Cancer Support Thread #71 - here to help if you’re dealing with cancer in any shape or form, come in and say hello.

[Brassica]

Hi again everyone and welcome to the 71st new thread for cancer support.

All those who are currently being treated, have been treated in the past, have worries and concerns and/or are having tests are very welcome to pull up a chair and chat, vent, rant, pour hearts out, share milestones and anything else! We are a very friendly and all-too experienced bunch on here and there are no questions too small or silly to ask.

Our previous thread is here .

Anyone with any type of cancer (female or male) is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

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

Please can I invite current members to reintroduce yourselves below for latest situations and stories so far.

Really sorry to hear your news Skap. Treatment takes it's toll but you do get through it, I am Chemo/ Surgery/Rads too but I have the added joy of an Inflammatory Breast Cancer diagnosis (rare and aggressive) so it's hard to compare treatment plans. Look after yourself xx

@Skap so sorry to hear that you had bad news; I hope that you don't have long to wait before they have a concrete plan for you.

skap so sorry to hear your news....was thinking about you yesterday.
I've had surgery, now on chemo and will be having radiotherapy and on going herceptin/perjeta until next year as her2+. It's a shocker no doubt about it, but doable. Support and advice here is fab. Stick around xx

snows thanks for the painkiller recommendation.....will get some of those in.
bridget I was really shocked when blood results were dodgy prior to my second treatment. Worst of it was that because I have my blood test on a Friday, I didn't know there was a problem until I got to the unit on the Monday morning all geared up for it. And I'd felt really fit and well the week before. Anyway they did a repeat bloods there and then and fortunately my neutrophils had bounced back over the weekend so treatment went ahead. But I don't take it for granted now.

Well I managed about two hours sleep. At one point I almost laughed as I decided that there were just so many different things to worry about that no individual thread of worry was going to get sufficient attention.
I will narrow down a list for the BC nurse.
Bloodybridget That link is excellent thanks.
SnowsInWater The reasons for Chemo first then surgery were explained but in my head I think it will be busy spreading while I have months of chemo.
The hair loss thing. I am so not vain. Never wear make up, seldom look in a mirror and yet.... it's like a bloody great label on your head for the world to see. Little chance of keeping it private.

Sweaty greetings to all.

Sorry to hear you had it confirmed yesterday Skap. I had done a bit of internal plea bargaining before getting my results and was convinced that if I could avoid chemo anything else would be ok. Of course I turned out to need chemo before anything else, and am still going through that so my strategy didn’t really work and it was a blow. Chemo is a scary beast to contemplate and it’s not a walk in the park, but it is doable with support I promise. Depending what kind of bc you have (ie responds to hormones or not) dictates whether you have other long term tools in your armoury or not, like herceptin or tamoxifen. I have triple negative bc, which responds to nothing but chemo. Happily mine is really taking a hit from the chemo so actually it’s turning out to be my best friend, albeit I hope I won’t be staying in touch with this particular friend! What I’m trying to say is that with a bit of time to adapt you will manage this and chemo may not actually be the bogeyman you may think.

Redspook how are you feeling a couple of days on? Are you in isolation for this treatment?

Born, sending you good luck and thoughts for your procedure tomorrow. I very much hope it’s all ok both to go through and with the findings.

Bridget, well done on getting your head shaved. I think you said you had pretty short hair anyway so perhaps the new look isn’t too much of a shock but how are you finding it? I find myself quite enjoying my shaved head as it’s cooler and less maintenance than before! Hope your blood count is in bounce back mode too ready for tomorrow.

Kep is it tomorrow you’re due to speak to your GP? I hope you get some clarity from him/her and more sense of what is going on.

Toofar, it must be rather poignant to look back at the six month mark after such a drastic surgery. It is brave of you to share. Are you still receiving chemo or anything at the moment? Hoping there is further recovery on the cards ahead for you so you can feel better still.

Ellen are you managing to get a bit more sleep, or is that a stupid question in a heatwave? Good luck for results when they come.

For me, I’ve had 9/16 chemo on Tuesday, and it’s a gentler week so I feel ok at the moment and hope to continue to. I saw my breast consultant yesterday and had an ultrasound, all looking really good in terms of response and he’s happy. We are not setting any ambitious targets for today in our family - shade, water, not much more than that!

Hi to anyone I’ve missed.

Oh Skap - don’t think like that, the chemo is the cavalry going in to stop the growth in its tracks. Remember its mode of attack is to kill fast growing cells. Having chemo first is to give the surgery the best chance of getting rid of anything left at the end (by shrinking the tumour) and to stop any floating cells from getting in anywhere else. If you had surgery first, depending on the size of the tumour it might need to be a bigger surgery and have less chance of getting it out with clear margins, and also it would still leave time for floating cells to move. Chemo first is very common, hits it hard and is designed to avoid spreading.

I hear you on the hair loss/cancer badge. You’ll probably hate the idea right now but wigs are very very convincing and if you wear one most people are too pre-occupied to notice. No need to show it externally if you don’t wish to.

Brassica that's really helpful.As was your post above with "things to ask". It's ER negative. See I'm learning this new language already that no-one wants to speak. Don't know yet about HER2. The breast surgeon had actually explained the reasons for chemo first, and said it was borderline but your explanation has made it sink in. The oncologist will have the final say. I guess if they keep on scanning and measuring that will be some reassurance.
Oh and a bonus. Free car parking. .

Am now concentrating my worrying towards hair. I'm 61 and my hair has never looked better. I do nothing to it, it has greyed in a lovely colour. A wig will be torture but I can see the benefit of having one for certain outings.
I will go and get it cut short next week for a start. A small measure of control.

skap I turned 60 earlier this month whilst in the middle of chemo and with my lovely hair falling out....that was a landmark birthday I can tell you!
The hair loss thing has been a major deal for me (lack.of privacy, self image etc) but I'm gradually coming to terms with it and managing it with a variety of headwear and a really good wig. I went out in it for the first time yesterday. Picked my dd up from the train station and it took a few seconds before she really noticed as it looked so convincingly like me....and she's seen the new thin hair me!
Im finding it an education in what it is that makes up self esteem and I feel like I'm learning a lot about myself through this process.....what's important in life and that I have a little inner core of steel that i didnt know i had. Will still be very happy to have my hair back eventually though!

brassica I had surgery first. No discussion and I didn't ask. Kind of wish I had now but I guess that boat has sailed! Chemo started 4 weeks later. I think one of the advantages of chemo first is that you have hard evidence of the drugs working as the tumour shrinks, hopefully to nothing. I'm just crossing my fingers that it's all working for me. Time will tell....

WTF I'm just hoping not to get a call from the hospital today! How crap that you didn't find out till you got there, you'd think someone could have called you.

Fingers crossed for youBridget that your bloods are OK and no call comes through.

Hi everyone, hope you are coping in the heat.
In 2012 I had thyroid cancer so they whipped it out.
In 2014 I had triple negative breast cancer, lumpectomy, 6 rounds of chemo, 28 rads.
In 2016 despite being told it was impossible for us to have more children we were surprised with our DD.

Ff to this week, I am now 43. Had my routine annual mammo on Monday, phone call 2 days later from my nurse to say they aren't happy with it - microcalcifications apparently, off for another mammo, ultra sound and biopsy tomorrow.

All on top of my dm being given a terminal diagnosis in April.

Totally pooping myself this time, simply because I can't bear the thought of telling my dc again, let alone my parents who are having their own struggles. The thought of adding to their worries horrifies me. Not sure I'm over keen to go through chemo again either.

I am the least patient person in the world, so waiting for results is just the worst for me.

Thank you for listening to me ramble, it helps to just get it said. x

Fingers crossed Chemo goes ahead today Bridget (it's already Friday here 😊)

Minx that sucks! It looks like you have had more than your fair share of bad things happening already. I will hope that it's a false alarm, keep us posted.

Skap I was really adamant that I didn't want the obvious "cancer badge" of losing my hair when I was first diagnosed. I started by using the cold cap for Chemo so ask if that is an option for you. I gave up on it after a couple of sessions but I guess it helped as I managed 5/8 fortnightly Chemo sessions before shaving my head. By then I really couldn't care that much, I have a wig that I have never worn but my headwear collection is growing nicely! It's Winter here which helps, the hat I'm wearing today could just be anyone with short hair covered by a hat. On days that I was feeling shit from Chemo having people be a bit more considerate around me was actually not such a bad thing! It's very personal though so do what is right for you. Knowing that I will have no breasts this time next week makes me a bit ambivalent about hair 😁

Ive just received my bowel cancer screening kit through the post....lovely 60th birthday present. Surely I'm not gonna have to do that whilst I'm having chemo for breast cancer?? Not sure what to do. Im seeing my oncologist next week so will ask him. I don't think I can cope with any more investigations.

Hoping bridget and born are getting on ok today

WTF I got mine a couple of weeks ago too. I decided not to do it because I was having so many nosebleeds caused by the chemo that I thought it could cause problems. I didn't want any false results prompting more tests either.

My last Rads session this morning. The Radiographers were so lovely and it was all much more emotional than I expected. They asked me of I wanted to ring the bell but I opted to wait until all of the three weekly Herceptin sessions are done and do it then at the chemo centre.

Hope the week also ends well for all those having treatment or waiting for answers.

Minx hopefully they are being extra cautious because of your history. I imagine you'll know more after today's ultrasound?
SnowsInWater the nurse did mention the cold cap, I guess I will try it. I may feel differently once friends and family know about my diagnosis.You have surgery next week? I remember being in hospital after a miscarriage many years ago and all the other women on the ward had had breast surgery.
meercat23 sounds like you near the end of treatment. I don't blame you for not doing the bowel test.

The lovely BC nurse rang me yesterday to ask how I was after having been given the news on Wednesday. She answered a couple of questions and seems very efficient. I have a lung condition which results in chest infections and they are testing for that as well as it would affect chemo or surgery. The plan is for CT and MRI to go to the MDT on 6th and I will then get a definite plan.

I was duly zapped today, hurrah! Thanks for good wishes which I'm sure gave my neutrophils a kick up the bum!

Minx, really sorry you have to have more investigations. I do hope it's either nothing, or something that can be treated very easily.

WTF on my way to the hospital for a mammogram in May, I got a text message from the Royal London hospital to say I had an appointment there early the next week; i knew that was where I'd have surgery if I did have cancer, so it was like, diagnosis by text, great! And then in due course I got a letter saying, good news, you don't have breast cancer! Do you think your cancer and treatment would make any difference to your stool samples?

Born hope all went well today.

Brassica yes my hair was already less than half an inch long, but when it started falling out there still seemed to be far too much of it! I'm very pleased to have it shaved, I don't feel particularly self-conscious about it. Of course I'm wearing a sun hat when necessary. Glad you were feeling OK yesterday, hope that is still the case today.

bridget I'm not sure about the impact of chemo on stool samples . I'll speak to the oncologist about it when I see him on Wednesday for my mid-treatment review. I just don't think I can face a 2 week wait for results with what I'm going through at the moment. And what if they found something? What would they actually do? Can you even have treatment for 2 different cancers at the same time? And presumably I can't have surgery for anything bowel related if I'm having chemo for breast cancer?
No reason to think that any of this would happen of course, but then I didn't ever think I would have breast cancer so that charmed sense of 'it'll never happen to me' has gone for good.
Just really bad timing. Maybe I'll leave it til I'm done with treatment.

Have you thought about when you will do yours meercat? I should imagine it's the last thing you want to do having at last reached the end of your intensive breast treatment. Congrats on that by the way. It must feel good. Are you doing anything this weekend to mark it? I thought that at some point i might have a get together of all the people who have supported me so that I can say thankyou to them properly, but I don't know if I'll actually do it when the time comes. I don't really get the bell thing? What's that all about? I came across a YouTube clip of someone doing it, but I think it was in the USA and I just kinda thought it was an American thing but I guess not.

In other news, I'm having a catch up with my boss next week and I think I'm going to go officially off sick. I'm coming to think that l owe it to myself to devote my limited energy to maximising my health and well-being whilst I'm dealing with all of this and I do feel guilty if I'm not working on the days when I'm feeling ok.....can do without that.

Hope everyone is having a good day. It's raining here but cooler at last

WTF I didn't not do it because of the chemo so much as because the chemo caused me loads of nosebleeds and I thought that probably quite a lot of that was going through my digestive system and I didn't want any false positives showing up because of that. Not sure when I will do it but I was supposed to send it back by now so not sure if they are time limited. I will ask about that.

Both the Radiotherapy centre and my chemo centre have the bells. I think they were originally only on children's wards but I read that some research or other showed that it was therapeutic for adults too to mark the end of treatment in some way so they put them in adult wards too.

I didn't do it because I don't feel that it is the end of treatment while I am still having 3 weekly Heceptin but also because I was already more emotional about the end of rads than I expected. I think ringing the bell would have tipped me right over the edge.

This weekend I am just enjoying the fact that I don't have to get up at the crack of dawn all next week to get to the centre on time.

I think taking some time off is definitely a good idea. My treatment regime has been easier than that for most people here but it has still been exhausting. I have tried a bit too hard to keep everything normal. I only work some days on a free lance basis but have tried very hard not to turn any work down. On reflection I think that was not the right thing to do and I would have been better to go a lot easier on myself.

Much cooler here today too and that is quite welcome. On the other hand I hope that is not the end of the sunshine as I feel I have missed most of summer already!!

WTF I completely understand why you're reluctant to do the bowel cancer screening atm. Good idea to talk to your oncologist about it.

There's a bell in the main entrance lobby of the hospital where I had surgery (Royal London) but I can't imagine wanting to ring it, it seems a bit public - and tempting fate?

Yes to tempting fate. I hadn't even acknowledged that to myself but it has just struck a real chord

Skap its such a shock isn't it.

Four weeks ago I was skipping around like the fifty one year old I am and since then I've been in a sort if fog, I wonder is it usual to be thinking it will all be fine while other people are sick with worry for me.

The bloody heat is making me sweat into the dressings which then brings on the delightful stinging in my armpit and under my breast, I asked the nurse if I could take the dressings off but she said if I can bare to try not to, so only three days to go thankfully.

I'll know on Tuesday what the plan of action is, my ds2 is disabled and so far have had huge help with him and everything else from family and friends but I need to know what I've to put in place for the next few weeks/months.

I've been doing my exercises so have a good bit of movement back now, think I'll chance taking the car out tomorrow, cabin fever has set in and I need to get out.

This is a bit of a ranty post I'm sorry

I'll blame the heat and not the cancer

I haven't caught up on the thread but I will over the weekend

You're all amazing

ellen you have my sympathy with the dressings especially through the heat. For me they were the very worst part of the surgery especially the under arm dressing which turned into some fiendish form of corrugated cardboard. It will feel so much better once they get taken off.

I know what you mean about the fog too. For me it lasted for weeks and was a mixture of denial and numbness.

IN a way it has lasted until this weekend after the last session of Radiotherapy on Friday. I suddenly felt very emotional and tearful and last night broke down after a very large glass of G&T and while watching a recording of Queen Live at Wembley. The alcohol and music and an unexpected email from a very old friend who lives abroad and who I still haven't told about the cancer combined to flick an emotional switch and out it all came.

Hi ellenanora5. Good luck with Tuesday and a plan. Somehow a plan makes it easier to cope, or at least to focus the worry.
After taking it all quite calmly I am now moving into full on panic / what if mode.
My immediate worry is having a chest infection and I have to have an MRI on Wednesday. That's just bubbling above the fear that it will turn out to be more advanced than they think.
Then there is the telling my DC (23 and 21) when they get back from holidays.
Meercat Was it cathartic to open the floodgates?

I don't have the brain capacity for individual responses, just catching up with the thread after a few lovely days of fun stuff and being in a bit of denial before surgery this week. Lots of love and hugs and good wishes to everyone from Sydney tonight xxx