Oh Wandy, I am sorry to hear about your MRI. I want to believe that two of our number cannot get bad news in the same month. Good luck.
Still shell shocked. I don't think it has hit me yet.
Damn and b****r. So sorry to hear your news. Have you got good support outside of us and the bone mets board? Please stay with us here and we'll keep you company. Sending loads of hugs and prayers.
I too have been having a scare and am in the process of having a referral for a MRI.
Take good care of yourself.
Much love to you
I just had a phone call from the GP. It is the worst news. The cancer has spread to my pelvis, specifically the area of my sacroilliac joint which showed deposits on the scan. I have been given an urgent referral to the oncologist and will hopefully see him on Friday afternoon. The GP asked if there was anything he could do now and I asked for some stronger pain killers. Currently I am taking the weakest dose of paracetamol and codeine available. He is also going to give me some strong anti-inflammatories.
Heading over to the bone mets board to canvas them for their experiences but will continue to post here and keep you up to date. I am hoping to get some decent pain relief and some stability so that it doesn't spread further.
Had my MRI this afternoon.Results by the end of next week. Please keep your fingers crossed.
Thank you everyone. The hospital just called and my MRI is booked for a week tomorrow. Earliest slot they had for outpatients. I will be so glad when I know the results, one way or another. Feeling a bit more positive today. I think I went into a spin yesterday when they called me at 6 yesterday evening and said they were going to schedule the MRI because they weren't happy. They didn't mention anything at my appt. but made the decision after I left so I was taken completely by surprise. My back actually feels a bit better today and I have managed not to go near the painkillers. Amazingly I slept well last night, too.
How very worrying Cherry - no wonder you're frightened. Hopefully it will all be "just" normal, but do have a virtual hug...
love Jane x
Still having problems with my back and saw the physio again today. They aren't happy with the speed at which my back pain is resolving and they have referred me for an MRI. The Xray I had before starting physio showed no evidence of metastatic disease but they want the MRI to rule it out completely. Feeling frightened. Keep your fingers crossed.
Good to hear from everyone! Yep, it's that time of year again... check up next month.... not phased about it though, thankfully. And I go days without thinking about "it" (though I can't forget the lymphedoema!) I went on a "cancer survivors" course... well, I went to one session! Everyone in the room was defined by their cancer and couldn't move on....
Bev, you must be sick as a parrot about your hair..... I don't think anyone ever warned us it might not come back. Different (yes)... but there, thankfully. Poor you!
I can't cope with the thought of reconstruction - more surgery, more pain, more time off..... but it depends whether being boobless is worse than the above... which for some/many it is... we are all different... Hope you get on OK with the PS Ninja...
How's the sorting Wandy?
We had some sunshine this morning! Yay! then it went..... nice while it lasted...
hope Harp's OK...
love to you all - and my deep gratitude for your company as we travelled through that difficult journey...
So lovely to hear from you Beverlie. Sorry you are still having hair troubles, I agree with Mandy...don't give up the Tamox. We are loving living up here and you must get in touch when you are up and we will definitely get together for a beer!
I was offered a back flap but refused it as I already have arthritis in my spine and my Ma developed scoliosis so I wanted my back untouched. My BS only did that sort of recon so I had to be referred on to a PS which delayed things by months.
He did the left reduction first which REALLY helped me to feel better - less of a difference. The TE is OK but it got slightly overpumped in the end so I have a little sore place on it. I have to change the dressing every day, use Sudocrem on it and leave it without the dressing now and again to help it to skin over - it's just a small soggy scab.
I'me seeing the PS on Monday and I may have to have the recon brought forward - it's due on 3 March - if it looks lke the skin is breaking down more seriously.
Some people end up with a silicone implant inside the skin but I don't have a pectoral muscle left to tuck it behind so he is doing a DIEP and stealing tummy fat and stuff. He may not need the actual tummy skin.
How's the recon going Ninja - I'm still putting off making that decision, don't fancy the back flap, which is my only option apparently... with sore ribs and still wearing my softie pinned into a bikini top (can't make friends with prosthesis or mx bra's being too uncomfortable)....I would love to know how the expander procedure is going. I'll need this if I decided to go ahead with it all.
I also developed lymphoedema (following an insect bite whilst on holiday), so just struggling to manage that in my bad arm.
Hair - apart from lack of it on top still, i mainly wear baseball caps and still have to wear the wigs........ there is no hope on that front anytime soon - chemo induced alopecia apparently.............. stopping tamoxifen may encourage the hair, but the chances are slim to none.............
E-mail alerts - I've not had any - need to sort out how to get those.
Wishing you all the very best for 2014
Hello lovely May ladies,
I haven't been on here for ages but have thought of you all over the past year or so since I was last on here.
I'm going to go through the thread in more detail to catch up with how you're all doing.
Wandy - Hawkshead - brilliant - we have a place in Torver, just t'other side of Coniston and often nip up to hawkshead for some chutney tasting at the relish company - we're there every 2 weeks or so in Winter and every weekend in the summer (my other half likes to fish and sail on coniston). We went to brantwood the other week, our friend is an artist and has an exhibition on there at the moment. Would love to meet up for a coffee or a guinness some day.....
Glad to find that some of you are still on here as thought I may have lost touch with you all.
My news - hair still not come back, just had all clear from bone scans and mammograms following minor scare (paranoia) before xmas, still not working, aching and hobbling like a 70 yr old, not gone through menopause (was told I had) so keeping on Tamoxifen and the wonderful gifts that keeps on giving...
Will post again when i get up-to-date with you all.
Good to hear from you..glad you had a good Christmas but sorry to hear about your back pain. I too have constant aches and pains but have just learned to live with 'new normal'!!
Can't believe we have only been in our new 'wee' house for 3 weeks..it feels like forever although we are still dealing with rationalising our 'stuff'!! We got rid of loads before we moved but the cancer charity people are going to get loads more!!
Hope everyone has a lovely New YEar's Eve, whatever they are doing...hope the weather calms down a bit..we've had it pretty wild and wet up here and were without power for 24 hours but all ok now.
Here's to a great 2014 for us all!
Sorry I didn't get here before Christmas to wish all of you the very best but I can certainly wish you all a very happy and healthy New Year.
I had my grandson, etc. here for Christmas. They went home yesterday. I am exhausted but happy. Just found his little tractor under a footstool. He can have it back when he visits again in March.
Congrats are in order for Ninja and angielav. Well done on your fund raising for Macmillan. Fingers crossed that your reconstruction goes well, Ninja.
Wandy, I hope you are enjoying your new home. The Lakes have beautiful scenery but the area around Hawkshead I remember as particularly lovely. When I downsized after my divorce, I found it liberating, too.
RockingRev, I agree with the adjustment to the new normal. I don't think it is as good as the old normal but I have learned how to live with it.
I have been having trouble with my back. They X-rayed it and said I have degenerative changes in my lower back which are probably causing it. I have a family history of osteoporosis and I suspect the anastrozole isn't helping. Most of the pain is associated with the sciatic nerve and I am quite miserable with it some days. I have an appointment with the physio next week and hope to get some relief soon.
Love to all, Cherry x
Hey! Good to have a little chat. I guess we've all got email prompts for this thread! Works a treat!
Delighted to hear you're all doing well - I am too, and the body seems to have got used to the Letrazole side effects by and large, so that's a relief. I don't think I'll ever be the girl I was, but the "new normal" is OK...
The get together sounds fun Ninja, and a goodly sum to raise too.
Busy few days coming up for me (surprise surprise) but son & daughter-in-law are coming home from Newcastle tomorrow - first Christmas with us for years, so I'm really looking forward to that. Daughter & her partner join us Boxing Day, (and I am NOT on call then!) so much alcohol, good food and good company to look forward to. You'll miss your Mum Wandy.... You are finding downsizing LIBERATING? Please tell me how!
Have a great Christmas (or Yuletide)... we had a box of chocs from the Muslims who use the Prayer Room today, which I thought was lovely, and a card from some nurses to "The Rocking Revs" - made us laugh....
Take care of yourselves
Merry Christmas and Blessed Yule to all the May Girls!
Angielav and I organised a big ball to raise money for MacMillan - we raised 7k - and we managed to get several May Girls together for the first time for a photie - Angie, Harp (Rach), DJ (Di) and me - Angie, Di and I had met up a few times before but it was the first time we'd got Rach out so it was very special.
Wandy - got a spare room for me? lol
I'm getting on with the recon routine - a month back I had a reduction on one side and a tissue expander on the other. I'm getting pumped up with saline weekly and I'm as tight as a drum
Keep smiling guys xx
Merry Christmas May Girls,
Doesn't look like we come on here much but you are in my thoughts especially at this festive time. About 3 years since we were all dxd....amazing where has the time gone.
Hubby and I took bull by proverbial after Mum's funeral and decided to move and we are now settled and hope never to move again in the heart of the Lakes. Just outside Hawkshead within 10 mins walking with all its attendant hostelries and great hill walking. We moved 2 weeks ago and are already getting settled and have made the house very Christmassy. It is much wee'er than our last so we are very liberatingly getting rid of loads of 'stuff' too!
I hope you are all well, I am although still with loads of aches and pains but just live with it now and eat lots of pain killers!!
Hope all of you have a wonderful Christmas, ours will be quiet, peaceful, reflective (missing my Mum), but joyful too. Much love to you all
I am so sorry to hear about your Mum, Wandy. I am glad that her end was peaceful and hope that you were able to share some happy memories with her before she died. Let us know how your search for a new home goes. Are you planning on staying in the Lakes?
Jane, glad you have finally got a "boob" you are happy with. It must have been so frustrating wearing one that was neither comfortable, or well fitted.
Ninja, I am on anastrozole and the pain in my joints, especially my wrists, some days is unbelievable. It feels like they are both sprained. I have stashes of ibuprofen and aspirin all over the house. You put up with it because the alternative is worse.
Mandy, my hair is thinner, too. Unfortunately it is not straighter; it is absolutely wild. Never been the same since the chemo. I have cut it shorter but I still look like an aging punk some days. Maybe I should start colouring blue or green the bits that insist on sticking out at right angles to my skull.
Harp, Like you said, most of the time I am fine with listening to other people's cancer tales but there are times I would rather gnaw off my own arm than hear the details.
Love to all, Cherry
PS. I just thought I would give the spell check a go. For anastrozole, it suggested ancestrally. Really?
I have been unable to get onto the site at all but have finally succeeded and it took me ages to find you all. So glad I did. Wandy, I was so sorry to hear about your mum. The funeral sounds lovely and I hope you are okay. It's so hard losing a parent isn't it?
Too much going on for me to comment on everything I've missed but i have enjoyed reading everyone's posts.
I have been really busy at school as usual but am fighting fit-though I get a lot of aches and pains I never got before and i don't have the stamina I used to have-nor the hair which is much thinner and almost straight!! My eldest daughter is 18 in a couple of weeks so we are planning celebrations. Her 17th birthday was the day they told me (incorrectly happily) that I had ovarian cancer so I am determined to make her 18th really special.
Like the rest of you I get people talking to me about BC and every other cancer. Most of the time I'm fine with it. What gets me is all the pink fluffiness in the shops in October-but I suppose it raises awareness.
I will endeavour to come on a bit more often now. Missed you all
Lots of love
Interesting Ninja, that u changed to Examestane after 1 year because of risk of recurrence. Why? I assumed that's why any of us take either Tamoxifen or an AI?
I was changed after only one year because my risk of recurrence was 80% within 24 months. Most folk have a risk of survival of 80% in 5 years. Big difference.
Why is Examestane better? I'm all mixed up again now!
It's better because it is the next generation on from Tamoxifen - which is old technology. Oncy told me that Tam is powerful, but AIs are even more powerful.
But they have more horrid SEs. Exemestane is the one that allegedly wouldn't irritate my fibromyalgia as much as the other two AIs. But even so, it's almost unbearable. The pain is just sickening.
I got changed to Exemestane (Aromasin) after only one year because of risk of recurrence.
It's rotten! My hair and face are permanently greasy, my aches are ten-fold and my fushes are much worse. But I'm afraid that I wouldn't get the same protection if I changed back to Tamoxifen which was MUCH more liveable with...
I get notifications about this thread so I saw that you'd posted. So sorry about your mum Wandy.
Any idea where you are moving to? We just love it in a village near York - should have done it years ago but it would have made commuting difficult I guess.
Three weeks today to my first new boob op - I'm having a tissue expander on the naughty side and a reduction on the good side to make it easier to find a easy size to grow to. In a couple of months I'll get the space filled by tummy fat. He has built in various fall-back options like stealing my tummy skin if my skin doesn't stretch enough and even going to plan A - the back flap if it all goes t*ts up. Excuse the pun.
Take care all xx
Hello all my May girls,
Can't believe I haven't been on since end August. Its been a rather hard time and culminated in my darling Mum's death on September 24th. She went peacefully in the end after being in a coma for a few days before finally breathing her last. I am heartbroken but coping. As we all know its a time of lots of admin which sort of masks the grieving process for a bit. We had the funeral on 8th October and now having done the round of solicitors/banks/pension people I have a bit more time to reflect. I shall and am missing her terribly. She was a great friend as well as a great Mum and we were very close, especially with her living with us for the last 3 years. She died with great dignity, however, and i am glad that her suffering was not prolonged. I managed to give a eulogy at her funeral which I was so worried I would become too emotional in, but I managed and tho I say it myself it was a great send off. Lovely music, Benedictus from Armed Man by Karl Jenkins, Faure's In Paradisum, Psalm 121,lovely readings, including the Henry Scott Holland piece "Death is nothing at all" and The Bishop Brent piece, "A ship sails", 2 great hymns and one of her favourite light poems 'When I am old, I shall wear purple...'It was a very emotional affair. My nephew did one of the readins, so did my husband and my stepdaughter.
So life goes on, ~I feel a bit numb and ccan't quite believe she is gone. We are going to move again tho. This house is too enormous now (we had virtually a separate wing for Mum), and I find I can barely go into the rooms and they are wasted space...so looking for a new home should keep us busy!
Hope all of you are alright. Will try and come on a bit more regularly now to keep in touch. Much love to you all.
Hope you are all OK and looking forward to the upcoming holidays. Sorry, if I have mentioned it too early for some. I have just got back from JL who have had all their Christmas things out for several weeks now and then drove back through the village where they are putting up the Christmas decorations already! Looking forward to Christmas this year as my grandson will be a little short of his 2nd birthday and able to enjoy the magic in that special way only a young child can.
The work on my bathroom is finished and my bedroom redecorated. I am so happy with the result. New paint and carpets. New bathroom suite. I walk in and feel like I am in a hotel. The only thing that is missing is room service... and I am working on that!
Wandy how is your Mum? And how are you? You have been in my thoughts as it was this time last year that my mother passed away.
Mandy, I trust that your check up went well. Always a weird experience walking into your place of employment as a customer rather than a worker.
Love to all, Cherry
Jane, Having to talk to people diagnosed with BC is just one of the many side effects of the disease. Worse for you as it is an extension of your work so you never feel as if you can have a break and get away from 'office'.
Since being diagnosed, people who have cancer or know someone with cancer feel they just have to tell me all about it. Some times I feel strong enough to listen and nod my head as appropriate but other days I just wish they would go away. In the latter group, I include two men who 'had' to tell me about their biopsies for prostate cancer. Not at all pleasant but it did allow the dr. to get to the bottom of things if you get my meaning. So far no one has come forward and told me about their pet's cancer but I am sure the day will come.
I still have not received any money from my mother's estate but I hope to soon and on the strength of that have today started stripping out my bathroom completely in preparation for having all new tiles, floor, sanitaryware, etc. This afternoon they have been ripping the tiles off the walls. A short time ago there was a tremendous crash and all the plaster and render on one wall fell off, exposing the bricks. I may have blown the 10% contingency built into my budget and this is only the first day.
Thinking of you Wandy and hoping everyone is well.
Thanks for that Cherry....
The recent "joy" is that I seem to be acquiring people locally who are diagnosed with BC, and want someone to talk to.... and listening's what I do, and you've been there, so you don't mind do you? Well, no, at one level, of course I don't, and if it helps, great.... At another, it's like an extension of work in my "free time"....
Ah well, I'm lucky that I'm well engough and OK enough to do it....
Thinking of you Wandy... have a hug <<< >>>>
Wandy, I am so sorry to hear about your Mum. I hope that both of you are able to share and make happy memories in the days ahead.
Jane, I find I cope best when I don't have anything to remind me of 2011. I think having the wrong size boob and having to wear it everyday would drive me insane with anger and frustration. I don't think you were being stupidly upset.
Ninja, Like the sound of the tummy tuck and boob job combined. Hope your appointment goes well. Can't believe you have had to wait so long.
Wave to everyone else. Hope every one has been enjoying the lovely summer weather.
Lots of love to you and your mum. It will be a very sad time but you will also think through lots of happy memories.
I lost both my parents suddenly it that was also hard xx
Well, what do we think of the new site?? Haven't really had a good look at it. Like the font type tho!
Good you are getting on with the next stage Ninja and lovely to hear about your cruise Mandy. Also good to hear from Jane, Jude and Cherry! Hope everyone is having a decent summer. We can't complain tooooo much about the weather!
I'm in reasonable form. Have been fiddling around with my drugs. Started on Letrozole...terrible joint pain, switched after 14 months early this year to Anastrazole...not much better, so then switched to Tamoxifen, despite the fact that I am post menopausal, which was why I was on the AI's to start with....Have been on the Tamoxifen for about 6 weeks now and at first thought i was going to have to give up immediately. I felt like I was permanently about to have the period from hell and that my insides were about to fall out, the joint pain was no better and on top I was also having terrible headaches and much more flushing!!! However ~I have stuck with it and ....(Shhhh....she whispered!!...) things may be improving....so we'll see.....Having another review in October and will decide then which one of the 3 I'll stick with!!
On another front I am having a very sad and difficult time. My darling Mum who has lived with me and my OH for a few years now has been diagnosed with terminal colon and liver cancer. I took her to doc with bad chest and poor breathing, she was rushed to hosp and after xrays and scans they discovered that along with her pneumonia she had multiple advanced lesions in her liver/ colon and looks like her lungs as well. She is finally stable after weeks of trying to get her on the right combo of drugs. We haven't got long with her but we are trying to make her final weeks joyful, full of laughter as well as tears, reminiscing, putting her affairs in order etc etc...It is very hard for me but I am glad to do it for her.
So my life at the moment is really 24/7 care for my Mum. We were scheduled to go to our place in Turkey in a couple of weeks but have cancelled that, sadly losing the ticket money...but would not do anything different. We are very lucky here to have the most wonderful GP team/ district nurses and Macmillan team so I have wonderful support and as I had 2 years ago going through my own treatment have also got the most amazing OH.
I also thank God every day that we are not in France any more......
Anyway, love to you all. Still think of you all and hope you are all well.
Hi Folks, me again.
I've been to see the BS about the recon I am finally allowed to have. I don't want to have my back fiddled with as it is already damaged so I'm hoping to go down the tummy route. I have been referred to a PS - appt at the end of Sept.
Hope everyone is OK xx