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Any triple negative survivors out there?

Warcol
Member

Re: Any triple negative survivors out there?

Hi rachel
I've found you but can't add you (might be to do with your security settings) so add me as a friend and I can then add you! Could you also prIvate message me with your current status and where you live (for admin purposes) I.e where you currently are like having treatment competed treatment etc xx same for you Roseanne72 xxx
Roseanne72
Member

Re: Any triple negative survivors out there?

Hi Colista, I've not been on here in a while and I see a few women have requested to be added to the TNBC fb page, could you possibly add me too please. Thanks very much 😊Roseanne
rachelirwin
Member

Re: Any triple negative survivors out there?

Could I be Added Rachel Irwin (pic of me and my son crying with a dino!)

rachelirwin
Member

Re: Any triple negative survivors out there?

Could I join too?  Thanks

Warcol
Member

Re: Any triple negative survivors out there?

Hi Pam
Thank you and don't back at ya! I said to my oncologist once I'm free after 5 years I hope never to see her again! She said likewise xx
Whitfield
Member

Re: Any triple negative survivors out there?

I'm just dipping in and out of the FB forum.  I'm just so shocked there are so many of us.  Look after yourself and keep an eye on your skin.  Rad sessions are quick but it is tiring.  Once you've finished the rads your done so this is the final hurdle in this treatment.  I really hope both for you and me we only have to do this once but we are strong.

 

pam x

Warcol
Member

Re: Any triple negative survivors out there?

Hi pam

i will deffo be drinking the water. We can swop experiences! How u finding the FB forum?

colista xx

Whitfield
Member

Re: Any triple negative survivors out there?

Same amount as me.  Do keep up the drinking water if you can.

 

px

Warcol
Member

Re: Any triple negative survivors out there?

Hi Pam
Having 20! 15 to everything and then 5 just to where the tumour was xx thank you xx
Whitfield
Member

Re: Any triple negative survivors out there?

Hello Colista,

 

I was Recommended to drink 3 litres of water per day to help skin from breakdown.  Good luck.  How many you having?

 

pam x

Taran
Member

Re: Any triple negative survivors out there?

Hi Colista, I am going to friend request you too for an add to the group if that's ok. Thank you x
Warcol
Member

Re: Any triple negative survivors out there?

Hi everyone

happy Saturday to you all. Hope everyone is well as could be expected. I'm due to start rads shortly and am making the most of feeling well and refreshed before the tiredness kicks in lol. Xx Colista xx

 

 

 

Warcol
Member

Re: Any triple negative survivors out there?

Molly

are you uk based and if so add me as a friend on fb Colista gaskin and I'll take it from there. Also provide a brief history I.e when dx and where u are in terms of treatment etc xxx

Mollie136
Member

Re: Any triple negative survivors out there?

Thank you!
Mollie136
Member

Re: Any triple negative survivors out there?

I am new, I would like to FB too!

Warcol
Member

Re: Any triple negative survivors out there?

Hi
I've added Jeanette, Chris and Pam so far to the FB page, is there anyone else lol
Hope u all get the support you need but feel
Free to message me anytime as we're all in this together!
Have a great day everyone xx
Colista. X
suzanne2
Member

Re: Any triple negative survivors out there?

Hi all hope you are all doing ok, Pam thank you for accepting my friend request on Facebook xxxxx
ChrisAsh
Member

Re: Any triple negative survivors out there?

Cheers Colista, friend request sent now 

xx

Warcol
Member

Re: Any triple negative survivors out there?

Hi Chris
You may not have found me due to my privacy settings but I've changed this temp so u can now find me and add me
Xxx
netti37
Member

Re: Any triple negative survivors out there?

Could I join tnbc fb group too please xx
ChrisAsh
Member

Re: Any triple negative survivors out there?

Mmm this isn't going well - can't find you so will look properly later x
Warcol
Member

Re: Any triple negative survivors out there?

Chris what's your profile pic as there's quite a few Chris ashworths coming up! It may be easier to add me as a friend as there's no-one with my name lol! Look for Colista Gaskin...you too Pam xxxx
Warcol
Member

Re: Any triple negative survivors out there?

Pam what's your full name on Facebook? Chris I'll try and find you on FB and add as a friend first then add you to TNBC group as well as a BC group xx
Whitfield
Member

Re: Any triple negative survivors out there?

Hello colista,

 

My diagnosis was very similar to yours 31mm tumour with nodes involved.  Chemo first EC-T then lump removal and node clearance.  Four nodes shows signs of cancer but crylistalised due to chemo.  24 removed and four affected.  20 rads and CPR.  It's hard but great to read your positive post.

 

Pam X

ChrisAsh
Member

Re: Any triple negative survivors out there?

Hi Colista

yes would really like to join the Fb group but can't figure out how to pm you? Can you let me know when you get a moment.  On Facebook as Chris Ashworth ( very unoriginal that!) 

thanks xx

Whitfield
Member

Re: Any triple negative survivors out there?

Warcol,

 

could i I also join the TNBC. FB group.  

 

Pamx

 

thanks for the research.

Warcol
Member

Re: Any triple negative survivors out there?

Chris
Your more than welcome! There is a TNBC Facebook closed group if you wish to be added to this! If you do send me a private message amethyst your full name and if ur on Facebook and I'll get you added xx Colista xx
ChrisAsh
Member

Re: Any triple negative survivors out there?

Hi Colista

 I could literally hug you for posting this and your other lengthy post about the more positive side of TNBC. It's absolutely what I need today having spent a lot of time getting myself into a tail spin of 'what if's'. 

Im so pleased that you managed to get a pcr during your treatment and you've given me hope that I can achieve this too. Thank you more than you will ever know.

 Chris xxxx

1852
Member

Re: Any triple negative survivors out there?

Wow warcol what an informative post very positive and encouraging for all us with TNBC we all have to remain positive and look to the future best wishes to all hope all doing ok DEN X

Warcol
Member

Re: Any triple negative survivors out there?

chris

I'm on an American TNBC site and a lovely lady had posted this today (sorry admin if not allowed)

Positive outcomes for TNBC

I am currently a stay at home mother of 5 children ~ I was diagnosed with TNBC and achieved a PCR following my bilateral mastectomy and only receiving 31% of my prescribed chemo treatments, (being ultra sensitive) and responding so well I chose to investigate this disease and arrive all facts, long term studies and all positive medical perspectives available so I could help others.

We are all individuals and unique on this journey, however we are all also sisters in this disease, and I am determined to gather all positive studies and silver linings I can arrive with and share them to ease fear.
We are individuals and have many variables, however it is important to know the vast majority of TNBC is chemo sensitive and do have good out comes~

I have studied UK, Canada,US, and San Antonio TNBC annual meeting as well many long term studies. Here is a synopsis and its sources below. It is imperative we remember TNBC is a very survivable disease and unlike Her 2 positive our risk margins mirror closely then drop considerably in 3 years. In 5 years I'm told by an oncologist the risk is a 2% over my entire life span (so divide 30-40 remaining years into 2% and it is almost untraceable. In light of those who don't consider TNBC to be cured, many oncologist would disagree. Your risk are greater to have a unforeseen life event (car accident for example) than a recurrence after 5 years.
I also would like to add , I have the privilege to personaly know three remarkably strong stage IV women who are thriving years later with stable disease, living a high quality life of normalcy and 21st century treatments and medications are enabling them to watch their children grow .

My findings and references are below

TNBC is very chemo-sensitive and the majority of patients confronted with and treated for TNBC will never relapse.
TNBCs had excellent outcomes even in the absence of adjuvant chemotherapy, and on reviewing the literature they found a 3% breast cancer specific death rate and frequently carry a good prognosis
High radiosensitivy was suggested (7% of the patients had a complete response during chemotherapy had no effect on the rate of recurrence or survival (6-year local recurrence-free survival, metastasis-free survival, and survival rates were 86%, 83%, and 83%, respectively)

references
The joint American Society of Clinical Oncology, and College of American Pathologist
Womens Health. 2013

Recent analysis from a large number of TNBCs from 21 independent studies

TNBC is more sensitive to chemotherapy. The rate of pathological complete remission (PCR) after neoadjuvant chemotherapy is higher than in other breast cancer subtypes
Although it sounds frightening, the fast growth rate means that standard chemotherapy's have a good chance of inducing remission.TNBC has a much better response to conventional chemotherapy than other breast cancer subtypes. It’s important to remember that most people with TNBC don’t have a metastatic recurrence.
The story of progress in beating TNBC is a testament to decades of painstaking work by researchers around the world. Nearly eight in 10 women diagnosed today will still be going strong ten years later, compared to around half that number back in the 1970s.
The risk of recurrence drops significantly in 3 years, when a woman survives five years without a recurrence, her chances of survival are extremely high.. A woman who has been successfully
treated for TNBC and is disease-free 5 or more years has almost no risk of having the cancer come back.
This is good news for five-year survivors and makes this milestone especially important for women diagnosed with triple negative breast cancer.
I think the message is triple negative breast cancer accounts for between 10 to 15 percent of all breast cancers. We haven't solved this problem yet, but it's also not a death sentence. The majority of women with triple negative breast cancers are -- thankfully -- cured and survive. Triple negative cancer is something that if it has not come back by the five-year mark, you are almost certainly are cured of it.

references
TNBCF co-founder and executive director Hayley Dinerman

Most women with triple-negative breast cancer never have a metastatic recurrence or a new cancer.
After 3 years the chance of recurrence of TNBC is reduced by 50%.
With each year after the 3 year mark the chance of recurrence is reduced by an additional 10%-15%.
Long term survivors (longer than 5 years) have almost a 0% rate that the disease will recur. With other breast cancers the recurrence rate climbs after the first 5 years.

One 2013 study reported that women with stage III triple negative disease are vulnerable to metastasis during the first two to five years after diagnosis. The cumulative incidence of metastases at five years was 9.6% among patients with stage III disease, compared to 2.8% for stage I and 4.6% for stage II.
(In other words you have a 90.6% to not have metastasis)

references
American Society of Clinical Oncology
SABCS

Triple-negative breast cancer has caught the attention of major researchers throughout the world, which is a great thing—it means that we are learning more and more about how to prevent and treat this illness
let’s look at some of the data and what they mean. And rather than simply accepting the gloomy picture that is often presented, let’s approach this in the enterprising spirit of yeah, but….

It is true that hormone-negative breast cancers can be more aggressive than hormone-positive. But the majority of women who get the disease survive.

It is true that most cases of recurrence come within the first three years.But that means that those who hit five years are looking at an excellent prognosis. A better long-term prognosis, in fact, than those with hormone-positive.

It is true that triple-negative is more likely to have spread to the lymph nodes. But many women with TNBC have no positive nodes—and, if they do, they still beat the disease and survive.

Here are more positives:

Your tumor responds better to chemotherapy than tumors that are estrogen and progesterone positive. Chemo works better on you.

If you remain disease free for four or more years the chances are your cancer will not EVER return.

You do not have to take endocrine therapy drugs that have a whole host of side effects that are not pleasant.

And there is emerging research every day into this type of breast cancer that is making the “poor prognosis” moniker a thing of the past.

The following is an up to the minute report on the latest trends and breakthroughs in Triple Negative treatment. You will see that there is a tremendous amount of HOPE.

Please do not despair with this diagnosis. It CAN be beaten.

Studies have demonstrated that triple negative disease exhibits a unique recurrence pattern and that not only is there a very sharp decline in recurrence risk of triple negative disease after the fourth year post-diagnosis, but that the risk of distant recurrence falls to absolute zero! - unheard of in any other type of breast cancer - from five years and after (and is in any event extremely small, almost negligible, even from five years forward), and in addition, although local recurrence is a risk factor for later distant recurrence among women with all other types of breast carcinomas, this does NOT hold true for triple-negative tumors it was found that any local recurrence in triple negative disease is not associated with increased metastatic risk.

reference

Oncology Investigators
No Surrender Breast Cancer Foundation

I have learned to turn statistics around and to always have a positive perspective. For example, when research says that 20 percent of the women with triple negative died in a particular study, I turn this around and realize that 80 percent of the women survived. And if, in another study, a triple-negative woman faces twice the risk increased risk of death compared with hormone-positive, I look at the fact that the difference is between a 10 percent risk of and a 20 percent risk. And, while they are decreased odds , they still mean an 80 percent chance of not dying. Even starting with a poorer prognosis, the odds can still be with you. TNBC is a very survivable disease and has many blessings associated such as being considered cured and not looking over our shoulders in 5 years. Personality I feel everyday I'm cancer free I am already cured,however I will breath another sigh of relief at my 3 year anniversary milestone.

God has blessed me and I pray for you and your family to have many blessings also~

I hope this has helped ease some doubts and fears and help place a positive outlook on your journeys to concur TNBC!

Warcol
Member

Re: Any triple negative survivors out there?

Hi ChrisAsh

i finished chemo (Fec-T) on 18th July followed by lumpectomy on 17th August! I had a near pcr to the chemo and following surgery am now cancer free! My tumour was 3.8cm and multiple node infection yet when nodes were removed (8) all were clear! I'm now due 20 rads so hang on in there! TN is chemo sensitive so 🙏 It's doing its trick for you as well. I'll post a blog from another site on here shortly to give you some food for thought and hopefully lift your spirits.

On another positive I was speaking to a lady last night who is 10 years post TN dx so it's not all doom and gloom for us xx stay strong xx Colista

ChrisAsh
Member

Re: Any triple negative survivors out there?

Hello everybody

i haven't been on the thread for a while as coping with diagnosis ( July 2016) and then start of treatment but your words of support were a lie feline to me in the very early days when I felt that I was drowning in fear.

i hope everyone is doing well with the various stages of their treatment / progress . I am having chemo first as my lump was approx 4cm. I've had EC x 3 ( just finished third dose) and then will have 9 weekly doses of paclitaxel and carboplatin. I know that the aim of this is to try to shrink the tumour and better still get a complete pathological response but I'm looking for some words of encouragement about how quickly this happens? As I said I've just finished my 3rd EC and my lump doesn't feel to have shrunk very much at all. In fact some days I think it's bigger. Plus my lump / axilla are sometimes painful. I discussed this with my onc last week and he says on examination it feels smaller and so is happy to continue with the plan whilst the pain may be caused by invading white cells doing their job. Whilst I desperately want to believe this I have a nagging doubt in my head that the chemo isn't going to work 😔. Can anyone else share their story about how they responded and whether it took a while for the lump to shrink

thank you so much ladies

take care 

chris xx

bel
Member

Re: Any triple negative survivors out there?

I hope everyone is doing well. I know a few of you were asking about food. Someone I know, who had BC a couple of years ago, has been raving about a cookbook called The Cancer Fighting Kitchen by Rebecca Katz, in case anyone is interested in checking it out. The author is from the US, but you can get it on amazon here. According to the person I know the recipes are delicious, but also pretty simple & accessible. There's also quite a lot of info on good nutrition in it.

Love to all 

Bel x

1852
Member

Re: Any triple negative survivors out there?

Oh pam bet falling gave you a shock hope you aren't in too much pain . Hope your sister ok I don't think I will be having op for mine . You are right I did have bowel polyp one with cancer but I don't think that's anything connected with this . Take care DEN

Whitfield
Member

Re: Any triple negative survivors out there?

Thanks Den.  I'm sure full removal is worse.  Just the heat getting to me and these awful sports bras which straps show all the time.  It seems bras for breast lymphodeam are very expensive around £70 per bra and they're no better than what I'm wearing.

 

My sister just had hiatus herna op which went well but her bowel was white and flaky so a 1 hour op turned into a five hours op with some sort of bypass.  I'm not sure exactly what was done but she was in hospital for five days in Portsmouth which a a long way from me.  She's on the mend and home now.  Good they're doing the biopsy first so they can check this sort of thing.  I hope the op if you have it goes smoothly and your bowel is okay.  I recall you had polyps so it's probably all connected.  You've had enough to deal with.  

 

Im still waiting for pain management as underarm give a lot of pain in the evening and yesterday I fell backwards and hurt my arm.  I was so worried I would get odema on the arm all day.  But it seems okay.  Head and hip took a bash but they will recover.  See I love gardening and was way to far in the bushes standing on a log and then it rolled forward and I went backwards onto the stone path! 

 

Sending love.

 

pam x

1852
Member

Re: Any triple negative survivors out there?

Hi pam I have been having a lot of epigastric problems went today I have small hiatus hernia  and he says taken a biopsy to eliminate coeliac disease. I can't help with stats I didn't ever get any for myself I personally don't want to know mine but it's up to individual and if you want to know then I hope you get some answers  . In rega d to whether if having a mastectomy would have been better again I can only answer for my experience I have swelling ng where breast used to be and its very tight  prosthesis is uncomfy when I have wore it all day I have been told by bc nurse and dr it's not everyone who gets flat scar if you remember I had a lot of seroma don't know if that as anything to do with it . Hubby ok thanks hope yours is too take care DEN XX

Whitfield
Member

Re: Any triple negative survivors out there?

Hello Den, hope the Gastro things goes well. What's this for?

im just waiting but think it's gonna be okay as I had an email from the BC nurse and she mentioned my a
point ENT for 2017 has been booked and they wouldn't do that if this one was okay! Thing is at the Royal Marsden they don't book you in to see a doctor and I wanted to talk abou my breast odeama. If the breast was removed would I still have this?? It's been very hard wearing a very tight bra with additional sponge padding in bra 24/7 during the heat. What she said in email was that even if breast was removed then I may still have the odeama! Lady parts playing up again and still having pain which is mainly at night. Both in hand post op and where the nodes were removed. I suppose we have to accept all of this.

i also wanted to know where I was in the time frame re stats as RM doesn't give you the percentage survival figure, nor do they tell you where you are re remission. Apparently this depends on what is the the criteria of the stats. Some run from diagnoisis and some from surgery. But as I had chemo first and this was a full pathology response I'm taking the end date as this is when I feel I was cancer free - so Feb 15. That said the BC nurse said it was from diagnosise - August 14 which takes me to two years. So if you use mi e I'm 18 months or thereabouts and hospitals 2 yrs. it's very important as I have read reoccurrence for TNBC is really high in the first two years then it starts to slid. I think I'm getting too into it but it's on my mind.

Ehat are your thoughts on timeline and a stats. Have your hospital said where you are and when you count from?

hope hubby is well?

pam x

Whitfield
Member

Re: Any triple negative survivors out there?

Hello Den,  hope the Gastro things goes well.  What's this for?

 

im just waiting but think it's gonna be okay as I had an email from the BC nurse and she mentioned my a

point ENT for 2017 has been booked and they wouldn't do that if this one was okay!  Thing is at the Royal Marsden they don't book you in to see a doctor and I wanted to talk abou my breast odeama.  If the breast was removed would I still have this?? It's been very hard wearing a very tight bra with additional sponge padding in bra 24/7 during the heat.  What she said in email was that even if breast was removed then I may still have the odeama!  Lady parts playing up again and still having pain which is mainly at night.  Both in hand post op and where the nodes were removed.   I suppose we have to accept all of this.

 

i also wanted to know where I was in the time frame re stats as RM doesn't give you the percentage survival figure, nor do they tell you where you are re remission.  Apparently this depends on what is the the criteria of the stats.  Some run from diagnoisis and some from surgery.  But as I had chemo first and this was a full pathology response I'm taking the end date as this is when I feel I was cancer free - so Feb 15.  That said the BC nurse said it was from diagnosise - August 14 which takes me to two years.  So if you use mi e I'm 18 months or thereabouts and hospitals 2 yrs.  it's very important as I have read reoccurrence for TNBC is really high in the first two years then it starts to slid.  I think I'm getting too into it but it's on my mind.

 

Ehat are your thoughts on timeline and a stats.  Have your hospital said where you are and when you count from?

 

hope hubby is well?

 

pam x

 

1852
Member

Re: Any triple negative survivors out there?

Hope your mood has lifted today pam waiting is the pits isn't it I waited more or less 4weeks for my result but must admit as I've said before I found lumps myself so don't worry too much re mammogram . I saw breast surgeon last week he gave me a quick examination asked when I was onc next year and said make appt for year after that so that will be 2018 l can contact breast nurse if any worries before that so waited an hour to see him for all of 2mins but at least I'm here to see him got gastroscopy this week not looking forward to it hope all ok DEN X

Whitfield
Member

Re: Any triple negative survivors out there?

Thanks all.

 

mamo last week so have to wait.  Jinney was on this thread I think and Bumpkin on Sept 14 chemo, or the other way around.  Just when you hear people you converse with dying of this decease it's hard.  For some reason it's just hit me.  I did speak with both on this site and it makes you realise you are mortal.

 

maybe tomorrow will be a better day.

 

Thank you for your support.

 

pam X

Marina
Member

Re: Any triple negative survivors out there?

Wow Suzanne2 that is awful, poor you. Take good care of yourself and well done for the job.

Chin up Pam, tomorrow will be better I'm sure. Don't recognize the names you mention. Were they on a diff thread?
Marina
suzanne2
Member

Re: Any triple negative survivors out there?

Aww Pam we all have those days I think it's part of it. When did u have your mammogram xx
Whitfield
Member

Re: Any triple negative survivors out there?

I'm having a blue day.  Not sure why but there you go.  Waiting for mamo results and feeling a bit scared.  Just realised Bumpkin and Jinney have passed and feeling sad.  Pam 

Warcol
Member

Re: Any triple negative survivors out there?

Hi Suzanne that's terrible but I really believe when our time is up its up and u were meant to survive and will continue for a long time 💕 Hope u don't get too much pain from it xxx
Whitfield
Member

Re: Any triple negative survivors out there?

As if you havent enough to deal with Suzanne.  Hope you recover quickly.  I think there is some compensation scheme run by the government for just this sort of thing - e.g. uninsured drivers. 

 

Pam x

1852
Member

Re: Any triple negative survivors out there?

Hi Suzanne what a frightening thing to happen hope neck and shoulder not too painful  . It makes you realise how quickly things in your lane fe can change just like cancer does I think . Take care DEN 

suzanne2
Member

Re: Any triple negative survivors out there?

Hi all hope u are all keeping ok? I've had one hell of a week, I thought my life was coming to a dramatic end on Wednesday evening as I was involved in a car accident. I was driving home when a driver on the opposite side of the road decided to speed and overtake the cars in front of him, resulting in a head on crash with me. I thought that was it as there was no where I could go to escape him, BANG!!!! I was just sat there totally stunned and in pain with my neck and shoulder where the seatbelt was. To cut a long story short he asked was I ok and then fled the scene still not found, car wasn't his no insurance, and there was drink and cocaine in the car. I am upset, angry, stiff and sore. My car was written off!!! To end the week I got a job I applied for love to u all xxxxx
bel
Member

Re: Any triple negative survivors out there?

Hi marina,
I'm really glad I can be of help to you 🙂
Goodness, poor you re it coming back during chemo. Wishing you all the best with the results. My tumour was initially diagnosed as a harmless cyst too.

Sounds like you're doing amazingly with the food! If you're worried you're losing too much weight try and add in plenty of healthy fats like extra virgin (uncooked) olive oil, avocados, seeds, unroasted nuts (I think almonds are especially good & peanuts not so good) to your diet, as these are all healing foods.

I have a cold press juicer & a blender. I use the blender for smoothies & soups. I'm not sure what the answer is re juicing: carrots & beetroots are quite high in sugar, which is not so good, but they are also high in lots of good (and anticancerous) stuff too. Eg, the Gerson therapy, which is a very extreme anti cancer programme does have carrot juice as part of its protocol. My approach has been to include some carrots & beets in my juices, but not to overdo them, and to also have plenty of green stuff in my juices too.
Bel X

Marina
Member

Re: Any triple negative survivors out there?

Thanks Bel, you are helping me so much mentally, your story is so positive and encouraging.

My cancer came back during chemo (after having had lumpectomy) . They thought they were just cysts so didn´t take clear margins so had to be operated again, a total of 3 ops. Now waiting for results to see if it was the first tumour (although had clear margins!!????) or recurrence.

 

Have found your old post and am eating very healthily and have actually lost a lot of weight and can´t afford to lose anymore. Given up meat completely, and only eat fish when I go out. Given up sugar completely and all processed food, and only eat rye or spelt bread occacionally. Lots of pulses, veg and fruit. Do enjoy a larger or two and rain wine when I go out.

 

I do juice but after reading about others on Internet I am a little confused as to whether I should be juicing carrots or greens. Bel do you use a cold press juicer or blender type?

 

Thanks for your time and support.

Marina

bel
Member

Re: Any triple negative survivors out there?

Hi marina, I did change my diet & take supplements. I posted about that on this thread maybe a couple of months ago, so scroll back & you should see it. Do ask if you've any additional questions though - happy to try & help.

Back in my day they didn't make a big thing about triple neg, which is why I never thought myself any different to any other BC patient. The pathology just stated that everything was neg & I was told I could not take tamoxifen (which I was actually relieved about as I hate taking drugs).
bel X