The Lacies are back for cancer support thread 56 - all welcome!

[WhatWouldLeslieKnopeDo]

Hello again, and welcome to our 56th thread. Some of us have been here ages and others have just joined. I hope you've all made it safely over to the new thread.

An extra special welcome to anyone who is lurking and feeling a bit shy. We are all quite friendly and we definitely don't bite, so please do say hello if you'd like to.

All are welcome here. We started off as a breast cancer support thread many years back, but all cancer types are welcome and at any point in the "journey", even if you haven't yet been diagnosed. We have all had different experiences but there's almost certainly someone here who will understand how you are feeling.

Our previous thread is here.

I have started the new thread a little early, and I will explain why in a moment.

Thanks for all replies, I am dreading Wednesday but at least I'll know well I hope so anyway, ive waited so long, I'm very sorry to hear your diagnosis rocket it's so scary isn't it I don't know what to be doing with myself but there's great support here I feel much better knowing I'm not alone and there are others here feeling like us and others who have started or near end of treatment I'm writing down how I am feeling and it's helping,do you tell young children I decided not to I've an adult son 23 I told him but a watered down version I have to little ones as well 6 and 9 I don't want them to know the C word is too scary a word for me let alone them.

Bob, my DD was 7 when I was diagnosed first time, she's 9 now. I wasn't sure about using the c word at first but we've always been very honest with her (she has her own health issues)so it felt better to be truthful. As I was going to be having chemo and losing my hair I knew it wouldn't be long before one of the school children commented to their parents who in turn may have said the word cancer and then it got back to DD.
I was talking to a friend on Sat who was telling me about a school mum who recently had treatment for BC but refused to tell her (similarly aged) DD the truth. No one was allowed to tell her but it got to the point the DD sussed and asked her mum outright if she had cancer, to which she replied no!

You know your children best obviously but I guess we have to remind ourselves that they are just children. They don't understand cancer in the way that we do and that by mentioning the word doesn't mean that suddenly they are weighed down by the same burden that we are. Good luck with whatever you decide to do.

MLaB, hopefully you'll hear this week, I don't think you'll have a long wait now. It is definitely a roller coaster in that some things seem to be rushed through and others are a long time coming

Mintyneb I think if I loose my hair I will have to tell them (I don't know what treatment I'll be having yet) my aunt died only in February and I think they associate cancer with death they talk about her often so I think they would be afraid, that I'll be the same ,for the time bring I'll say nothing until I get my treatment plan and get my own emotions sorted first thanks mintyneb

That does make it more difficult for you. I'm sorry you've already had to go through this as a family

Evening all, fresta glad you had a good weekend, minty hope you're ok heading into chemo, must be so tough facing it again. Tutti urgh for lymphedema, very crap
bobdylan, best wishes for Wednesday, as you say at least the waiting will be over, I told my kids from the outset (11/9/7) but the littlest I told enough to be able to talk about it - I didn't want her imagining what was wrong and thinking something even worse - and enough so that any adult she told at school or wherever would understand and be able to help her accordingly. I do remember physically recoiling every time the BCN used the "cancer" word that first appointment, but children don't have that response/baggage mostly, you know your kids best and with your family history that's trickier. The boys both perked up when I used Kylie Minogue as an example of someone looking pretty good post breast cancer
outlaws hope you're staying well after chemo.
Leslie - hope you're ok and you've got your digestive issues helped
MLaB, there was about a 10 - 14 day gap between my mark up appointment and rads starting if that's a help. But they only gave me the first appointment time, I got all the rest on that first proper appointment, they are at random times of the day so very difficult to plan around and it did seem rather trying that they couldn't specify the times in advance
I've had a very tearful day today - first one for months . I was driving to see my therapist, the counselling has really helped me (control freak v cancer was never going to be pretty) and I've been coping much better but I was crying before I even got to the door! Bloody MacMillan "no one should face cancer alone" advert on the car radio with a small boy talking to his daddy, set me right off..... I think it's the lack of sleep from the hot flushes. It's making my life really rather miserable. I might try Nytol tonight and see if I can sleep through them a bit, has anyone tried that??
My memory isn't improving, I forgot to feed DS1 last Thursday Though to be fair, he's 12 and could have mentioned it as I had all 3 in different places and a school thing to get to that evening so was clearly not in control multitasking.
Waves to everyone else, mysilly I've adopted your tamoxibollocks phrase! and rover hope your tamoxibollocks recovery continues apace

Hello all,

Sorry for my absence. I had a rather grim week last week. I felt a bit unwell, but it was mostly dark thoughts. Also my appointment with my surgeon was quite disappointing. I'd rather set my heart on him having a magical solution! Anyway, I feel much much better now, especially after a fun day with my sister at the weekend. It felt like the cancer had completely taken over, and it really helped to just be myself and not talk about or think about cancer at all for hours

Now I will try and catch up...

1234hello sorry that your relative and I have so much common it's not me is it?! though hopefully (s)he is also as cool as me please let me know if there's ever anything I can do to help

chewing I saw my GP for anxiety medication while I was waiting for confirmation of my recurrence, and then he phoned when he got the letter from my team to see if there was anything he could do to help. So they might want to check how you are doing :)

rover I hope your anxiety and depression are easing off now

rocket sorry about your diagnosis how are you feeling? Have you had any further results yet? I hope you don't have long to wait

minty glad you had fun at the party also interesting about the bald patch!

Fresta that sounds really interesting and I am glad you found it worthwhile. I went to a bowel cancer patient day earlier this year, ironically about a week before my recurrence was diagnosed. Obviously it's shit that so many people have cancer, but it does help to meet others in a similar situation :)

Tutti excellent news about your bone and CT scans (fingers crossed about the neck nodes) and also that there's an explanation for the stomach issues :) I hope it has cleared up now? Bugger about the lymphoedema. I hope that it goes down quickly.

MLaB welcome, but sorry you need to join us I hope you get your radiotherapy dates soon

bobdylan I think Macmillan have advice on how to tell children in an age-appropriate way. Also there's a group near me run by Macmillan that is solely about how to talk to children about cancer which always strikes me as a bit specific, but there might be one near you too? I think most people tell them something as otherwise they might notice you are feeling a bit below par and then worry more because they don't know why :) there's definitely no point telling them anything until you have got your head around it though, and know what the plan is

Outlaws you should get a bandage to go over your PICC line so hopefully it will be safe from any clambering children. I have a port rather than a PICC, but I love it. Most of the others at chemo have PICCs. It's much easier than faffing about with a cannula :) good that the side effects have been bearable. I hope that continues. I found some effects do get worse with each cycle, especially the tiredness, but others stayed the same.

mrsrhod great that DD was able to go back to uni and that you could go on holiday :) it sounds lovely. Is DD feeling better now?

pepper and for you. Everything is harder when you aren't getting enough sleep. I hope the Nytol helps.

Waving to royalmama and Mysillydog and gingeroots and anyone I have missed

Thanks everyone this is a bit overwhelming how great everyone is on here. I did get a call back today and my radiotherapy starts next week on Thursday, they asked me my preferred time ( which was lunchtime) and gave me 4pm and 3pm which is a bummer as most people who've offered to help have school aged kids. I get the feeling that I should be grateful that I'm being treated and that I should just get on with it. However as my hubby and I don't drive we are going to be stuck really with public transport which is over an hour each way, moan moan, moan I feel guilty moaning on here when I know everyone is having a worse time than me.

Evening Everyone, Leslie sorry you've had such a dark time hopefully you're feeling a bit better and you're amazing at remembering everyone on here and what treatment they're having that sometimes I find it difficult to think you're having treatment too as you seem so much more together than I am! The depresson and anxiety are loads better than they were although occasionally it pops back in when I least expect it. On the upside I can now watch telly without forgetting the plot Pepper I've used Kalms nights tablets in the past and they've worked pretty well. The Tamoxifen meant they didn't work quite as well although overall my sleep was better (as long as I remembered to take them). I checked with my Onc before I took them and he said it was fine, if fact he seemed surprised I was taking herbal ones and not something from the GP. I know how you feel with some of the adverts, I get that they need money but its still sodding hard when you've been on the end of treatment. I found today in Tesco they were setting up a Macmillan coffee table fundraiser thing and it seems just as you go somewhere and it almost feels normal then that pops up, not helped that it's exactly a year today that I was diagnosed so I probably wasn't in the best frame of mind to start with!

MLaB, don't feel bad about asking for more convenient times. The exact same happened to me and I spoke to the Radiotherapy nurses and they manually went through and found best times for me. It's worth asking.

Thanks Fresta I just feel like I'm fighting all my battles on my own. Plus they don't make it easy, you have to ring, leave a message then wait for them to ring you back

MLaB not very helpful for scheduling lifts, I know, but they may be more sympathetic if you ask in person at your first appointment. It's good you've got a start date though :)

rover I can promise you I'm not together at all, though I'm thrilled I give that impression I hope the depression and anxiety are gone for good soon. Happy cancerversary too! Though I know it's often a time of rather mixed feelings

I saw this Guardian article about breast cancer myths earlier. Not sure if it might be interesting/reassuring for anyone :)

MLaB, I agree it's worth asking at your first session to move the times. I arranged three weeks of early mornings, which they somehow managed to alter to completely random times but were brilliant at changing them all back again. I think they do try to be helpful.

Leslie, sorry you've been feeling both physically and emotionally rubbish. Unwelcome news is always going to knock your confidence but you hide your own anxiety very well. I hope you're getting well looked after irl.

I've got my collar bone scan this morning, I hope the radiologist talks to me. I hate it when they just go silent and expect you to wait to see a different dr for results.

Good luck with your scan mrsrhod and fingers crossed for results straight away

I've got a brilliant counsellor who I can talk to about it all, thankfully, otherwise I think I'd go mad!

Good morning lacies.
Best of luck with those collar scan results mrs and I hope they don't make you wait!
leslie so sorry you have not been feeling well. As mrs said, you make so little of your own struggles whilst offering support to us all here. I am really glad you have counselling you trust. Hope things get easier.
Waving to everybody else. Wishing you all well.

Oh and thanks leslie for sharing that Guardian link!

I agree royal and I am also sending much love to Leslie. I know you are on a hard chemo regime, and I really wish that your surgeon had been more encouraging when you saw him. This is a hard disease in terms of headspace. I find it occupies too much of my thoughts at the moment, and I think most of us will understand what I mean.

Good luck mrs today for your scan results. My experience of scans is that you almost never get the results on the same day, so don't be too despondent if you don't. However, hopefully you will.

I had a hip X-ray last week and I have just been called by the GP to discuss it, with a routine appointment recommended, so I'm going in a weeks time. I am 99% sure this is because I have early signs of osteo-arthritis, which was actually first picked up almost 10 years ago. They would be insisting I come in earlier if there was a problem, but there's still the fear.

Waves to everybody else.

Morning Lacies. Sorry, haven't read back.

They found another tumour and are operating again on Thursday afternoon. Third time lucky ?

Let's hope so Frutti xxxxx

I never read anything about the causes or not of cancer any more. I either scare myself witless or get too blase .

Oh bugger Tutti fingers crossed for third time lucky. Another breast tumour? Is it in the same place? (Sorry no need to answer any questions if you don't want to.)

Will it be another lumpectomy?

for you, though might be more appropriate...

Yes Leslie. 3mm on the other side of the margin to where the original tumour was.
Surgeon is going for a radical half mastectomy this time, and as he said it's not the size of this new tumour, it's the fact that it's very aggressive. He's going to give it one last shot.
They were going to leave it another 3 weeks and I got very uppety, so they've slotted me in on Thursday afternoon.

Fruitti Really hope this is third time lucky. Cancer is one of those things that just has a habit of throwing something else into the mix when you think you're getting over one bit. Very glad they've slotted you in and aren't keeping you hanging around, I think the waiting for appointments and results causes almost as much stress as the diagnosis.

Oh Tutti! Hope they get the whole damn thing this time round.
Mysillydog sorry about the hip! Didn't they suggest anything back when they picked it up?

I have been working out religiously! It keeps me busy and distracted. Being committed to the gym means I feel I am doing something at least to help my body if that makes any sense! I thought of boobz today. Wonder how she is doing since she was so active!

I just feel that I'm richocheting from surgery to surgery, with doses of constipation in between.
I am well and truly fucked off with this cancer lark now and would very much like to get off the bus.
I am actively jealous of you all having chemo.
I feel like I'm sent back to go without collecting £500.

I'm stamping my feet and having a real bloody tantrum here

Afternoon. and for those that need it.
Tutti sorry you are having to have more surgery. As Rover says there always seems to be more things coming at you when you think you've covered it . Having an aggressive bastard type is horrible.
Mrsrhod hope your scan went well.
MLaB good luck with rads.
Leslie hope you're doing ok.
rabbit I get fed up hearing that advert on the radio too.
I have to get more bloods done tomorrow ready for chemo and see oncologist on Thursday. Ds has a streaming cold and bad chest and is off school today so I'm hoping I don't catch it

tutti I had a bag of dried apricots yesterday and that has really sorted my constipation but I'm now bloated and windy instead