Bone mets - please join in

[rosie53]

Morning ladies, hope you are all ok today
Tracey good today, Helen put your feet up and have a "me day"
Chocolate im with you and Helen on the 45 cut off age, im 46 and and consider myself to be young i certainly dont feel old!!
I am learning that us sbc ladies do get forgotton about and if it wasnt for this forum i would be lost, i consider all you ladies to be my very special friends and support network!!
Anyway off to work now love and hugs Janette x x x

[2catlady]

Hi,bev,I'm dreading the tiredness as I'm exhausted now!! I finish on the 5thsept & off on the 27th. So I'm hoping SEs have settled and skin has no burns ,wounds etc. bit worried about that as soooo pale skinned and burn after 5 mins in sun and can't sunbathe! Yikes,I blame my Norwegian genes lol.
Yes,bev,we get a raw deal being SBC ladies to start with.
Yes,45 is a strange cut off age. I reckon if we were the pink fluffy lot we all would be included. I too have a youngish son too. I certainly don't think under 50 is OLD!!
I'm off soapbox now too lol.
Huge hugs,Helen xxxxxx

[Chocolates]

Morning Helen, enjoy your day today - rads can be really tiring towards the end so put your feet up. When are you off to the land of magic - have you got some time after finishing rads before you go?

Lynn - have a fantastic break - don't wear yourself out on the first day - but remember to make fantastic memories that no one can take away

Tracey - good luck today. Let us know when you can how you got on.

Hi everyone else, Natalie, Janette, Bev, Belinda - and everyone else. Have a good day. Aiming for live chat tonight so might hook up with some of you.

I asked BCC why the cut off for their weekend for secondaries is 45. I'm a year over but still working, have young ish children and reverting back (for the 2nd time) to being pre menopausal. I know you supposedly have to put a cut off somewhere but why 45 and what is it in the conference that excludes us older ladies. Just a bit confused really - us sbc ladies get a raw deal as it is and now bcc exclude some of us from a conference - bit over the top from me maybe but I hope you get the gist of how I feel about it. Helen, I noticed you also commented on the thread - anyone else feeling the same? I think we should let bcc know. Right I'm off my soapbox now.

Have a good day,

Huge hugs everyone,
Hxxx

[2catlady]

Hi,lovely ladies,yes,I've been moderated and got a PM from them yikes!thank god I didn't write full words out I'd have been thrown off site,honestly I'm not normally foul mouthed,just extremely on the edge yesterday and needed to vent to people who understand.
Well,Bertha has gone and all is calm inside and outside in the NE lol
How are you all? Thinking of you today Tracy and hope you get some answers and a plan.let us know as we are all here holding your hand.
Chocolate,I hope your roof has stopped leaking .
Well lovely ladies,I'm relaxing today as it's the only day until sept 5th I don't have a hospital appointment on,some days three!!
Hope you are all well,huge hugs,stay strong,Helen xxxxxxxx

[Chocolates]

Oh yes Helen, you've been moderated!!! Hahahaha!!! That's made me chuckle . However hope you are feeling more like yourself tonight. Thanks for bringing the parasol in - hopefully the roof will start to dry out a bit now!!!

Huge hugs,
Hxxx

[belinda]

Blimey I see a Mod has made some adjustments? to your posting Helen! Very curious about the original now! :-)
Well who can blame you after such shoddy 'care.' X

[Bevlaar]

Good for you Helen!! He had it coming and its time you got out of there anyway. Bet u feel loads better after getting it off your chest!
Big hugs for you xxxx

[Desi-2]

Well done I say!! Hope he heard wherever he was, probably hiding! Xx

[2catlady]

Hi,ladies,yes,I feel very embarrassed after the bad language! But glad I got somethings off my chest! I think poor hubby was in shock with my behaviour ! Lol.
Lol,Chocolate,my parasol is now in,mind it's so windy here I'd look like Mary Poppins as I took off with it if I tried to use it.( mind,Mary never used rude words lol)
Huge hugs ladies,as always you keep me sane,Helen xxxxxxxxx

[rosie53]

Oh Helen i think your melt down has been a long time coming!! I know none of the ladies on here would blame you with what you have had to put up with its a disgrace, must admit though it did make me chuckle when you called him a f***ing t****r lol
Well lets hope your GP can find you a new Onc now and that you get the treatment you so rightly deserve.
Hello to all you other "special" ladies out there hope everyone is ok.
Love an hugs Janette x x x

[Chocolates]

Helen, it was coming though wasn't it after all you've had to put up with. Hopefully they now fully appreciate how you feel - however knowing them they've probably put it down to you not coping rather than their own incompetence. I'm glad you ranted at them - and actually your onc does sound like a complete to%#er!! I can think of much more apt names to call him - how long did you wait for your ct scan? Absolutely ridiculous.

You're home now - and your gp will sort you so don't worry anymore about it. A new onc in a different hospital is exactly what you need and deserve. Fingers crossed it happens very quickly. Do you feel a bit better for ranting or do you feel a little silly now your home? I hope you feel better and don't for one minute ever feel silly or guilty. I know it's not in your nature ( which is why I wonder how you now feel) and thus sometimes you can feel awkward afterwards. For some people that's a normal part of their day.

Anyway - get that bl%#dy parasol in - roof still leaking after more showers today - oh going mental so please - I'm begging you bring the dam thing in.

Huge hugs to you,

Hxxx

[Lynnq]

Helen I really feel for you......I can tell from your posts that you're not like that normally. The way that you have been treated is not normal and I am sure that the melt down could have come much sooner. I can 't imagine how you must feel about that particular place and I do hope that your GP can sort them out. Loads of hugs - try to have a nice afternoon. Xx

[2catlady]

Omg!!! Ladies,Im just back from Fawlty towers and had major melt down on ward. I called onc a F****** ****** and I had no faith in him( not to face) and hospital was a joke as I've had to fight for everything and sick of the lot of them!
As you can imagine after trying to pull IV out in torrents of tears they took me to room to calm down. Omg that is soooooo not like me I'm not like that normally.
I'm home now and calmer,rang GP and left message to get me out of there.
Hubby said well that was a bit of entertainment on ward!

Sorry Lynn,don't want to rain on your parade, have a wonderful time of mickey magic and I can't wait to hear about all your fun.
Huge mickey hugs,Helen xxxxxxxxxx

[Lynnq]

Good morning everyone. Yes Bev & Chocolates I'm off to Florida on Saturday - .and I can't quite believe it. We had to cancel a planned trip 2 years ago when I was diagnosed. Luckily we hadn't actually made any payments I had a 'call back' from a routine scan. My plan was to have the second examination, get the all clear and then start booking. After duscovering secondaries quite quckly I thought I woukd never go abroad again. However after much despair and many tears (you've all been there) I finally got the magic STABLE and managed to get insurance.......but had decided that I would go anyway if I couldn't get insurance i'd just leave out the cancer cover. I have the usual achey joints but may treat myself to a scooter on the longer days...

I have had a lot of info and support from these posts and can't say enough thanks. Roll on Mickey.........and Helen when I am back you will still have it all to look forward to !!!!!!!

[nicky08]

Hi Helen
After such a cr@p week for both you and your sister it is lovely to see that you have been, and are, back on here being as cheery as you always have been :-) You are a great support for all the ladies on here, both new and old, so I hope we can all support you. Good luck with all of your appointments that are coming up and I hope that someone pulls their bloomin' finger out and gets a treatment plan in place. Remember that a lot of us have had all sorts of chemo (if I remember you haven't had it yet, but I may have that wrong) so you can ask away about anything they throw at you. And it sounds like they may literally throw it at you going on your tales of the unexpected from Fawlty Towers LOL. Take care and do look after yourself.
Hi to all other boney ladies and wishing you all the best with scans, results and treatments going on in the next week.
Nicky x

[2catlady]

Good morning lovely ladies,hope we are all doing okay. Very windy in NE at moment,sounds like winter outside!
I'm off to see the harpies for zometa this morning always fun as they are sooo caring NOT. Well apart from one nurse who was lovely when I saw her for bloods on Thursday (she'll probably leave soon lol)

Good luck to all getting results or treatment plans this week ( Tracy ((())))xxxx) I'm thinking of you all.
Hope your cooking for the football gang went okay chocolate. I'm sick of the sight of football and now it's the football season,yackkkk. Being married to a NUFC fan ,that's weekends off limits now,as it's not just a game when he sulks when they get beaten lol. And I won't even go near derbies .
Well that's my yapping done,have a wonderful day lovely ladies,huge hugs & stay strong,Helen xxxxxxxxxx

[2catlady]

Good afternoon or is it evening lovely ladies,
Chocolate,I did mention to my sister to join or look at forum as they are a great help. She goes on Wednesday to see her doc so she'll have a plan then,which we know always helps emotionally.

Tracy,good luck with your appointment and hopefully you will get cape... first before the nasty stuff.(or nastier stuff as non are a walk in park)
You're like me, first chemo and I know it scares the life out of the both of us.
We will hold each other's hands.

Well the rain and Bertha hits us tonight and tomorrow morning ,yikes. Hopefully my roof will still be on tomorrow!!

Have a lovely evening everyone and huge hugs and good luck to everyone ,Helen xxxxxxxxx

[Desi-2]

Hello Chocolates after a wet and windy morning down south we now have some sunshine! There's a charity event for our local hospice this afternoon so it's good that's been able to go ahead. It's not just my house the seating causes problems in then ha ha

Helen good luck this week, I see my on on Tuesday as well to discuss my options.

Good luck to anyone else who has appointments this week too.

Tracy xx

[Chocolates]

Afternoon ladies, sun finally coming out here. We were wakened to the sound of dripping - the flat roof is leaking from that dreadful rain. Husband muttering furiously about more cost so went off to do the shopping - he's calmer now.

How is everyone doing today? Helen, so pleased to see you back with us - I know it's been such a difficult week but you got us all so worried. Not long for rads to start now and an onc appt in the middle of it as well. So pleased onc appt has been moved - you could not have been kept waiting till October. I'm hoping that once a plan is in place then you will start to feel a bit more settled - must be very frightening for you though. How is your sister doing - do you think she would be able to join a forum somewhere like this. I wish I'd joined right at the beginning of my journey - such a great place to come and rant to people who understand. Anyway sending huge hugs to both of you xxx

Lynn - your trip sounds amazing. You'll have a great time - the first few days will be a bit scary but I'm sure you'll settle and relax properly. Have a wonderful time and come back and tell us all about it.

Well I must dash - charity shield today and my son has 10 friends round to watch. I'm cooking for them all. Husband says no one better sit in his place - after the roof this morning I don't think anyone will!!!!!!! Reminds me of Tracey and her partner - men are just all the same aren't they?

Hope everyone is ok - good luck for treatments/results this week.

Huge hugs,

Hxxx

[rosie53]

Hi Ladies, hope everyone is feeling ok, weather very wet here today in Manchester!!
Helen glad to see your post you are sounding more like your jolly self again, life has been s**t for you this last few days but your positive personality is hitting back now and thats great!!
Sorry to hear about Liz, her name isnt familiar to me but its so sad all the same.
Good luck to anybody having scan etc or getting results this wk.
Love an hugs Janette x x x

[Bevlaar]

Morning all 😀
Glad to hear you're ok helen and good luck with your treatment. And good luck to anyone having treatment or results this week.
Lynn...sounds like youre off to Disneyland! Fantastic. Nothing like a good holiday to boost the spirits!
Sun's coming out here in south Wales. Looks like it could turn out to be a lovely Sunday.
Lovd bev xxx

[2catlady]

Hi,Lynn,yes,rads on 13th for practice session and another two tattoos ( 1st real rads on 14th)why I need 6 I don't know? I've already got 4 from rads on spine last year.that will be 10 in total!! I'll be able to play dot to dot soon lol. I finish on 4th sept and go on 28th sept.
You will be fine don't worry. Pace yourself and rest as it's a very tiring holiday but truly fantastic. Remember you can hire wheelchairs if you need one in every park.
I'm soooo excited for you and you will feel fantastic with "mickey magic"
Have a wonderful magic time ,huge hugs,Helen xxxxxxxx

[Lynnq]

To all of you other ladies, don't want to list them in case i miss someone out just wanted to say that i don't often post but i read these threads every day - especially this one and find them reassuring, helpful and informative. Whenever i do post i receive kind words. Only hope my spasmodic posts are also helpful at times....

[Lynnq]

Morning Helen, nice to have your cheery greeting every morning, missed it the other day.
I'll be thinking of you on Wednesday (13th right for Rads). How soon after is your trip?
Feeling a little anxious about mine now but I know it's only pre trip nerves and I will be fine when I get there.

[2catlady]

Morning ladies,hope everyone is okay,especially after the dreadful news about liz.
Thinking about you all,huge hugs,Helen xxxxxxxxxxxxxxxxx

[JulieD]

Belinda thank you for posting about our lovely Lizcat, newer ladies might not know her as she didn't use the forums as much in recent months but lots of you will have known her and benefitted from her warmth and wisdom, she was a truly lovely woman and will be very much missed.

[2catlady]

Belinda,thank you for letting us know. Terribly sad news,this dammed disease .
Huge hugs to you Belinda at this awful time xxxxxxhelen xxxxxxxx

[belinda]

Hi Helen, I agree with Stephie in that now you are going to have some pro active treatment you might get the stability we all wish for. Let's hope it's not too wild weather wise this weekend! X

[belinda]

In case anyone bypasses all the other forums and just visits here can I just let you know lovely Lizcat, who used this thread a lot, has sadly died. Julie has kindly posted the news on the Dedications forum.

[2catlady]

Good morning lovely ladies, as always you are wonderful xxxxx I hope everyone is okay today. Looks like we are all going to get a bit a dodgy weather this weekend. Sorry it's my new parasol that's caused it lol.
Have a great weekend and huge hugs to you all,Helen xxxxxxxxxx

Belinda, I turn the macmillians advert off when I see it" no one should face cancer alone" ha they do at my hospital. My head has refused to have mac coffee mornings anymore at school because of my BCN. I know she's the exception to a wonderful organisation.
I'll have to tell my head to have a strawberry tea event for bcc next year as Mac are in her bad books now!

[Bevlaar]

Oh helen..I can't believe what I'm reading. Such blatant lies coming from a "professional" (I use the term loosely ) who is supposed to be caring for you! What on earth is going on there??
Keep strong...I need you here to keep me sane!
Lots of love and many many hugs 💕
Bev xxxxx

[Stephie23]

Hi Helen. Pleased to hear from you, I've been thinking of you and your family. It sounds as if your GP is a formidable character! I'm pleased that he is championing you and I hope he succeeds in securing a change in hospital. I really am shocked by the care you gave received.
Please, please don't give up hope of stability. Why can't your treatment plan , ( once you receive it) , be effective? As you know there are lots of inspirational stories on this site.
I do hope that you and your family enjoy a wonderful holiday and that you can move forward. We are all by your side. Take good care of yourself. Steph xxxxxxx

[belinda]

Agrh speechless about your terrible, Terrible! BCN Helen. A Macmillan nurse who rings you 5 mins before shutting up the shop for the night, shocking. We are all here for you. X

[JulieD]

|Helen,
Good to see you posting and glad to hear your GP is willing to act on your behalf if hospital don't do something. Good for your husband! At last some kind of proper response from the nurse.
If she is a Mcmillan nurse when you feel up to putting your complaints in you should also make sure Macmillan know about her, she is not a good advertisement!
Most importantly, I'm pleased to hear you are starting to feel a little less overwhelmed, you've been through so much and it will take time but you will get back to your positive chirpy self.
I wish you luck with changing hospitals,you should be able to go anywhere you are willing to travel too. I'm still under my Onc in London though I live (and now have treatment) in Brighton. Take care of yourself, big hugs xx

[Desi-2]

It's lovely to see you posting Helen you had me worried there. Onwards and upwards now they've had a shake up they may think twice before messing you around anymore. That's if you stay there..

Love Tracy xxx

[rosie53]

Hi Helen, so good to hear from you, what can i say about that dreadful hospital words fail me!!! So glad you have pushed things and got an earlier date but you shouldnt have had to do that arrggh i so angry for what has happened to you and the way you have been treated,
You go to Florida and enjoy your break, by the way i have got hol insurance from Pink Ladies, my McMillan nurse told me about them, it cost £43.00 with cancer cover of up to 5 million that was a lot better than i expected.
Hello Chocolates, Bev, Shelia and all you other "special" ladies out there
love an hugs Janette x x x

[Lynnq]

Like everyone Helen I am with you. Pleased to hear you're pushing and fighting and hubby is supportive. - involve all management and don't let that horrible nurse off of the hook. I know you won't feel up to it now but don't shut up. Enjoy your holiday......

[2catlady]

Ps.i start rads on 13th chocolate. When hubby said why is it taking 9.5 weeks after surgery to start treatment when guidelines are 31 days. BCN said that's for primary ladies!!!!!! Oh obviously I'm not important being SBC !?
I'm in a rantty angry mood at moment grrrrrrrrr.
Huge hugs lovely ladies,Helen xxxxxxxxxxx

[2catlady]

Ladies,thank you xxxxxxxxxxx I'm pushing GP to change hospitals xxxxxxxxxxxx

[roxy12]

Hi Helen, I too want to send you a massive hug! Please stay positive and if I were you I would be asking my g.p. who seems to be on your side to find you another onc asap no matter whether you see this one soon or not. I wouldn't trust him to put a plaster on a sore finger! As for the nurse she needs reporting. I know at the moment you won't feel up to it but I'm sure you will in a while. You are a very strong lady and I'm sure you will soon have your fighting spirit back.

Take care Helen. Lots of love, Sheila. Xxx

[pam01]

Hi Helen. First of all hugs!xxxx

Second Im really glad you pushed and pushed and got something sorted for fairly soon...If this new cancer is aggressive then the sooner the better!...but also remember chemo works best on rapidly dividing cells and so long as its working is likely to have greatest effect on those tumours.

Of course its not good news but lets hope you are posting re stability or even shrinkage very soon.

Your holiday will be very important to you........hopefully treatment can be planned around it.....????eurotunnel insurance?

Im so sorry about whats happened and how poorly its been managed by your team. Lets hope this has shaken them up and things will work more in your favour now. best wishes Pamx.                                                                     

[Chocolates]

Helen, the lies - I just can't believe the lies. How dreadful - as if the diagnosis isn't enough. How dare she lie like that. You may not be up to it but your husband needs to confront her in front of head of nursing at the hospital. She just can't get away with it.
Helen, today seems awful like the last few days but you will get there. Don't write yourself off yet. There are still meds out there that have good results. I'm just really worried about whether you can effectively stay at that awful hospital - trust is important in our care and there can't be any at the moment.
When do your rads start? I'm glad you are still going on holiday - that is definitely needed and a time for you and your family away from this awful s%#t you're going through.
Your story beggars belief - I just can't believe it and don't really know what to say but I wish I could wave it all away for you. Instead I'm sending you huge hugs for you and your family.

You rant away girl whenever you like. We're all here for you.

Much love,
Hxx

[2catlady]

Hi,lovely ladies,I want to say a massive thank you for your posts ,they have truly moved me and helped me enormously. I've been moved to tears by the amount of care and love from the wonderful,caring ,brave ladies on here. I can't express how much it's means to me. I'm still very wobbly today.I knew my cancer was aggressive but the shock in which its spread has hit me like a sledge hammer from thinking I've got a few years of living left to a short time line is hard to come to terms with. God I never even got to say I was stable. I so longed to write those words on here and celebrate with you all

I don't know where to start with the farce of the last two days and the lies from my BCN who is also a Macmillan nurse(a disgrace to the mac organisation)
Firstly after ringing at 8:00 to get my ct results she left me worrying for nearly 9hours. Ringing me 4:55 ,5 minutes before she leaves.leaving me with no one to speak to with questions as she was going home. She said I can't see onc to Sept as he on holiday(1st lie) & I would start chemo in October after my hols. I said that's 12 weeks and far too long. She replied well cancel your hol and start two weeks earlier!! I said you have just informed me my life is now shorter than I thought,I need this holiday with my son & hubby. She said she'd ring next day.
I was so glad hubby worked from home yesterday as I was an emotional wreck & didn't want to/couldn't speak to her. Well hell must have frozen over yesterday morning as she did ring at 8:00 !!She told hubby that it would be sept when onc gets off holiday to see him and she would sort appointment out straight away. Hubby said that's far too long and there must be someone I can see earlier (apparently there's no one for BC)She also said you must have had idea as tumour markers had gone sky high!!! Well when my markers had gone up 90 she said that was okay as they can fluctuate like that and not to worry! Well my markers have been coming down last three months and ONLY went up 15 this month,so now apparently 15 is sky high (bull sh@t) so bloods good,me feeling good,markers mainly down so NO CLUES!
In the time we were waiting for her to get back we rang GP who said I must get an urgent referral and there were other oncs and sept was far too late to see him and yes I can go on holiday as I need it now,he'll give me antibiotics to take on holiday (no insurance)
Well after 6 hours of waiting for her to ring back we rang her ,she said she had left message on secretary's phone for her to ring(are we onto 3rd lie) my hubby works for NHS and health professionals ( I use professional loosely with her) get through straight away not like Jo public. She was waiting for her to ring back ( I said to hubby she wouldn't have gotten back til 4:55 so we couldn't contact her again if you hadn't rang her) hubby said we have spoken to GP who said I need urgent referral and he would sort if she didn't. Well within 5 minutes she was back on phone ! I have an appointment on 18th as he's coming in on his holiday to do a clinic,the lies drip of her tongue. Does she really think I'm that stupid!!! I said I have rads at same time,within 5 mins she had that sorted. God my GP must be scary!
I was in onc day ward at 4:00 and was telling nurse about my new problems and she said oh he's not on holiday and coming in to don"special" clinic he's in sorting out clinics out anyway!!!
I must say the nurse on ward was fantastic ,she used to be BCN and I said to her you are the first person on here that's taken the time to talk to me. She also agreed that far too much support and care is given to primary ladies and SBC ladies get next to nothing,you're telling me!!!!
Sorry ladies for my huge rant and post I just need to get things off my chest.
I'm sending you all my love as I couldn't have gotten through these past few days without you all,huge hugs to you all and BCC( please keep campaigning for better care for SBC ).
Massive huge ,my wonderful cyber friends ,Helen xxxxxxxxxxxxxxxx(((((((()))))))

[Porkie]

Helen - I am thinking of you and do hope that you are ok. You are not alone, with much love xx

[Desi-2]

Just wanted to say Hi Helen if you're reading the posts, remember Milo's recent post and the success on her liver mets.
Lots of love
Tracy Xxx

[dawnhc]

Helen I am so very sad to read of your latest results. Lots of advice on here from 'the girls' but I guess it will be a while before you feel strong enough to register any formal complaint but right now I think you need to find the sort of support that will take you forward in getting the care you need. Not sure where it will come from but of course macmillan are excellent and of course as many have already said, a call to the helpline here. Sending hugs to one lovely caring lady ((((((((((((((((-))))))))))))))

Dawn

xx

[sivam]

Hello Helen, so sorry to hear your news, I have been to the virtual  chapel in the dark wood and lit a candle for you and all the sources of inspiration on this thread http://www.gratefulness.org/candles/candles.cfm?l=eng&gi=DDW

[Stephie23]

Morning Helen. I jusr wanted to join the other ladies and say how sorry I am to hear your news and send you a hug and lots of love. I don't have bone mets, but read this thread to benefit from the information you share and support you show to each other. I find it very inspirational and I know everyone will be holding your hand through this.
I absolutely agree that if you feel you want to contact them PALS would be a good starting point to address your concerns around your care. It is unacceptable that you were given your scan results over the phone from the BCN and with no immediate follow up appt with oncologist. I hope this can be rectified.
Poor care aside you will be given a treatment plan and there are effective treatments and new ones being discovered all of the time. So please try to draw strength from this and don't give up hope.
I will be thinking of you a d your family. Take care . Steph xxxxx

[rosie53]

Morning Helen, hope you have managed to get some rest, just want to say when you are feeling a little stronger the other ladies are right PALS are fantastic, we had probs with my late mother in law 2yrs ago and went to them they got things sorted in no time.
please stay strong you are a very special lady to all of us!!! Love an HUGE hugs Janette x x