meercat23 · 02/10/2019 00:25

Snows. The week after rads was
My worst too It really dies get better.

Skap. Cold capping
works really well for some chemo regimes and not at all for others.
If you are not happy with the idea and you are not certain about it then there is no good reason to do it. Whatever you decide needs to be right for you. What are the people telling you to do it offering as evidence that it is right for you?

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Bloodybridget · 02/10/2019 03:46

Oh Skap, you really have had a hard day. You absolutely don't have to have the cold cap, as you know I didn't do it, but I'm sure people who did will come on and talk to you about it. Just FYI my head is definitely sprouting a bit more fuzz now, my hair only fell out after my first chemo. But your drugs will be different and I'm only having 6 sessions. When are you going wig shopping?

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Bloodybridget · 02/10/2019 03:52

Oh I hadn't seen previous posts, stupid me.
Youreaquizard welcome, sorry you have the anxiety of suspicious symptoms, and the pain and diarrhoea too, how horrible. It's great your GP is referring you for tests, as they should of course. Keep posting here, we will keep you company and there will be people with experience of bowel problems to talk to.

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Bloodybridget · 02/10/2019 04:02

Snows you poor thing, really sorry you are suffering with skin problems, and lack of sleep while you were away. Do hope things improve very soon.

I am seeing my consultant tomorrow, have decided to ask about follow up when chemo is over (because I have no idea what they do or when), and wondering if I also want to ask searching questions about recurrence - such as, if it happens once, is it more likely/almost certain to happen again or not?

I have a tickly cough, my stye hasn't cleared up although it's better than it was, and I have some neuropathy in my foot. How likely is it my bloods will be ok for Friday Confused?

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ellenanora5 · 02/10/2019 08:40

Good morning everyone, sorry I haven't been on for a while, have had a lot going on with ds2 and trying to juggle his appointments with mine have me fed up to be honest, think I have it all sorted now, the radiotherapy team have been really good with changing times for me, they are very understanding, I only started radiotherapy and already had to have times changed for the next two weeks, which is a pain for them as they already agreed with no early or late afternoon appts to accommodate ds2 needs.

Under my arm is starting to get really sore since the radio started, wonder is that because of the position I'm in when its going on, going to mention it today.

I'm sorry to hear everyone is going through such a hard time at the moment, and welcome to all newcomers, the posters here are truly wonderful and so supportive.

Has anyone got the flu injection, will they give it when we are having treatment.

As always Flowers for everyone and you are in my thoughts.

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Borntobeamum · 02/10/2019 08:53

Morning all and welcome to the new posters - I’m sorry you’re here but you’ll be made very welcome.
I have an appointment re my Lynch Syndrome today to meet a genetic counsellor.
DH is away on business so I’ve to go on my own. It’s to a town I’ve never been to before so no idea about availability for parking. I’ve Google’s but if didn’t really help.
I’m going in good time so I can acquaint myself with the area.
Isn’t it silly how such minuscule things take over?
I’ll report back later! X

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Brassica · 02/10/2019 08:58

I’d echo the comments on cold capping Skap. If you don’t want to try it, that’s entirely fair enough and a sufficient reason to say no. I don’t think the nurses will think anything of it if you arrive on the day and say no. I did two sessions with it, found it bearable (the first 10 minutes were shockingly cold but I put headphones on and listened to a favourite song - really took my mind off it) but snows is right, it adds a lot of time on to treatment and it also didn’t prevent hair loss for me so I had no qualms about stopping.

Sorry your skin has been so sore snows and you must have been kicking yourself about the painkillers. I hope it improves quickly now. How’s the tiredness?

Bridget you sound a bit run down don’t you, I hope the stye goes away soon. I found the blood count didn’t necessarily correlate with how I was feeling - sometimes I felt fine but it was on the floor, other times I felt awful and scraped through. Maybe if taste buds and appetite allow you could eat some red meat and have orange juice or something to try and get some iron on board? I’ve been thinking the same thing about starting to ask what happens re monitoring when all this is over. I think it’s sensible if you feel you aren’t the type to over analyse!

Welcome back, flyingarcher, but sorry you’re going through such a lot at the moment. Just feeling rotten and exhausted is bad enough but you’re obviously now concerned about your toenail. Let’s hope it’s just doing a good impression of a melanoma but is nothing new to deal with.

And welcome Quizard. It’s very good that your GP has jumped into action but of course you must be full of worry and also feeling pretty poorly if you’ve had dire rear so long. Do you have people you can lean on as well in real life? How old are you? Have you been able to work while all this has been going on? It must be exhausting.

I’m off to see my surgeon today to get a date for lumpectomy and then we are meeting up with old friends to celebrate one of them turning 50. Hope everyone has a good day and those feeling unwell get some relief. Flowers

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Bloodybridget · 02/10/2019 09:34

flyingarcher sorry I missed your post earlier, as Brassica says, hope your toe is not a melanoma, and that you do OK on letrozole, and generally start to perk up.

Brassica I have been eating quite a lot of red meat (orange juice has tasted wrong since chemo started so have given up on it), and I had the Zarzio jabs after last chemo, which did the trick for neutrophils the time before, so maybe it will be OK.

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WTF99 · 02/10/2019 12:24

Hi all,
Just jumping in quickly 're cold cap. Im about to do it for the 7th time on Monday, fingers crossed.
skap no-one will judge you one way or the other and in fact there were times when I thought the nurses would have preferred it if I wasn't doing it as it was a time consuming faff for them!
It does extend the time you'll be on the unit as you have to have it on for a while before treatment starts and to leave it on for a while afterwards although that does vary quite a lot depending on what chemo drug you're having. Owing to my change in drugs, I have it on for less than 2 hours now. It was much more than that for the first 3 cycles.
It hasn't been comfortable ( the first 15 mins are the worst) and some sessions have been harder to tolerate than others, but obviously it's been doable as I'm still doing it! Don't forget that you can decide not to continue at any point, even half way through a session if you want to. That thought helped keep me going I think.
In terms of effect, I have probably retained a third of my hair and whilst that's not as good a result as I would have hoped for, now that I'm almost at the end I'm pleased still to have some hair and not to be at a complete standing start of baldness. It's a very individual thing however. During cycle 2 loads of my hair came out. It was so upsetting and I was on the point of giving up and going for the shave but I had a chat with my real life chemo buddy (3 years post chemo) who said "some hair is better than none" and for me that's been the case.
Just a couple more things.....if you don't do it first session you can't change your mind and have a go later on.....you probs already know this. Also don't worry about being picky that they've applied it correctly. I had a student nurse doing mine the first time and in hindsight I'm not convinced it was on properly, hence the poor result...possibly.
Good luck with your decision.

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