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September Sunbeams 2014

Whitfield
Member

Re: September Sunbeams 2014

Oh PaulS you have had it really hard. My father had a congenital heart problem which is why I have bundle branch block. No must not blame yourself for all of this as it's not of your choosing.

Den - hope you get the all clear.

Having Kittens - I've had the braca gene test. Are there other tests? Hope you are negative. I was.

Love to all.

Px
PaulS
Member

Re: September Sunbeams 2014

Thanks everyone. 

1852 - good luck on Friday. I know what you mean though, we come to expect the worst news don't we.  But, I have had two (unrelated) investigations over the past weeks (a heart issue and a pituitary issue) and I realised I was completely expecting bad news, so when both consultants said everything was fine I was actually surprised.  When I said to one - 'that's great news', he actually said that I was saying the words but he wasn't feeling it from me.  I told him I had been preparing myself for bad news and more treatments.  I spoke with the counsellor at Maggie's about this and she said it was completely normal to respond like that as our bodies have let us down.  But, as time passes we will hopefully begin to feel more confident again.  She told me that a thought (fear) is not a fact - and to keep saying that to myself until I actually know the facts.

I also learned something with the heart investigations that made me feel incredibly sad and overwhelmed.  I had two daughters, and both were born with heart conditions, though different ones.  My first child died.  The heart consultant told me that I had a minor congenital abnormality (which needed no treatment) which was probably 'related' to the condition my first child had, but in her it was much more serious.  So, I learned all these years later that I probably (possibly?) unknowlingly passed this on to her.   Had I known this, would I have gone ahead and had children?

Havingkittens - look after yourself.

I'm still working full time but I'm knackered and often in bed really quite early. But, still do running every day (up to 7k now) and plan to do the 10k. I go on annual leave on Friday 4th July for three weeks and SO looking forward to it.

Have a great day Sunbeams. P xx

Nutty75
Member

Re: September Sunbeams 2014

I had gene testing done in December (thankfully no nasty genes for me) I had to be referred by my doctor and not the hospital which I thought was strange . I had already opted for a double mx so the results wouldn't have changed my mind what op I was having. I felt I needed to know if I was a carrier as I have three daughters. Good luck with yours Anna xx
Havingkittens
Member

Re: September Sunbeams 2014

Ah that's better, you are back with us PaulS! So pleased! and champion fundraising by you and your mates, that is amazing.

Den - hope you are not too stressed about painful boob, glad you have an appointment soon. Let us know how you get on, what a worry.

Went with my daughter to family history clinic (she was referred by GP). It was an emotional appointment, but good to meet another consultant surgeon. Her message was that it's very important to reduce stress levels and work on wellbeing. She's not saying that stress CAUSES breast cancer, of course it doesn't, but stress can compromise the immune system, and as PaulS says, this is not good. That's an important message - we absolutely need to enjoy ourselves. Exercise, laugh, grow courgettes, eat delicious  things, knit horrid blankets, see friends....anything that floats your boat and makes us happy. I need to get a gene test done, to see if I'm carrying anything nasty ... am relly keen to get on with it now, hope my clinic refers me, it has to be done at a large centre, we are too small here. Anyone else doing the gene testing? We are all coming up to the one year mark. Aren't we amazing?? Good luck everyone with upcoming appointments, mine's in July. Lots of love, and great to see you back PaulS. XXXXX

Whitfield
Member

Re: September Sunbeams 2014

Glad you are back with us PaulS. Really missed your informative posts.

Stay positive ladies and speak later.

Pam x
Nutty75
Member

Re: September Sunbeams 2014

Good to see you back PaulS - well done on the money you raised 😃 Fingers crossed for you Den - I think after what we've been through any thing sends our minds worrying - I wish I could stop mine. I seem to be knackered all the time - can't stay up much passed 9 o'clock😳. Take care everyone xx
1852
Member

Re: September Sunbeams 2014

Glad you are back PaulS well done to you all raising that amount I think you should give money to whatever you want and I think we have all benefited from therapy which has and continues to help us and they need supporting . Usually our immune system can control cancer cells but if our immune system is compromised by varied reasons then immune system can't control cancer cancers cells then multiply and clump together causing tumours i got this explanation from penny brohn video which was shown at some information days I attended. I have had my appt to see surgeon brought forward as I have very painful remaining boob and as tumours found on other boob were found following painful boob am a little concerned going Friday aft so fingers crossed hope everyone ok xxDEN
sampeds
Member

Re: September Sunbeams 2014

Wow Paul's that's amazing fundraising!! I like the idea of it going to Macmillan and your local Maggies,, it's a great way of giving back!!

I'm off to bed now, oh to not feel so tired lol,, so good to have you back where you belong!!! Lots of love to you all xxx Sam 💗💗💗
PaulS
Member

Re: September Sunbeams 2014

Hi Sunbeams,

I'm still here ... and thank you so much for all your lovely messages.  I suspect that we have all learned a lot and hopefully none of us is too bruised and battered.  Anna is of course absolutely right - none of us would ever intentionally set out to hurt another contributor to the forum, and with the BC we have all shown that we are strong and resilient enough to cope when things get tough, as indeed they have with us this last week.  I have realised as the days passed that I missed checking in with you - I have so valued your support and encouragement and humour and sheer and dogged determination to get on with it.

So, node involvement.

I had an appointment with my oncologist last week (and with the counseller who helped me enormously) and I asked him again about node involvement.  He repeated what he told me the first time - they remove the nodes if they find cancerous cells in the sentinel nodes. But, this is considered local spread, and it is cancerous cells, not tumours. It is part of the function of nodes to catch things - infections etc - so they are doing their jobs!  Apparently we all have cells that have the potential to develop into tumours, but for reasons that they don't yet fully understand some do and some don't.  The chemo and radiotherapy in such cases are to ensure that any 'little bu**ers' (his words) that may have escaped are neuked (his words).  I asked why I had radiotherapy on the breast, and the collar bone, and not where the nodes were removed, and he said they don't usually need to do where the nodes were removed as there is nothing left there to develop into a tumour.  They apparently check to see if anything has leaked out into surrounding tissue when we are under anesthetic, and if not then no radiotherapy is required there. So, it is of course better if there is no node involvement, but it is not a disaster (his words) if there is. So many other things determine long term prognosis.

Friday night was great!  We raised £1000, and I think we will give half to Macmillan for complementary therapeutic sessions (I had massages and they were great!) and half to Maggie's Centre (not for general fundraising, but to support our local one with the free sessions and the invaluable support and counselling they offer).  What do you think?  Apparently if we donate through Just Giving we get tax relief, about another £200, but it goes into the general pot and is not targetted to what I had wanted to support.  But I am open to persuasion.

Ladies - I hope you are doing well back at work, and with resuming normal life as much as you are able to.

Take care.

P xx

 

Anna_BCC
Member

Re: September Sunbeams 2014

Dear Everyone

 

The video by Holley Kitchen, explaining how it is for her living with secondary breast cancer, has generated a wide ranging discussion with people airing and sharing their individual views, which everyone is entitled to have. However, sadly many people have been hurt and upset by some posts and I urge and ask you all to be mindful when writing and posting. Before posting please read carefully what you have written and think about how someone else may read and interpret the words. Everyone should have the choice regarding the information they read or seek and I ask everyone to respect the views of any individual about their own choices. As I have said before, no one size fits all! I am not directing these comments to any particular individuals but asking you all, as part of a shared supportive community, to carefully consider how you are writing and also how you are reading posts. Things can be said unintentionally and also read in a way that was never intended. I don’t believe anyone wishes to deliberately hurt another.

 

This community has so much to offer each other whatever the stage of the breast cancer journey and you are all valuable members of the forum. I thank each of you for the support you provide each other and sincerely hope that you all continue to do so empathically and from the unique position of having breast cancer and therefore sharing an experience which no one else could understand unless they have been there.

 

With best wishes

Anna

Digital Community Officer

Havingkittens
Member

Re: September Sunbeams 2014

Hello Sunbeams, so good to read your posts, you pulled me up again - as you always do... off to the family history clinic tomorrow with my eldest daughter, such a stressful time. We are ready to get on with genetic testing now. Gonna take head out of sand and get the facts. PaulS - do come back, I miss your wise and kind words. Lou, how lucky your son is to have such a caring mamma and so sorry to hear that your own mum is terminally ill, that is just a crock of sh** as they say. Love to all of you, let's keep on posting, Anna  

1852
Member

Re: September Sunbeams 2014

Sam glad you enjoyed pizza we had grandkids yesterday we had cooked 3 large pizza,s garlic bread and curly fries when I got to table very little left couldn't believe it hubby only managed 2pieces would care but they are only 6. 3 3and 4th one only on bottles as yet my son as been training under 11s rugby team first match today they lost by one point but he was so proud of them he said he had to stop himself from crying (bless) he is 6ft 4ins and served in iraq but these little ones brought him near to tears
Pam we are trying to decide what to do for our 40th in sept we want to go away we will see if hubby as had op !! My hair is still growing slow but everyone says it looks ok
Lou hope brown bag stays in bin
Hope you ok PaulS please keep posting when you ready
Anna and ness char101 hope you all ok
Nice of Murphy and kim68to get in touch xDEN
Lovewine
Member

Re: September Sunbeams 2014

Hello ladies, i am from the April 2014 thread and have followed your lovely group since you started as you are very similar to our kind, supportive ladies, i just wanted to wish you all the very best. Also all ladies on every part of the forum my thoughts are with you all.
1852
Member

Re: September Sunbeams 2014

hi everyone lets hope this week can now be put to bed . We all cope in our own ways I know this last year would have been a lot harder if I had not had you all to moan to and I am aware at times I did plenty of that but I have also felt like you was my extended family who was always there when close family were too near if you know what I mean I am not on face book and would rather stay on forum so we can help others with our posts as others before us did for us we are all going through this crap in our own ways just like everyone goes through life in their own ways love to all DEN x
Jobey68
Member

Re: September Sunbeams 2014

Me too, have thrown myself back in to the real world with a new love for it! My lovely ( and extremely handsome hubby!!) has booked us a week away in Menorca to celebrate the end of treatment plus it's our 23rd wedding anniversary next month so lots to be thankful for 😊😊 Dorset isn't far from us by the way and a beautiful part of the country, we were down that way last weekend in Paignton, have a lovely time xx
Whitfield
Member

Re: September Sunbeams 2014

Went to first party after treatment has ended and saw a lot of people who I hadn't seen since being diagnosed. Lots of hair compliments which was really uplifting. Hoping to get sign off back to work for next week and pushing forward. I'm fully aware of what may happen and will keep a,check on things but other than that it's out of my hands. So my intentions is to get as much out of life as possible.

20th wedding anniversary coming up and holiday in Dorset. Sitting here listening to radio looking at extremely handsome lovely husband and counting my lucky stars.

I'm hoping we hear from PaulS soon as I really don't want to lose any of the September ladies as you have helped me through hell.

Pam xx
Jobey68
Member

Re: September Sunbeams 2014 - please can we all stay on the group?

Thank you Pam, I view everything on here as much needed information and love how we are all able to share our thoughts, worries and journeys with each other and to see people getting annoyed with others is heartbreaking considering what we are all going through, we all need to stick together ladies and get each other through all of this! Xx
Whitfield
Member

Re: September Sunbeams 2014 - please can we all stay on the group?

Kim68 - Never feel guilty about your status. We all want everyone to pull through so it's nice to hear from people who have caught this horrid decease early. Those of us with node involvement will take our paths and be happy for those who managed to avoid the more challenging route. We have to be grateful that we are all. Wing treated and some will be better placed to recover and cope.

Remember we need good stories as well as the hard ones and we need to keep posting supporting each other.

Pam x
sampeds
Member

Re: September Sunbeams 2014

Roger that Lou! We'll do our best!! ☺️🍷🙋🏼xxx
Lou79
Member

Re: September Sunbeams 2014

P.s. I hope you all drink too much and have some fun antics to share 😄 xxx
Lou79
Member

Re: September Sunbeams 2014

Hey Sam!! 😄
Thanks so much! I've given myself a slap, put the brown bag for deep breathing in the bin! This has been my worst week! Keep getting completely panicked, think is coming to terms with it all in a weird way...
I've always been adament I won't leave him, but I'm thankful I have him or there would be no reason to try or want to stay.
So time for bit of cheesy music "shake it off"...
Now what shall I plump up my bum with for tea later 😉 xxxxx
sampeds
Member

Re: September Sunbeams 2014

Well Lou I was just going to go into detail about a cracking pizza I had on Friday night, spicy beef, jalapeños etc,, then your second post came up and I got waylaid 😜,,,, some may think my attitude is blasé, and that's fine by me, but I can assure you it's not, having lost my little sis to sbc 6 years ago next week I'm well aware of what could maybe happen, but I tend to think about what probably won't happen, no one has the exact day we are going to leave this funny little planet, and obsessing and worrying about how, when and where it will be is a complete and utter waste of life, so I refuse to do it,, as I've said many times before I really will probably end up croaking it with my husband driving, who's to say what family and friends will go first, second, last!! We just don't know, so try and chill a bit and read a book before sleep,, have a large pizza, glass or 2 of vino and relax,, ooh and I'm having lunch with the girls tomorrow so I'll let you know what I had after 😘😘😘 xxx Sam
Lou79
Member

Re: September Sunbeams 2014

Also...I do agree with the burying my head in the sand comment . ...
But then I think, what use am I to anyone in this state?
I go to bed and think, pray for a realistic age to leave my son, what age can a boy cope with no one? My mum is terminally I'll, who will look out for him? He'll be too old to be in the system, but be left alone. I know I'm high risk, had cancer in lymph nodes, family history of cancer, how do you look at your little man and know you are probably going to leave them here alone in the next few years...
Lou79
Member

Re: September Sunbeams 2014

I'm feeling so guilty right now!!
You know cancer can happen to anyone! We all come from different walks of life with a whole different bag of life experience and characteristics...
I have my own 'characteristics' that I've always had, I have to work on many things personally to make me a better person. So,I find it hard to plan ahead, organise my thoughts, well I find it hard to organise lots of things...I'm slightly dyslexic, would definitely be on the spectrum...I enjoyed coming here in a relaxed context, not worrying about spelling, grammar and would just type as I thought... Often I'd come just to share my day if I was feeling lonely
Life is about learning and I was perhaps a bit naive, but I've realised this group isn't as small as I thought and I have learnt how others with different experiences feel. I apologised and it was genuine. I'd be happy to leave it here. I feel awful that someone is so upset for just offering support and is now maybe feeling awkward, bad, lonely and probably has that sick feeling in their stomach each time your phone beeps wondering what comment is posted now.
I'm a bit of an idiot at times and should think more! Lesson learnt, but please someone just post and tell me about a night out, pizza they had etc..before my guts are completely eaten with guilt!! 😉 lol
Xxx
Murphy1963
Member

Re: September Sunbeams 2014

Hi, Murphy here again from the October 14 group. I am getting more and more angry and upset as the days are going on. This has been blown up out of all proportion, when one sunbeam was simply trying to support another sunbeam, nothing more and nothing less. I am astonished that this has grown arms and legs, and has resulted in a them and us scenario. As Pam said, we all cope differently, some ladies want all the information that they can get their hands on, other ladies can only deal with the here and now. It is completely an individual choice what information we want to take on board and what information we don't want.

I and probably most ladies, was told on my very first visit by my bcn NOT to google, NOT to read/look at stuff except from reputable sites eg, BCC, Cancer Research, etc. I DO NOT class facebook as a reputable site!!! And to have a video pop up uninvited for you to view when you may be going through a vulnerable stage is the pits. If and when I want to find out more information about SBC I will look out the information for myself from a REPUTABLE SITE, NOT FACEBOOK. This is all about personal choice. I KNOW this is what PaulS was saying to Lou, she was supporting a fellow sunbeam, with whom she had probably supported a million times over the past 9 months.

I do not know Lou or PaulS, as I say I belong to another group, although I have silently gone through every day with the September group, but I was looking up old posts of mine last night and the very first post I ever put on this forum was answered by PaulS, encouraging me and trying to help, as she has always done. It will be such a shame if we loose such a lovely kind lady, for simply trying to support someone else who is going through the same.

I am not usually so outspoken, and I am sorry if I have upset anyone, that is not my intent. We all have our battles to fight. Please let us all do it the way we feel able to.

Love and hugs to ALL ladies xxx
Jobey68
Member

Re: September Sunbeams 2014 - please can we all stay on the group?

I'm with you Pam, it really upset me to watch for many reasons , such a young lady having to go through so much and yes a reminder of what I'm trying not to think about, we have all gone through a horrendous experience and are trying to get through the best we can, it's no ones fault the hand they are dealt and some have more than others to cope with, I'm very aware now of posting too much as I feel I've been fortunate with my diagnosis and treatment compared to some and don't want to upset anyone, a particular post about node involvement really upset me last week as I felt I was being made to feel guilty for mentioning mine were clear and I should spare a thought for others who weren't so lucky, I'm on here to get support and offer as much as I can to others xx
Lou79
Member

Re: September Sunbeams 2014

Hey beamers,

Hope you there PaulS (I need you to come and hold my hand!) Hope the fundraiser was a blast!!
finished my rads Wednesday, when I had my check up in with the nurse, burst into tears!! I should have been over the moon and jumping for joy, but suddenly felt overwhelmed..
So it was lovely to start back to work the next day! I had such a great 2 days, the kids were great, staff made me feel welcome I didn't think about being I'll once all day!
Was my 36 birthday yesterday. Spent afternoon at hospital with my son at ENT clinic, they cortorized his nose there and then! ...We walked the dog, ordered takeaway and watched a comedy, had a lovely evening together, snuggled under blankets, wearing onsies..ha, staying in is the new going out 😉
Also looking for a new house to rent back home, can you believe the difference in rental prices across the UK...?!?
Love to all
Lou xx
Whitfield
Member

Re: September Sunbeams 2014 - please can we all stay on the group?

Pam here saying what I feel from the heart. We are very fragile and some of us draw on the positives and some need to know more about the brutal facts of what if..... The video posted on FB as an automatic load took some of us to places where we don't want to go and shook us up. None of us in the Primary group wanted to upset the Secondaries group. We are praying that you can be helped and are scared we may join you as we do know the facts but some have found getting this automatically on FB a bit if a shock.

After all we all have had or have cancer and that our main fight and we are all in our own way trying to make sense of where we are. Lots of the ladies on the Primary groups are doing loads to raise funds to fight this disease and we want to feel close to others like us. I will be staying on the forum as I need the support and will be very sad if any of the Sunbeamers left. We need you and you have given me load of advice and hope.

Pam x

sampeds
Member

Re: September Sunbeams 2014

Hello lovely Sunbeams,, and as Anna said, hello to the many others that read all of our jumbled up but hopefully helpful gumf,, I know this time last year I'd just been diagnosed and had a bit of time before surgery,, I must have read at least 5 threads from start to finish in 5 days, so helpful it was unbelievable and I really felt like I knew the girls by the end of usually about 100 pages at least!!

This has upset our little family very much and I feel that if we can learn and get anything positive from this then its that the inbox is probably the best way forward if offence is taken, this way the issue can be discussed and explained fully and privately, and it doesn't sully a years worth of love, friendship and care, or hurt people that haven't an ounce of malice in there bodies,,,

Love to you all, Paul's hope the fundraiser was a blast, I'm sure it was!
Have a super Saturday night, I will be mostly eating, drinking and dancing, till I flake out after a couple of hours, such a lightweight these days! Xxx Sam
Havingkittens
Member

Re: September Sunbeams 2014

The last posts have been such a knock, really blew me away. Haven't cried so much for months. I knew that they would upset you too PaulS - and Lou. Lovely, kind, helpful friends. I have to say it's taken some of the positives out of posting here, and like you PaulS I am not so keen to venture out here any more. It looks different now. However, look at the stats - some of the posts have been viewed 1,000 times. I figure that our determined, practical, happy, kindly, daft sometimes but overwhelmingly caring chats that have kept us all going have ALSO have supported lots of other women too, frightened just like we were (and still are). So Sunbeams, thank you for your brilliant posts, support, tips, advice and just being there and going along the route together. We are amazing - look at what we've been through in the last year. My warmest wishes, hugs, support and kind words to all women who encounter this terrible disease, be it primary or secondary. Lots of love, Havingkittens.

Char010
Member

Re: September Sunbeams 2014

Blimey these last few days have been hard, reading the posts has not been pleasant. The comments weren't not meant to offend it was meant in a supportive way. It would be a great shame to lose any of the September ladies I have found you all a great support. We need to draw a line under this.
Paul I really hope tonight went well. Hang in there we are all still here for you.
Sunbeams a big hug to all of you, stay strong xx
Murphy1963
Member

Re: September Sunbeams 2014

Hi PaulS, I am from the October 2014 forum but as I started my chemo towards the end of September I have always followed this thread too. I would just like to say I hope you re-consider your decision to stop using the forum. I have always found you to be very helpful, comforting and inspirational really to all the ladies here. I know what you wrote was in no way meant to offend anyone and I know there would be no malice intended. I can see exactly what you were trying to get across, and I can see "faults" for want of a better word, on both sides. I certainly felt very uncomfortable reading ALL the comments.

We have all been affected by this awful disease and we really need to stick together. So please PaulS keep posting on the forum.

Have a great night at your charity event. Love and hugs the everyone xxx
belinda
Member

Re: September Sunbeams 2014

PaulS please do not leave the forum! I was worried someone would feel they had to leave. We are a lovely supportive bunch on Secondaries, just as you are all too, whatever stage we are, primary, secondary, we are all dealing with so much in our lives. You are an important member of the September Sunbeams and will obviously be very missed if you decide to leave. Please reconsider. X
Whitfield
Member

Re: September Sunbeams 2014

Hello PaulS - I've sent you a private message but wanted to reiterate in the forum that I know you didn't wish to hurt anyone. Things can get posted and misconstrued. Please don't go from the site you have been like the other lovely Sunbeams a real inspiration and help to me. We need you to stay.

Pam x
kilimanjaro
Member

Re: September Sunbeams 2014

Hi PaulS

 

In Life we all make mistakes. Believe me, there isn't one single person out there who can put their hand on their heart and say they haven't made a mistake!

 

The internet is great and this type of forum invaluable at a time like this but sometimes a person can write something and then hit the post button without actually thinking about the fact that what they have written can be read by anyone. This is what you did and it was just a mistake. You did not mean to hurt anyone.

 

I don't know how long you have been a member on this site because I haven't looked. I've not been a member for that long but I know that this forum is important to me right now.

 

You need this forum and from recent comments this forum wants you to stay. Hopefully people with whom you have been chatting will ask you to reconsider. 

 

As I said, in Life we all mistakes. It's a tough journey and it's not one you should make on your own.

 

I think Belinda put it well, "Let's all start afresh."

1852
Member

Re: September Sunbeams 2014

Hi paulS please don't leave forum I can understand why you have been upset but throughout our time on forum you have been there for all sunbeams and you have been an inspiration at times And you have always been ready with advice and encouragement even when you were having rough times so pleeeeese dont stop posting . Well done for last night virtual hugs coming in abundance💐💐 Denxx
Pam sorry care poor take care x
Love to all beamers xx Den xx
Nutty75
Member

Re: September Sunbeams 2014

Oh Paul - please don't leave the forum.  Your posts have really helped me - you have a lot of knowlege and give great advise and your posts have given me a kick up the bum when I'm feeling down.  I agree with what Sam has said.  Good luck tonight .  Take care xx 

sampeds
Member

Re: September Sunbeams 2014

Oh Paul's,, I knew you'd be devastated by all of the misplaced confusion that went on, I wanted to inbox you but I'm never sure what to say,, but I want you to know that I think I speak for all Sunbeams when I say that we know you, we love you very much and we know that you would never have meant ANYTHING even slightly similar to how the comments were taken,, same goes for Lou,, so lots of love and hugs to you, please don't be a stranger, and have a fabulous time tonight, your fundraising is AWESOME!! Huge hugs to you xxxxx💜💜💜 Sam
PaulS
Member

Re: September Sunbeams 2014

I have been so upset these past few days that I have decided that this will be my final post on the forum.  I'd like to reiterate that I had no intention whatsoever of upsetting anyone, and have only the greatest respect and sympathy for everyone who is dealing with breast cancer  - whatever kind they have, at whatever stage and at whatever age.  The diagnosis is devastating. 

 

I want to thank you ladies for the lifeline you have given me during this past year - I have so valued your support and your kindnesses, and wish you all, each and every one of you, the very best for the future. 

 

I have told you that only a handful of people at work know what I have been going through, and that my close friend and colleague has oganised a social event and fundraiser, which will take place this evening. She and I have done this several times in the past - and last time was for children's cancer as a colleague's two-year-old grandaughter died of a brain tumour.  We raised £1000.  Both our husbands are in bands, and both bands will play free.  Tonight is for me - though most colleagues have no idea! - which of course means it is for you. I will raise a glass to you all.

 

With warmest regards

 

Pauline

 

 

Whitfield
Member

Re: September Sunbeams 2014

Sam - well done to daughter but totally understand the perplexity one feels happy and scared at same time.

Operation on cyst was awful and have complained to hospital about care. Will have a substantial scar!

Pam x
1852
Member

Re: September Sunbeams 2014

Well done to your daughter Sam know what you mean you are happy they have passed but it's a mums job to worry she will be fine

Pam hope cyst is gone for good now
Hope you ok Lou
To everyone on forums best wishes take care DEN x
sampeds
Member

Re: September Sunbeams 2014

Good Evening to everybody who's posted on here recently, and lots of love to all Sunbeams!! Well my world has changed today,, my daughter passed her driving test first time,, I didn't realise you could be so happy and so terrified at the same time,, I might lock her in the house,,just for a few years, that'll be fine eh
😂,,,
Got Drs appt to get venlafaxine next week for the hot sweats, thanks Jo for your great message, can I ask what dose you are on?
I'm in bed reading with a glass of Prosecco, left over from the celebrations,, I feel like the Queen of Sheba,, simple things 😜,,,
Lots of lovey stuff to you Sunbeams,, have a great day tomorrow and repeat 😘 xxx Sam
belinda
Member

Re: September Sunbeams 2014

Hi Lou, it's good to hear from you, I'm so sorry your son's father passed away. Let's all start afresh. X
Lou79
Member

Re: September Sunbeams 2014

Hey apologies to all, I should have worded my post properly..
I was upset as the video played automatically on my Facebook, I hadn't chosen to see it. I understand the different cancers, my mother has had cancer since I was 10 years old. I am very aware of the impact on children, being a single parent, my sons father passed away 3 years ago Xmas eve, so rather than denial I feel I have no other choice to try n keep going and perhaps I am too weak that the video deeply upset me..
I didn't mean to cause anyone on here distress, was letting off steam and will think more carefully before posting
Xx
Barton
Member

Re: September Sunbeams 2014

Barton here - another from the Secondaries group, who would far rather not be (wouldn't we all!). I would just like to thank those who have spoken up in support (and Tink and Belinda, of course, for being so articulate) - for the sufferers of Secondaries, and for the video, which I thought absolutely inspiring. I did not think it was scaremongering at all - it was tactful and informational without being dramatic. Surely scaremongering is blowing something up out of all proportion to the facts - not what I saw in the video.  if you don't agree with the video, please just think twice before posting negative comments that have so upset those of us on the Secondaries section of the Forum - one day (heaven forbid) you could be posting there, too. I sincerely hope not. Having said that, I wish you all good luck with your treatments. May the side effects be few and mild. Barton.

Tinkerbelle
Member

Re: September Sunbeams 2014

Hi Ladies,

 

Lovely post Katie.

 

P

 

You are justly proud of your niece.  I hope her research goes well.  I know you weren't intending to hurt anyone and were being supportive to another poster.

 

I'm sure your oncologist is lovely and he is right about the media misrepresenting the facts and statistics about breast cancer, but it is usually skewed to show a more 'positive' view than is actually the case.

 

There is hope and knowing the facts and figures does not change that but they were just as true before you knew them as after.  Some may feel that giving the true information is scaring people uneccessarily but pretending it is not the truth means living in denial which is fine (I use it myself on occasion) if you need to do that, but please give a thought to our position.  Having the truth of your experience denied is soul destroying.

 

I'm sure nobody meant to hurt or offend; it is the negative attitude to our efforts to be heard, from those with the same disease,  that hurts so much.    Breast Cancer Care supports all ladies/men with breast cancer and I applaud their efforts to include us.  I'm just sorry that some people don't think the same.

 

Tink x

MrsGoggins
Member

Re: September Sunbeams 2014

Dear All

I feel I am very fortunate to be part of this group made up of people in the Primary boat and those in the Secondary boat.  Personally I hope I am perceived as very positive to those around me as I feel I am responsible for nurturing them through my experience of BC. They give me unwavering positivity to the point where I do, at times, want to scream and tell them to 'get real' as there are no guarantees that I wont be changing boats anytime soon. However, I understand that really no one wants to hear my inner ramblings in the real world, it is all too scary for them.  I do spend time reading posts in the SBC area and learning so so much about the horridness of SBC but also about the absolute grace and dignity with which the ladies conduct their lives. Knowing that there is the support and friendship from people who have already experienced the unthinkable is reassuring as I personally dont think I would have that support in the real world having experienced peoples reactions to having BC at all. Most people cope with thinking/believing that we are all cured with treatment - to try to explain the longer term reality is too painful to do and to watch responses. I like my oncologists words on my consent to radiotherapy form under 'reason for treatment' - he wrote 'for a chance of a cure from cancer'.....and that is exactly what all the treatment has been about 'a chance'. A chance worth taking. Love to everyone. Katie xxx

catokitty
Member

Re: September Sunbeams 2014

My OH always tells people that I have had the all clear and am fine, back to normal, fully recovered etc and if I try to tell him about 10 and 20 year survival rates and possibility of secondaries he tells me to be more positive and that is how most people react I find.   I saw the video and found it powerful and moving. I am glad I have seen it and I am aware of the facts about my risk of secondaries. Hugs to everyone going through this horrible disease x

KAM80
Member

Re: September Sunbeams 2014

Thank you Pam. I'm sorry if the message appeared as a rant, I just couldn't believe the comments. Just so upsetting.

I agree, people don't want to know the facts. My family are all well and truly in the positivity camp (as am I generally). It's how people cope with such a frightening prospect.

Thanks again and good luck to you.

Kate x
Whitfield
Member

Re: September Sunbeams 2014

Kate. - I saw the video and it educated me. I'm hoping I don't go into the secondary boat but am fully aware this is a risk for all of us and felt the video very saddling and true. I feel we must get this info out there as so many do not know the full facts. I'm quite surprised that at lot of my female friends seem to think I've beaten it and cant understand when I say this is now with me for as long as I have left in this world. That said, a lot of the women on this forum have found treatment hard and their messages are trying to remain positive thinking they're clear so it's a fine line.

I know I'm aware of secondaries but as for friends and families they turn off when I want to give them this information as its too hard for them. I suppose we all take our own path and I wish you well with the lifelong challenge ahead of you.

Sending you love.

Pam x