September Sizzlers

[nappinggirl]

Goodness Jill, I really feel for you.  I hope the Dr can give you some proper help and advice.  I think once we finish the treatment we are abandoned way too early and need some access to professional help for the first few weeks (at least) afterwards.

Will be thinking of you tomorrow xx

[Jill1998]

Morning NP glad you are healing and managing to dip your toes in the world of work again.I know what you mean about it being nice to have something else to think about apart from cancer!!Now my treatment has finished I feel in a bit of a void ,trying not to fill it with thoughts of what if and spend too much time examining my bald spots.Think I will be going to docs tomorrow re skin under boob as I think it may be infected and or may need something additional to what I have been given from the hospital it is red raw and weeping very painful indeed.I am one week post treatment hoping things will improve soon,will have to weigh up issues with Tamoxifen as I get only a very small benefit and the impact on my hair is making me feel very low and I don't want to end up in a depression.

[nappinggirl]

2 weeks after treatment.

Just thought I would say how things are going and send love to everyone going through treatment.  You all sound like you're having a really tough time of it with the medication.

I've been back at work for 3 days and really struggled with fatigue.  I've been lucky in that my manager has been very understanding and that she doesn't expect me to work afternoons as the moment and I can just go when I need to.  Have been coming home and sleeping until early evening.  Mentally it has been great to be back and away from BC but physically it is very hard work, my body can't do what my head wants to. Skin is still sore underneath my boob and nipple but the rest has healed up but still getting lots of 'electric shocks' which take my breath away so still painful.   I have my follow up appointment in 2 weeks with the Onc.  

Big hug to everyone xx

[catchpole]

Hi Sharnie, O so you were under Norfolk and Norwich, was impessed with the treatment recieved there, read today Norolk and Suffolk has one of highest rates for quick diagnois and treatment of breast cancer., 

Ive been quitelucky with tamoxifen, camn live with flushes and feel ok do feel a bit like cant be bohtered, but ive never been really a very positive peraon, so not sure if tht the tamoxifen, if you say it can have effects on your mood,  I know i should start going out abd trying to meet new people as all my friends have partners but i dont seem to be able to get my head around it,  Hope not the tamoxifen as ir seems ok in other ways.

Yes im lucky am a quick healer, not looking forward ro dark nights though that will affect all our moods.

June

[tweeks123]

I was the same jill my jair is nice and thinck now not limp and falling out all over. My hair brush was full of it every time i washed it .x
xhristine x

[Jill1998]

You did the right thing Christine it was crippling you. I will give it another month or so before deciding what to do ,I am feeling really depressed with the impact on my hair,makes me feel v self conscious and low , I know it's superficial and vain but it is having a big impact on how I feel .

[tweeks123]

Hi ladies
If i would have carried on taking letrozole i would never have been fit for work just reading your comments about SE making me cringe ..ive stopped taking mine and im feel 100% my self again its shocking what the SE do to you ..That was my choice for the small % of it coming back.. no ones knows if will come back with or without the tablets ..Im living healthy lots of spinach and brocli meals alls i can do is look after my body ..I dobt even take one tablet just the odd paracetamol if needed ..ps... im goinna look like popeye soon .. Xx

[Jill1998]

The stress and upset of the side effects can't be good for our immune systems either.I quite like Kale stir fried with balsamic vinegar !!!

[mf]

Yes, I think a strong immune system has to be the best way of dealing with the risk of recurrence. Actually like - kale - but mixed in with mashed spuds!

[Jill1998]

I'm thinking I may be able to make 0.5% gain by eating better and drinking less,bring on the Kale!!!

[mf]

Thanks, Jill. Will ask re Tamoxifen. Already refused chemo at 4%, or rather was advised not to have it due to allergies.

[Jill1998]

Very difficult choices.To put it in perspective if your benefit from chemo is less than 4% most Oncologists leave the decision up to you as the gain needs to be balanced against the side effects of treatment .Tamoxifen works in a different way so may give you less problems with bladder,slightly less benefit I think post menopause but def worth considering ,if it wasn't for going baldy I could live with the side effects .

[mf]

Hi Jill. Sorry to hear about your hair loss. Mine seems to have slowed down but will no doubt resume when I'm back on the meds. One of my colleagues got thin hair on Tamoxifen. She stopped taking it because the other side effects made it too difficult for her to work. That's something I'm concerned about with Letrozole. If the SEs are as bad as last time, I won't be able to live a normal life.

[Jill1998]

Marcella you should ask about whether Tamoxifen would be suitable for you as an alternative too,I think both post and pre menopausal women can take it.

[Jill1998]

Really difficult isn't it when these pills can cause so much misery in side effects too.I feel quite depressed that I may be left with that choice.I have only 0.5% benefit over 5 yrs ,1.5 over 10 yrs which is not great but I will have to live with the what ifs if I stopped taking the meds..Cant stop looking in the mirror at my receding hairline, it's making me feel very low.Hope the shampoo and supplements etc will help.

[mf]

Morning all. I saw the dentist yesterday (female, and her mum had BC so didn't mind telling her). Onc had told me that my bleeding gums while on Letrozole were prob due to dental issues but dentist said teeth are fine and it was due to meds. I see onc on Monday after a month off meds due to blood in urine and he will put me back on Letrozole to test if it really was causing all the probs I had. I'm just beginning to feel better and am absolutely dreading going back on it. I feel I have to give it another go to get the 4% added survival.

[Jobey68]

Hi Jaye, So I'm not the odd one out after all lol! I finished in June this year so no hospital for another 9 months sounds good to me!! Thanks so much for your message and great news that your all clear 😀 Xx Jo 

[Jaye]

Hi Jobey

You are not alone in not having a follow up appointment after rads.   I didn't either, and thought it most strange as everyone else seemed to have one.

I finished rad last year in June and received a letter for first annual check up this June, which was a year on from finishing treatment.

Thankfully the mammogram was NED but I did have to wait 3 weeks for the results.

Not sure if it was because of the policy that our hospital has -  I had rads at Leicester Royal Inf.

Jaye x

I

[Jill1998]

Glad you have found a way to make it more bearable Egret.The machine broke down once when I was on it,they had taken 15 mins to get me in right position etc so they said lie still we will see in maintenance guy can fix it,so lay there arm up , boobs out ,while he tried to reboot it to no avail!! had to get dressed and move to wait for another machine .They are in use 12 hrs a day and I found that most days one of the 8 machines was out of action at some point.You have nearly done your first week !!!

[Egret]

Hi Jill1998!

RE: Breathing technique: the ABC breath-hold device to protect the heart in left side bc.

Thank you for your support.  I asked the nurses and I was told that, yes, the tube and the mouth piece was a "one-size-fit-all". There is simply nothing smaller available. I discovered a picture on the internet and it seems the system or device is calles the "ABC" breath-hold.  The nurses are giving me more time - I asked to do it myself to ensure a bearable position. Apparently, the device is a new additio not available widely

Although the ABC device is very intrusive, I am grateful for it, as it is minimising the rads leakage to my heart. I would advise anyone confronted with this tube and hard plastic blue insert, to place the insert themselves rather than having it pushed into one's mouth.

Rads was delayed by 4 hour due to the machine delivering the rads breaking down!

I am a bit nackered.  Hugs, Egret x

[Jill1998]

I will have a look at that Jennifer,how quickly did it help?Have visions of going back to work bald!!Yes, thats a good idea I will tell hairdresser its menopause!!

[Jennifed]

Just tell them it's menopause.  I am through the menopause ( but now back in it thanks to letrozole) but when my hair started to fall out my hairdresser told me that vitobiotics menopace really helped and it did.  Don't know if it's ruled out because of BC treatment but worth trying? 

[Jill1998]

Are you getting on any better with your breathing tube Egret?Hope it less uncomfortable.

[Jill1998]

Jo ,that's weird that you seem to only one not having follow up , could it be because you had very little side effects from rads?My skin is and was a mess and had to be prescribed various creams by Onc.

[Jill1998]

Julie ask the dentist about Tamoxifen too.Im not due til November to go again.I know what you mean Jennifer about the stigma,it's like having to tell people all over again which I found very hard in the first place,I haven't told many people.GuessI am going to have to discuss with hairdresser too given the state of my thinning hair.What joy!!

[Jobey68]

I did think maybe I would have a check up afterwards, my ONC said she hoped to see me again at the moving on day in Sept but then in the nicest way never again after that! I did have a letter I was given at final rads and that just says about how things had gone and under the follow up section it says to see surgeon at annual check up, I'm not worried about anything and it's lovely to free of hospital and but i do seem to be the only one here not having a follow up! 

[Aura]

Hi just reading past few threads about what you all have been saying about having to tell people re having BC And medication I totally agreeI work in a dental practice and it is really important that the dentist knows all your medication details as if he needs to prescribe you some thing it could interact with the medication you are taking . I know if a person takes bisphosphonates we have to be really careful about extracting teeth . I will have to ask him about letrazole x

[Jennifed]

And I am so sick of the cancer charities calling me, Mcmillian Coffee mornings and they are even running a cancer story on Coronation Street!  No escape! 

[Sharnie]

Yes totally agree Jennifer. You try to put it behind you and then it comes up again and again - I'm fed up hearing I'm sorry! People don't know what else to say I guess. You certainly find out who your true friends are too! 

[Jennifed]

I hate having to tell people - nobody knows what to say and you end up feeling like an object of pity.  My husband took me to a lovely Spa hotel last weekend and one of the questions was.......do you or have you had cancer?  I HATE THE SENSE OF STIGMA......

[Sharnie]

I just remember reading somewhere about telling dentist as I think as Letrozole can affect your bones maybe it can affect your teeth too. I had to tell him and then the reception staff as well as had to update my medical history.

[Jill1998]

Thanks Sharon,yes I thought about having to tell dentist too, Don't really want to discuss with him to be honest.

[Sharnie]

Hi all, just dropping by! I've had tiredness kick in again tonight but did have a full on weekend and been at work today. So far just got hot flushes back since taking Letrozole, fingers crossed I don't get any other problems. I have an appointment with onc in 3 months time but I think this is because he changed my tablets and it's a follow up to see how I'm getting on with them. I do have an appointment for next year as well - happens to be on my silver wedding anniversary so might change it - hoping to away somewhere nice for a few days. I am trying to put everything behind me but today had dentist appointment and had to mention it as I had to inform them of changes to my medical history and tell them I'm taking Letrozole. It does get better day by day and my skin is quite good now - just darker on the treated side. Hope yours heals soon Jill. 

[Jennifed]

Jobey that does not sound right.  Ring your BCN and find out why you don't have an appointment

[Jobey68]

Free tea!? I had to buy coffee in the M&S cafe 😡

[Jill1998]

I miss the free tea and the nice souvenirs .....NOT !!!!

[Aura]

I know what you mean Jill seems strange not having to go to preston gets to 3 pm and I feel like I should be getting in the car to go . Your boob sound sore hope it heals soon . Poor Claire bet she can't wait for Friday. This week must of dragged for her as she hasn't had you to talk to this week . Makes a difference just to have a chat to someone . Looking forward to catching up when we meet . X

[Jill1998]

Glad you are feeling better Julie, it's weird finishing isn't it , a bit flat and OMG what happens now???Claire still there til Friday she is pretty fed up !!!

[Jobey68]

Nope! Had end of rads review with a lady in my last week but nothing else, been invited to a moving on day this month but that's in a cricket pavilion so not a check up! Can't go as will be on holiday anyway ☀️☀️ Will be called back a year from diagnosis for mammogram is all I've been told xx

[Aura]

Evening ladies hope we are all ok . I was told same as you Jill appointment 6 weeks after rads finished with oncologist I also have my 6 month appointment with consultant on the 27 th October . My boob is still red and feels itchy , and I'm still tiered but not as pissed off as I was on Monday xx

[Jill1998]

I was told 6 months after surgery reviewed by surgeon,6 weeks after rads reviewed by Onc.

[familytree]

You must have app for a year down the line with your surgeon? I think it's standard. I have app with onc end of Sept Too. X

[Jill1998]

Ooh ,you were short changed there Jo !!!!I see Onc again in 6 weeks,didn't you have a post rads appt at all ??

[Jobey68]

Well now I'm feeling left out ladies ! No follow up appointment for me , just kicked out after rads and that's that! 😕

[Jill1998]

Yeh,the go away and try not to get it again conversation is fun !!!I still feel in a bit of a vacuum to be honest ,boob very ,very sore and weeping blisters ,but I can live with that, it will get better.I need to get my head together and think about work and like you have said how to live with this in the background of our lives.Not gonna let it spoil my life just need to work out how!!

[Jennifed]

Hi Jill - two weeks on from ending rads I am still pretty weary and very up and down about the future.  I've had a few rough days to be honest but also some good ones.  The letrozole ( I'm on the third month) seems to have hit me and I've got aching joints and legs.  I'm supposed to be doing one of the Shine night walks in two weeks but as three miles tires me out at the moment I'm not sure that I will go. That's a hard thing for me to accept as I've always been fit and string.  I haven't seen the oncologist yet so the end of rads has left me in limbo again as I haven't even been told to go away and not get it again! The appointment is on the 29 th so I'm still on the appointment treadmill till then. After that?  God knows - I've taken up yoga/meditation and even booked myself on one of the "moving on " courses.  It's scary.  How are you?  

[Jill1998]

How are you doing Jennifer?Are you feeling any better ,I am getting used to the idea that treatment is over but it is scary to be put out to pasture isn't it ?!

[Jennifed]

Hallo Egret and welcome to the thread.  As Jill said, I am a left sider too and had to hold my breath for up to 25 seconds each treatment so that my heart shifted out of the path of the beam.  My cancer was in the top left quadrant of my boob, so a little less close to the heart than yours.  I didn't need to breath through the tube and I am grateful because that sounds horrible.  However holding your breath can be quite difficult especially when they do two " zaps" at a time and you are feeling worried/ nervous and you can see the machine shooting radioactive gammas at your breast!   Enough to make you wet yourself ( don't worry I didn't).   I got quite worried about losing control mid treatment and ending up with a cooked heart to add to my miseries.  I'm glad to say that the radiologists were all brilliant.  I told them of my fears and they explained how the infra red beams are measuring your chest expansion and the beam is cut off as soon as you start to breath out. They also varied the length of "zaps" if they felt that I wasn't holding my breath well.  So I guess my advice is that you must let them know that you are uncomfortable and ask them what will happen if you feel that you must breath properly and remove the clip.  I'm sure that they will be able to adapt things to help you through.  I had a few days when I found it hard to do the breathing properly and they coached me through.  I'm sure it will be the same for you and you will be half way through before you know it.  Keep us posted on how you get on.  Best wishes Jennifer

[Orlando]

I am also a left sided and was worried about this technique. I also have a small mouth, I had a lot of orthodontic treatment years ago because of it. I found the first two or three sessions difficult getting the mouth piece in correctly but then got the hang of it. I also got used to the breath holds and no problems. I have just done 10 of 15 sessions plus I have 4 boosters to do. 

Hope all goes well

[Jill1998]

Ps my sessions got a lot quicker after the first. 3 or 4 as they got me into position more quickly and didn't have to take x rays .