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Bone mets - please join in

rosie53
Member

Re: Bone mets - please join in

F/F and Lynn, hope you have a truly wonderful day with your family and friends xxxxxxx

PS ladies, don't know if you are aware but our lovely Helen's (Catlady) sister has posted on her RIP thread??

Hugs Janette xxxxxxx 

nicky08
Community Champion

Re: Bone mets - please join in

Hi ladies, sorry for the long absence from this thread, it's been a busy week or two with me so I have only posted on a couple of other threads in that time.

Great to see your latest update Dawn, but not so good about the tooth ache that you, and edwina, have been experiencing. I hope the fact that it came out of its own accord, with a little prodding from you, means it will heal well and not cause you any further problems.

Janette, I was offered 'just' hormonals when my bone mets were dx 7 or so years ago but went the chemo route. In hindsight (ain't that a great thing!) I should have had the hormonals firstly because I have always responded well to them and they kept me stable after that initial chemo but secondly the chemo itself caused long term heart problems which impacted my treatment later down the line. If they are working well for you keep on them! They are a far kinder form of treatment than most of the chemos which always have a far longer list of side effects.

To the mothers of the bride/groom aka Lynn and. FF I hope you have the most marvellous days with your loved ones. What a truly special occasion and I will be raising a glass to you both by the lake in the Cyber Cafe later. When you both have the time I'd/we'd love to hear about it all.

to everyone I've missed, sorry, but I have not been able to remember everything that's been written over the past few days. Sorry to hear of any of you suffering with treatments or side effects and to anyone new who has joined us I hope you find inspiration, support and advice from all of us on the forum.

Nicky x

rosie53
Member

Re: Bone mets - please join in

Hi Dawn, thank you for your reply, my onc said exactly the same regarding chemo when I questioned why she hasn't suggested it (I only questioned it because the first breast doc I saw said that was the route they would be taking) but she totally dismissed it and said that she did not want to use up all the options too soon. I do have great faith in my onc and The Christie hospital she has been really good with me since my mets dx last year, I am a real stress head and every little ache and pain I am on the phone and she will always see or advice me.

Take care ladies Hugs Janette xxxxxxx 

dawnhc
Member

Re: Bone mets - please join in

Janette I was asked if I would like denosumab about 2 yrs ago - the Marsden seemed to be offering it to anyone bisphos if they wanted to switch. I was hesitant because I was still struggling with pain control and just didnt fancy anything that might add more pain into the mix. Was told the injection would be in the thigh and at that time I had started losing the use of the quadricep muscle in my left thigh and having a lot of pain in the right thigh. OK says nurse - we could do it in the stomach. I think if she had looked at my stomach she would have realised that was a non-starter. I have the intrathecal drug device implant in that area and it is quite large in my very small tum. I also have large scar from TRAM flap on the other side.

 

You are fortunate in not having had chemo Janette. At least that route is still there if you should need it but so long as tamoxifen is keeping your cancer under control and your oncs are keeping a close watch on you, it is better than throwing a load of poison at it that may or may not work. I know that since I started out on this journey there have been new drugs, new discoveries - and yes, even things that work!

 

Dawn

xx

 

Jam
Member

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Marirose so pleased your usual onc was on the ball. Why do some of these Drs think they know the answers without looking at all the information. Don't think they realise what stress it causes. Good luck with your pain relief hope they can sort it for you xJanetx

Marirose
Member

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Hi everyone

Well after a stressful week I am feeling so relieved after talking to my onc on the phone this morning.

Last week I was given an emergency MRI because I was having pain and difficulty walking The onc thought it may be compression on the spine and to get me the scan quickly it meant me going into our cancer hospital. I had to stay over night and a ward onc told me that I had proression from the tumour up the spine so my treatment was no longer working and there would be a MDT meeting in a weeks time I told him that my onc wanted to see me next Wednesday and could I go home. 

The onc was really annoyed that he had taken it upon himself to dx my condition without seeing my file and she wanted to discuss the CT scan from June and the MRI with the radiologist she would phone me the following day and I must keep taking the drugs e/e. I missed her phone call but 8.30 this morning she rang they had viewed the scans slice by slice and everything is stable I do have a slipped disc which with the cancer is giving me the trouble.

So I haven't got it traveling to my head or other places I imagined feel so much better

FF and Lynn enjoy weddings

Dawn your post was so inspiring and is what we all love to hear.

Janet thanks  for the advise for having plenty of fluid

Janette glad you are feeling better

SS it was interesting to hear about new drugs

Welcome to Red and scoobie some bril ladies on here

Helo to others I haven't mentioned love to you all xxx

 

scoobiesue
Member

Re: Bone mets - please join in

Belinda please keep posting. You give me such hope that this situation can be managed long term. Some days I imagine every small ache is an indication of the mets progressng. Sure this happens to us all. Do we ever have a meet up? Love to you all. Happy bank holiday wekend. xx

rosie53
Member

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Thanks Glo and Belinda, have been on it since bone met dx March last year.

Hugs Janette xxxx 

Marie123
Member

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Lynn ,   wishing you a wonderful day . Marie xxx

funnyface
Community Champion

Re: Bone mets - please join in

Hi Dawn glad to see you posting. The tooth story sounds dreadful. Jam keep drinking that water. I'm terrible at drinkng enough. Lynn enjoy your sons wedding. I'm out of here for a few days. FF

belinda
Member

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Agree with Glo, Janette I was on hormonals only for the first five years. 

Glo
Member

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Janette, how long have you been on Tamoxifen? I was on Letrozole alone for 4 years before it stopped working! If hormones are working don't be concerned about "only being on tamoxifen!
Glo xx

rosie53
Member

Re: Bone mets - please join in

Morning ladies,
Dawn, thank you for your post, its really helpful and inspiring to read about you ladies who have been living with cancer/mets for a long time, can i ask why you didnt want denosumab? Im on that and thought it was one of the newer better ones for bones?
I wonder about my treatment sometimes as nearly everyone on the forum has had or is having chemo, i have never had it (dont get me wrong i dont want it either) but worry that only being on tamoxifen is powerful enough??
Take care ladies Janette x x x
belinda
Member

Re: Bone mets - please join in

Lovely to see you, fellow night owl, here Dawn. 😊 X
Oh Jam, the high calcium levels are exhausting, hope you're able to enjoy little Thomas's visit. X
Think Lynn's son is getting married this weekend? Hope you all have a great day. X
Jam
Member

Re: Bone mets - please join in

Morning everyone.  Hugs to those not too well at mo.  I've been poorly with high calcium. Have had to have lots of fluids which in turn meant lots of trips toilet and the medics want you to keep movement up so no catheter to help and I have had pains all over my body different place each day. It's taking forever to get energy back and be able to move without a lot of pain. Have been worried about the bloating around my middle too but went for ultrasound yesterday and ovaries etc are all ok so feeling more positive. Just need to be able to get about by myself again. So what I'm advising is if you're on a treatment that you need to keep your fluid intake up please please do. Don't make my mistake.   Now to mention the happy weekend events that are happening for lots of us too. I know there are a few weddings have fun all of you and relax and enjoy. Everyone else having family visits etc enjoy lots of fuss and hugs. We've got my eldest son wife and new grandson coming for the weekend tonight so getting very excited (must remember to take it easy today so I'm ready). We've only managed to see Thomas once and he's 12 weeks this week but we have been face timing all the time. Love to you all xJanetx

dawnhc
Member

Re: Bone mets - please join in

Hi all, sorry it has been some time since I have posted although I do follow this thread regularly. Belinda I know what you mean about repeating yourself LOL. But I think people like you and me, and FF who have been around for so many years with bc do need to keep letting new folk know that there is hope. For those of you I haven't 'met' before, very very briefly! I was dx in 1990 with primary bc - and back then it was er/pr neg and her2 I dont think was known about. After chemo, rads but no surgery I went almost 5years before it came back and for the following 7 yrs it came back about very 18mths with all the ensuing chemos, rads, surgeries. In 2002 dx with very extensive bone mets and went onto bisphosphonates(pamidronate) and couple more chemos (unsuccessful in halting things incl. considerable no. of lymph nodes on the march). Onc thought then to check her2 status and found tissue had been tested from last surgery and was her2+++. On to herceptin in 2004 - my magic pill (or drip) which kept the disease stable for 10 yrs although towards the end very slowly serious damage being done to spine & soft tissue tumours causing pain that has been very difficult to control. Somewhere through the years bisphos. were changed and currently on zometa (said I didnt want denosumab). Dec 2014 was switched to Kadcyla and this has had quite a dramatic effect on the pain problems. I have an intrathecal drug device (internal direct to spinal fluid) which delivers morphine and a couple of other pain drugs and I have been able to slowly ask for reductions down to half of the dose :). This is all a very potted version of 25 years living with bc this month.

 

Edwina I am sorry I didnt post about this earlier but suffice it to say the pain has almost been too much to bear to write about it. I have had a large molar (dont know if it  is a wisdom tooth) that has been giving me grief on and off for some months now. I am one of those who is afraid of dentists and give them a very wide berth. The last time I went was before starting on bisphosphonates in Dec 2002. I rarely had any problems with my teeth and never had a full set which is why I think I have got away with it for so long. I finally told my onc when the pain started getting so bad and he referred me to the dentist & oral cancer specialist at Royal Marsden in London (I am treated at Sutton Marsden). She said that because I had been on bisphos. for so many years I would need to stop for at least 10yrs to make any difference. If she removed the tooth the socket/bone would probably not heal and the pain I would be left with would be worse than I had now. If I really did find it unbearable she would remove it but was not advising it. Rock or a hard place or what! Edwina I am sure you know how miserable that pain is. Things got worse when my onc tells me I should NOT be taking ibuprofen because my platelets were so bad from Kadcyla and ibuprofen were making that worse. I just wanted to cry. Dentist warned me the tooth could take months before it fell out. OH JOY it fell out on Sunday. Two days earlier my hand had slipped when I was brushing and I really hurt that tooth bad, My jaw swelled up and on Sunday I was looking at the tooth in the mirror and wanted to feel how loose it was - well it just slipped up and out and the pain stopped. My swollen jaw is back to normal and I am now hoping the socket and whatever else, heals up without any problem. You bet I have everything crossed. Will I go to dentist regularly now? I don't know.

 

Sorry this has been quite a long post. There is lots more I want to say but I need my bed and am sure you have read enough. Love to all of you, specially those going through bad times just now after losing some dear friends. It isn't easy is it.

 

Dawn

xx

Pleasant1
Member

Re: Bone mets - please join in

Red, Scoobiesue, Springsummer, Belinda and all you other wonderful women on here and out there,

 

Great to read some positives. We've all been (and often are) so done-in by this hideous malady, in the depths of despair and petrified to the point of paralysis. I've recently been delivered the incurable line too and can't come to terms with it, let alone accept it. I'm loving the sound of all the potential years clocking up for us. A huge difference from the stats that say we've 2-5 years and that 1,000 of us die every month. Are these figures even correct? So terrifying!

 

Regarding immunotherapy, I've been reading about Southampton Hospital's campaign:

http://www.southampton.ac.uk/youreit#youreit

Please share on twitter and fb. They still need to raise a huge amount and are asking for donations of £3. Text YOUREIT to 70660. More than annoyingly it's not due to open until 2017. :(((

 

God Speed The Cures!

 

Best wishes to you all.

 

X

 

 

Red
Member

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Twelve years that's fantastic. Thank you so much for your reply. You give me hope.

Red x

belinda
Member

Re: Bone mets - please join in

Hi Red, just saying Hello and I'm sorry you have to join us. I was diagnosed with bone mets from the start, twelve years ago, 2003. Just had the conventional stuff, no special pills or diets. Hope this might help to know, I'm not posting as much, after twelve years I'm now repeating myself. Smiley Very Happy But just wanted to say Hi and Good Luck with your treatment. X

Red
Member

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Thank you scoobiesue. It helps so much to know others are facing this too. Together we are strong.

springsummer
Member

Re: Bone mets - please join in

well hello everyone. the parp inhibitor trial stopped working after 5 months but boy what a fablous drug! so few side effects - a slight thinning  of hair that is all - well worth it and i hope, the future of all cancer drugs. Anyway back to the present and am know on carboplatin - back with the grownups. Although I am braca 1 and it should work very well for me they are not sure as it is similar to parp drugs so may not work for me! they just don't know yet. Soooo fingers crossed had my first dose today just waiting to feel rotten tomorrow. need to find a really good wig maker. my friends are on the case but does anyone have any recommendations?  much love to all.

by the way talking to my onc today about future trials she did say there were a lot of immunotheraphy trials coming up for r BC. no details but i asked to put me down! she also said there was a lot more new drugs on the horizon so girls - KEEP YOUR PECKER UP who knows what is around the corner

much love again  SS

scoobiesue
Member

Re: Bone mets - please join in

Hi Red. Welcome. The ladies have lots of sound advice. You will find lots of support. I know how you feel as I have been diaognosed only a short time. My oncologist says he has ladies who are still around 15years and more. Hope that is us girls. Take care and be kind to yourself. Things will settle down. xx

Red
Member

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Hi All. I've just been diagnosed with bone mets and have joined this forum today as I'm feeling quite scared. Have been told today I will be starting Vinorelbine chemo next week and Denosumab. Am a bit worried about side effects of chemo as I have had FEC and Taxotere before which were horrendous. Would love to hear some positive stories from anyone who has had this.

Cheers Red

bill-ben
Member

Re: Bone mets - please join in

Thanks ladies I really must make an appointment as I broke a bit more tooth last night shouldn't be eating peanuts. Just bugs me I'm sure it is the tooth I had filled last year which cost me just over £50 and I was only in the chair for a few minutes, I'm going to be a dentist next time round!

I have just had the district nurse out to do my new Hickman line Brilliant ,blood out wash in and no more bruises on my hands!!

Lynnq
Member

Re: Bone mets - please join in

Hello everyone. I have not posted for a while and have just spent an hour reading all the past posts for a couple of weeks. Husband is out for the day so I am just pottering. Our youngest son gets married on Saturday - hope that all of your arrangements are made FF and that you are now having some peace before the action.
Sorry to hear about those ladies who are struggling, love and hugs to you all, I won't mention names because I am sure to miss someone, and I think about you all even when I am not posting or reading.
Also love and hugs to those who are doing okay at the moment....

Just wondered if anyone knows about TMs. My question is do they monitor cancer just in the bones or cancer everywhere. I know that they're often considered unreliable, but they seem to be a good indication in my case, and my onc prefers to look at them rather than scans.......


edwina64
Member

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Hi bill-ben i have just had my wisdom tooth out and had to come off denosemub my nurse told me 6 weeks before extraction and 8 weeks after to heal the jaw bone. I think fillings are ok because it's  the jaw bone that doesn't  heal, but my dentist wouldn't  do any work so onc arranged the hospital dentist to do it.  Hope it goes well waiting for treatment with toothache  isn't great!

 

 

Marie123
Member

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So very sorry this should have been to bill =ben , just not with it ! M xxx
Marie123
Member

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Hi Marirose . I am on denosumab. I have had fillings without coming off it. I believe it is extraction and root canal work that can be a problem. Good luck Marie xxx
bill-ben
Member

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Morning ladies hope everyone is having a good day. It's raining again here in N. Devon totally fed up with it now my flowers are all getting flattened or are rotting being permamently wet. A question:- I know you have to come off Denosumab (sorry if my spelling is wrong) to have a tooth out but what about fillings.One of my fillings has fallen in half though thankfully it doesn't hurt. I'm sure it is the one I had done last year it should come with a guarentee.! Finally have got my Hickman line fitted so no more turning me into a human pin cushion every week when I get my chemo. I look a bit like I have been attacked by a vampire with a  swollen neck and a cracking big bruise but life will be so much easier. I am having the district nurse out to take my weekly blood and give it a flush so I don't have all the hassle of getting to and from the surgery. I am getting some side effects now , within the past couple of days my nails have started to get sore and go a funny colour and I have a teary eye and I leave a cloud of hair behind me where ever I go but apart from that everything is good! Have a good  day everyone.

rosie53
Member

Re: Bone mets - please join in

Hi Edwina, glad you got something stronger to help with the pain and what a lovely distraction having your family come to stay. Well my onc is back from her hols today and i have already been on the phone to her secretary to remind her to look at my TM results!!
Hi to all you lovely ladies hope everyone is doing ok
Hugs Janette x x x
edwina64
Member

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Hi everyone thanks for your support...well tues already and scan on fri...results tues only a few days. My daughter ,her partner and my little grandson are coming to stay from thurs till bank hol monday and then tues will be here. I am sure that will help pass the time. Got stronger pain killers yesterday so trying to be more positive today. Thanks so much xxxxx

Marirose
Member

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Oh Edwina

You sound so troubled with pain I agree with Janette you must see your GP and ask for help with the pain it is far too much for you to handle at this time and the stress you must be going through can you contact your BCN surely they can help you it's worth a try right now you need someone. I hope you can get help thinking of you Heart

 

Love to everyone else xxx

Tournesol
Member

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Hi Edwina and springsummer,

Sorry to hear about your pain between treatments. It's a difficult time. I had the same earlier this year and was also shocked at how quickly I felt bad. But things can improve quite quickly as well. I hope your new treatments go well and that your medical teams are able to help with the pain in the meantime.

Tournesol
springsummer
Member

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Hi Edwina

 

i knowhow you feel! it does come back so quiclky. a rotten and worrying time for you. i'm in a similar boat between treatments and alredy feeling the difference. had to go to hospital as has horrible pains to my liver. they think it is the capsule to my liver being irritated by the cancer. uggh. so many upsand downs.i hope everything gets sorted out for you really quickly.SS

rosie53
Member

Re: Bone mets - please join in

Hi Edwina,  really sorry to hear your struggling with pain at the moment, can your GP  give you some stronger pain relief to use until you start back on your treatment?? What a nightmare you're having at the minute and still struggling with toothache no wonder your feeling fed up!!! Don't know anything about Cape so can't help you with that sorry. 

Take care hugs Janette xxxx 

edwina64
Member

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Hi all. Mariose hope all goes ok with your onc and new treatnent. I feel awful at the moment , because I am off any treatment except hormone pill I have fierce bone aches  and nurse said have to wait 8 weeks after dental treatment for inj...so only 7 weeks to go then!!,l will have been  off the inj for 20 weeks by then. Still have tooth ache and numb lip and headaches now, feeling sorry for myself. Have app with onc next Tues and get brain scan results and hopefully new treatment. Is alarming how quickly I have started to feel awful. People on cape how quickly did it start to work?  Desperate to feel better. Sorry moaning again just can't  tell family I feel bad so putting on a brave face with them . Hopd you are all ok anyone got good news to report? That gives us all a boost xxxxx

Marirose
Member

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Hi Janette and Edwina hope you can get some satisfaction from your onc on Tuesday Janette let us know how you get on. I don't know what they will have got planned for treatment until Wednesday Edwina I see my onc and she will let me know what they decide. But I am still here and intend to stay around for a while longer.

All the best to everyone xx

 

rosie53
Member

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Hi ladies,  Marirose and Edwina, thank you for your advice/ info it eases my worry to know that I'm not alone with these symptoms and that could be completely harmless  (if not worrying) will still feel better once I have been in touch with my onc on Tuesday for TM results and to see what she thinks about my chest.

Marirose  sorry to hear the treatment your on has now stopped working, good luck for Wednesday please try not to worry too much in the meantime.......says me the world's greatest worryer!!! I have mets to my spine and apart from the odd bit of back pain now and then they don't really trouble me.

Take care ladies Hugs Janette xxxxxxx 

 

edwina64
Member

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Hi all...Jannette sorry to hear your worries, I was told three months ago that I had spread to the lungs and as yet this hasn't made any difference..no breathlessness.  I have been on denosemub for 18mths but had to stop it to have my tooth out. I have really noticed the difference with a lot of pain 

in my ribs and back so can't wait to start it again but my nurse said have to wait 8 weeks after dental work. Hi Mariose sorry to hear your  e/e combo has  stoppped working so did mine and now I am waiting to go on to cape but have to wait till tooth heals up. Its seems ok a bit sore but still have numb lip and chin which is painful cos of shooting pains all the time. I am having a brain scan next friday so worrying what that will show, and losing weight but probably not eating much because of my tooth. Have you had cape yet Mariose?  sorry to hear you are still in pain ff hope it gets sorted soon, a few days in pain feels like weeks dosent it? Have a good w/end everyone keep posting xxxx

Marirose
Member

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Hi Janette sorry you are feeling down it was a good idea to do some baking to cheer you up well done. I am on Denosumab been on it over 2 years the nurses had not heard of it before as it was new out then. I get breathless at times and have an irritating cough also a dry mouth which normally brings on the cough I often wonder if it is sinister infact I once had a chest x-ray which was clear so you are not on your own. As Mermaid said you could be looseing weight through worry so get baking and you may put the lost weight back on. Good luck x

FF so sorry your knee is still not fixed I hope the wedding preparations will help to take your mind off the pain a little Bless you x

Edwina glad you have some relief from your tooth problem hope the rest will turn out ok for you x

After being on the e/e combo for 15 cycles of meds it has stopped working I have progression in the spine from my met in the sacrum doesn't sound too good but I will wait until Wednesday to find what treatment they will put me on and just how bad it is. So I am fighting with my thoughts must stay positive and make the family thier piccalilli preserves.

 

To all newbies welcome you will find lots of nice ladies who have lots of knowledge here x 

rosie53
Member

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Mermaid, thank you so much for that, I vaguely remember reading something about denosumab causing breathlessness when I first started on it last year, have calmed down a bit now.....did some baking yesterday to keep my mind occupied which was a challenge as I am no cook but I enjoyed it and it turned out pretty good 😉

Hugs Janette xxxxxxx 

Mermaid007
Member

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Hi Natalie,

Sorry to read your worries. I note you take Denosumab. One of the side effects is wheezing shortness of breath and cough. Maybe this could be the cause? Also, it's easy to drop a few pounds if you have been worrying. Hope you feel better after speaking to Onc.

take care x

rosie53
Member

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Morning ladies, hope you're all keeping well.

FF, sorry your struggling with pain at the moment, but the up and coming wedding is a great distraction for you!! 

I'm still waiting for TM results, this cough is really beginning to worry me now, keeping worrying I have spread to my lungs,  I have just weighed myself and I have lost 4lbs this week which is making me worry more 😦my onc is away til Tuesday so can't speak to her, my hubby said to go and see my GP but I don't see the point really. Any advice on what to do ladies??

Hugs Janette xxxxxxx 

belinda
Member

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So sorry to hear of the pain FF. It's so debilitating but these next few days will be such a very happy distraction for you. Smiley Happy 

Have fun, how's Ross coping with all the wedding prep? X

funnyface
Community Champion

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Belinda, Glad you're OK. Went for 2nd opinion on knee. The knee is shot and scoping it like 1st dr wanted to do won't work. The meniscus is in too bad of shape to fix. So did a cortisone injection and going to do gel injections to buy time to lose some weight. Hoping to be able to replace it by late spring. Praying these injections will give me some relief. The pain is wearing me down. On the fun side. We picked up our gowns. Sunday we are finishing up some projects. Bagging up some goody bags for over night guests. Finishing up wedding favors. Putting together bows for pews. Rehearsal is next Thursday. Nails and church decorating Friday. I still need a purse. I'm on vacation starting Frida, so if we think if anything else I will be able to taje care of it. They couldn't get next week off plus 2 weeks for honey moon. I told them I could get off to tie up loose ends. I can't wait!!

belinda
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Hi there FF, I'm fine, thanks for asking. 🙂 Just taking a back seat at the moment, feeling a bit forumed out. 😞 A little wedding present should be about half way across the pond to you. Not long now, hope you are feeling less breathless, knee is stable. X

funnyface
Community Champion

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Belinda, You have been a quiet one. Hope you are ok. FF

funnyface
Community Champion

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Edwina, I'm gkad you got that pesky painful tooth out! I'm nit good with tooth pain! It's funny what pain one can tolerate and what they can't. FF

Jam
Member

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At last Edwina take a great sigh onwards and upwards now. New treatment soon.  Sending love and hugs xxJanetxx

kittycat40
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Thank you Nicky......I think I have only come across 1 lady on this forum who had SIRT. Will post when I have had it done. I have caught a rotten head and chest cold (from Hubby.......although I wld like to say wish it was from James McEvoy......will bring him to the cafe!!) so it explains the headaches etc. Love to all you lovely ladies xx