May Moonbeams

[Rara]

Hi everyone!
Thank you for sorting out a venue for Sunday Alyson. Looking forward to seeing you. Sorry that not everyone can come but agree that Norfolk would be a good idea in the summer holidays....
Jo, I am so pleased to hear you are doing well and moving on.
They tried to do a hysterescopy but it didn't work as they couldn't get through entrance to womb as blocked so I have to have it done under a general on 26th May. Also, seeing oncologist tomorrow as gynae have advised him that my results of scan show stage one endometrial Cancer and this is before I have even had a biopsy. I also have a cyst in right ovary which is fine but I am hoping they will whip the lot out ASAP!
I am not worried as gynae consultant is convinced it's a new primary Cancer and not a secondary.

Talking of secondaries, I also know that Karen is rooting for us all.

See some of you on Sunday

Xxxx Rachel

[Aly1971]

Hi all just to say I've sent an email out to everyone about possibly meeting up the 17th - Dodo I've included you in the mix but totally understand if you want to pass. Wow we have all come so far it is wonderful, I do think about Karen a lot - it feels so surreal that she's not with us, but she'll always be a part of us.

Lots of love to you all - I love hearing so much good news (cellulitous aside Zuzy).

Aly xx

[Zuzy]

Great news! My hair is still curly (although at the moment I'm still quite liking the change!!)
I'm off work with cellulitis, didn't realise it made you feel quite so bad! Lying here has made me realise that 2 years ago I was lying in the same place following chemo 1.......it's our 2nd anniversary moonbeams so let's celebrate how far we've come (and raise a glass to Karen) Hopefully see you all on 17th. Xx

[barbara2013]

Really pleased for you Sarah. I actually quite miss my curls as i have returned to straight brown (with grey too of course)!

Good to hear from Jo too and she is obviously moving on positively!

[mills1]

Hi all, wanted to share good news, I had my yearly check up today and after a week of worry (had some breast pain and had a swollen area) nothing suspisious found. Just had an examination, no mamogramme because i have MRIs. So, very happy days. Also thought i would say for those of us on tamoxifen, after a year and a half on it i can say the hot flushes have subsided, some days none at all. Hope you are all ok. thinking of you all xx PS still waiting for hair to grow down and not out with curls lol

[Dodo14]

Hi guys,

Sorry I haven't popped on for a while but I have tried to stay away - kind of a New Year's Resolution to move on.  However, I do pop in and see how you all are from time to time and there seems to be so much going on I thought I needed to say hello.

I had extremely heavy bleeding about a year ago and was referred for a gynaecological investigation which ended up with me having a biopsy as I had thickened womb lining.  It turned out to be my periods returning and nothing to worry about.  Since that first one, the bleeding had not been as heavy (even as it was before) but comes regularly every 26 days! 

I have also been back in the waiting room recently having had lower back pain and numbness/tingling in my leg (one side only).  This had all the signs of being sciatica and is gradually improving anyway but I was sent for an xray to exclude bone cancer.  Literally, just got the results and all looks ok - phew!

My lymphodema is well under control with the compression glove and daily exercise routines and I am now self-managing this.  Sorry to hear yours has got worse Marie - good news about your early retirement though.

Anyway, just a note to say hello and let you all know I do think of you all the time.  I probably won't be back for a while but you are and will always be close to my heart.  Love to you all.  Jo x

[Aly1971]

Hi everyone,

Sorry I've not posted for ages I have been popping in to see how everyone is and as there's been a flurry of appointments and a few worries I thought I'd pop my head above the paraphet and say hi.

Sorry to hear lots of us are having gynea issues at the moment - Sarah I'm glad you asked about symptons I haven't even thought about the womb lining issues from Tamoxifen and wonder how they monitor it - I guess no symptons is a good start, my periods started again in November 6 weeks apart but have now stopped so god knows whats going on. No spotting or pain though so assume all is ok.

We've just got back from a fabulous family holiday in India - Goa and Kerala, it was really beautiful and apart from all the internal flights, really relaxing.

I'm still good for the 17th May, I don't think we've got as far as a venue yet but maybe I should message you all when we have final plans, Marie & Penny totally understand you not wanting to travel but sorry we won't be seeing you. I would love a meet up in Norfolk - maybe over the summer holidays and I could combine with a few days by the sea with the kids?? Just a thought.

My other news is that I have been training for a 1/2 marathon - wow I would never have contemplated such a thing before my diagnosis so maybe one good thing has come out of it. Its on the 10th May which felt like an appropriate enough date - 2 years on and all that. Anyway it makes me realise how far I've come in 2 years.

I've got a little bit of lymphodema in my hand and lower arm now - god knows how it happened, just appeared one day so I'm being referred to the clinic hopefully it can be managed. Marie I think its amazing how effective the bandaging has been even if it is a total pain in the bum.

Also congratulations Marie on retirement and such good news about getting a bit more pension too. 

Good luck to anyone with tests / procedures / scans coming up and yay to all the good results.

Love to all you moonbeams and hope to see some of you on the 17th.

Aly xxxx

[Penny47]

Aww Marie I wish I could retire on ill health grounds.  My fault for working in two part time jobs one of which is casual.  All this gynae stuff is terrifying; i had spotting during chemo and the GP said wait and see if it happens after you finish.  So far so good.  My age is in my favour here ....makes a nice change. 

If I hadn't had the Dexamethasone after chemo I would be stressing this week thinking I was heading for a breakdown.  It's the strong steroid inhaler to blame.  I've been very jumpy and oddly sensitive and my dreams have been really odd but hilarious.  If it wasn't for the lovely weather and all the fresh air I might well have gone under but at the moment I can still manage to focus.  Which as I'm doing OH's work as well as mine is pretty important.

The inhaler works by the way.(yay!)

17 May ....I was really looking forward as there was an event in London I wanted to go to but OH will be just out of his sling and I will still need to be on hand to care.  He did look after me so very well for those months of chemo so it's my way of helping in return.  I really will miss you all, and I was looking forward to getting to the big smoke after 3 years away. 

About osteopenia and the hormone therapy; I get a Dexa scan every two years. (and BTW my scan this year was a bit improvement on two years ago!)  OH is 78 and he gets a bone density check too.  Which by NICE guidelines seems to be a counselling interview with a nurse who puts him on calcium tablets.  !!!   Can't wait for that.  We have resolved to eat more yoghurt.  You can get yoghurt which contains your RDA in one helping and it does not have the usual side effects.  Pass the prunes, Ta.

I've just had a thought; maybe we should meet up in or near Norwich sometime near you Marie and we could go up to one of those fab beaches in Norfolk; my YD was there last month and had a great time.  Just a thought for next time! 

PS don't take Rachel's concerns about her Scrabble score too much to heart; she's a wicked player! I have scars to prove it!  And Barbara; my chemo brain is still to the fore.  My iPhone is my brain these days.  When it ran out of juice resterday I had hysterics!

[barbara2013]

Sarah- my symptom was spotting too.  My appointment was brought forward to today and I had the scan, womb lining 15 mm.   They do not seem concerned as this is what tamo does. Will have hysteroscopy to make sure, which is the procedure I am a bit worried by.  But will not have until returned from holiday in May. They are looking after us well, but I had the scan on the same ward where I had my mastectomy and it brought back how distressed I was then.  Still also shows how far we have come. Hope all goes well Zuzy and Rachel and congrats to Marie on retirement.  Hope others can make the 17th.  Xx

[nanniereeree]

Mine was because of spotting. Yes you should mention it just for your own peace of mind I know what it's like ..well I'm all clear for the next year 😊 and my pension came through so it's win win at the moment lol xx

[mills1]

Hi all, need to ask; how did your womb investigations come about? did you have pain? I have had a little pain over the past few months but haven't mentioned it to anyone, do you think i should?

Hope things go ok for you all, thinking of you, love and hugs, sarah xx

[nanniereeree]

Would love to meet up but just can't contemplate London with my walking at the moment. Just had good news I've been accepted for ill health retirement so I get a little bit more pension so I don't have to worry about that now.
That's what I had Rachel under general. It showed no significant changes. But I also have poly cystic ovaries I wish they would just whip mine out...
Marie

[Rara]

Crikey what are we all like!? Good luck ladies for all your appointments this week.
So, I do have thickening, it's 6 and it should be 4 or less, millimetres. It looks like hyperplasia which is overgrowth of cells but not Cancer thank goodness. Although am having a hysteroscopy (camera) and biopsy next week to be sure. Said they will talk to my bc surgeon and oncologist and decide if I should stop taking tamoxifen but they are going to give me hormone tablets to prevent any more thickening, depending on results of biopsy. Also, the consultant couldn't believe I haven't had the braca test in light of my family history of bc so she is speaking to the others about that. So all a bit up in the air. But in good clear news, the cyst in ovary is just called a Simple cyst and nothing to worry about. They want to prevent me having a hysterectomy due to my ridiculously low blood pressure and my comprimised immune system. I would prefer to get shot of the lot but I am not the doctor!!
So good luck to you for appointments this week ladies and please keep us updated.
Also, are we meeting on 17th May?

Love Rachel xxx

[Zuzy]

It's the week for follow up appts, I'm there tomorrow because they want to change me from tamoxifen to Exemastane now they've decided to keep me on zoladex for at least another 2 1/2 years, whilst I don't like tamoxifen I know where I am with it send am a bit worried about changing yo something new. Whilst there I am also to broach getting ovaries removed..... Keep smiling moonbeams xx

[nanniereeree]

Barbara don't worry about it hurting I think it was because I have been celebate for over a year lol blush blush
With my hip sex has been the last thing on my mind..
I have breast clinic appt tommorow to get mammogram results.
Still struggling with walking as knee kills back at slimming world to try no to defiantly get weight off...

[barbara2013]

Oh Rachel isn't it maddening! I was told had womb thickening due to tamoxifen.  I am really hoping to continue with tamoxifen because I feel it is what will save me from cancer so worried about this.  Please let me know how gynae appt goes and if it is difficult,  I have appt on Thursday. Sending hugs.

[Rara]

What a bunch we are! I am back in the waiting room, appt with gynaecologist tomorrow following pelvic scan which showed thickening of the lining of the womb and a cyst in one ovary.
Definitely got chemo brain too! I couldn't remember my password for this site and I keep losing at Scrabble!
Love to you all xxx
Hope hubby is being a good patient Penny

[barbara2013]

Hi Sarah I realised i have got a sample of your book " Brain after chemo" on my kindle but genuinely can't remember how it got there! So my memory is still awful and i feel I have to keep checking any type of information because I can't trust myself to recall it. The London date was suggested by some on Facebook but has not been followed up yet so will definitely come on here with information about it if looks to be happening.  

Marie, pleased to hear the swelling improving and you can relax about work now. Like you I have been sent to gynaecology following some minor spotting last week - felt I had to report it and have been fast tracked for investigation. So fed up to be hauled back in again and worried about appointment this week as I know you found it painful. Do I need a sedative of some sort? Did they give indication on the day if anything of concern or is there  a wait ?

So want to get away from hospitals!

Penny hope you are feeling better too and all other moonbeams as it is pretty quiet on here. Xxx

[nanniereeree]

Sarah they suggested meeting in London but I won't be going can't contemplate a trip to London yet...

[Penny47]

Possible reunion being mooted.  I don't think it's fixed yet.

I am pleased to learn that my lungs are clear and there is no evidence of damage!!! I have a nifty little inhaler though, much smaller and i can puff whenever I like.  That's good as the air is very thin up in my office!

OH has fallen and broken his arm, which is quite disabling as he uses a walking stick and pulls himself about quite a bit.  I am his carer which makes a nice change.  He never had to dress me though!

[mills1]

What's happening on the 17th?

[Penny47]

i accidentally posted this twice so I'll use the space to wish us all congratulations as we enter our third year as a group!  Well done Moonbeams, keep on keeping on!

[Penny47]

Go Marie go!  And don't forget to switch off the machine!

I am having breathing problems. I've had two chest infections since Christmas and two courses of steroids for what we thought was bad asthma, but I still get breathless doing the slightest little things, like walk up flights of stairs or even up the hill to  my house! My GP is doing spirometry on me on Wednesday to see if I have lung damage from the radiotherapy. (He's the one who is very sceptical about the damage caused by cancer treatment- I geuss he has to mop up after the specialists at the hospital!)  I'm just gently trying to get back in shape- I had 2 weeks off work (one was our holiday which I slept through most of) and hoping I will be well enough to see you all on 17 May.  Anyhow this is a good day; despite the rain there is a lot of fresh air about (only I wish it would slow down a little) and I managed to sing hymns at church properly for the first time in weeks this morning.  Just in time for Easter.  Don't eat too much chocolate, Moonbeams!  And have a great break!

[nanniereeree]

Ah yes but Rachel is in love again lol... Seriously my arm has gone down by 5 cm in a week 😊 and I'm back at slimming world and lost 5lb, probably the fluid but it's still gone and I'm not carrying it around anymore lol 😜😝 Oh yes one more thing I'm signed off till I finish 😊😊😊😊

[Penny47]

My scrabble score took a nosedive when I had chemo.  It has been gently floating upwards but is nowhere near where it was.  One of my opponents however (you know who you are Rachel!) doesn't seem to have this problem!  Seriously though I am finding it a struggle, and there are still stamina issues too. Abd yes- definitely health first, work second.

[mills1]

Sorry to hear this Marie. yeah health first and sod work. I do hope the bandages help. must get together again soon and have a catch up. sending love and hugs xx

[nanniereeree]

Hi Ladies,

Things just get better and better (sarcasm intended) I an now having to have my right arm compression bandaged for a couple of weeks so I am off work again as that is not helping.   I only have 7 weeks left to work but Im blowed if I am going if its going to make my Lymphodema worse....

[mills1]

Hi all, In answer to my own question, I found an informative book called 'Your Brain After Chemo' by D. Silverman and I Davidson. Although written in 2009 it explains that many people can have memory and concentration etc difficulties for years after chemo. So i'm not going mad lol. Take care x

[barbara2013]

Hi Sarah- really pleased your scan was clear. I still feel my brain is less efficient than before- memory and ability to concentrate or follow things.I don't think it's just getting older ! Haven't asked about it recently and I guess there's not much that can be defined.  Hope all other moonbeams doing well. Xx

[mills1]

Hi all, so glad your scans were clear. my MRI was clear too. Still show a 6mm growth on right breast but because it hasn't changed in 2 years they say it must be benign.

Want to ask'; do any of you still have problems with concentration and memory. I do and was wondering if it is effect of chemo still.

Take care all xx

[Penny47]

Yes Jane, it is...every little twinge I wonder if it's Chemo SE's or just me. My GP is very patient.

[JaneyW]

Annual mammogram last Thursday - all clear! (Not that I thought it wouldn't be, but there's always such relief when it's clear). I've got lymphoedema of the breast though, so trying to find a sports bra that's also pretty. Or not.

What a different world it is for us all compared to 2 years ago!

Jane x

[Penny47]

I had some results back from my other bone scan- for the bone density.  There are two scans- one hip, one back; the first was normal, the second still osteopenic.  This is a big improvement on 2 years ago.  All that going out in the sun has done me good.  (What sun, you ask?  Spring starts tomorrow says the Weatherman!)  I feel inspired to top this if I can- anyone know any regimes for getting more bone strength in the lumber spine?

Good luck with the spine Sarah- remember that MRI's tend to exaggerate (like father in law at party)!

[Rara]

Well Sarah, I second that,,,, no news is good news!

Xx

[mills1]

Hi rachel, no results yet, i'm hoping no news is good news.

Thinking of Karen too x

take care x

[Rara]

Hi ladies, long time no chat!

Sarah, what was the result of your MRI?.

It's a year today since we lost our Karen.
Thinking of you all and hoping everyone is moving forward... That's probably what Karen would be hoping too!


Lots of love, Rachel x

[mills1]

Good to hear your scan was clear penny, thats one out the way, hope other test have good results too.

Marie have you had your result yet?

I had my MRI yesterday so waiting for results. hope you are all well, thinking of you all x

[Penny47]

I got my bone scan results yesterday.  All clear.  I had almost forgotten I was in the waiting room as I was offered a results appointment at the end of next month!  Now I'm hoping they will change the meds then.  My SEs are settling down but I have hardly done anything strenuous in the last month - now I'm over the Christmas Virus I am upping my activity levels.  On Monday I could just manage to walk down to the post box (just under half a mile) with a lift back.  Yesterday I walked over a kilometer up hill and down dale so I have a long way to go but at least I can breathe properly again.  And I can now sing about 8 notes; what more do I need?  In church I sing with the men cause I can't reach the high notes.  It gives me the giggles.  I now have my DEXA scan to test how far my osteopoenia has advanced and I'm really looking forward to that.  All this diet and exercise and not drinking alcohol (except at Christmas and birthdays and leaving dos!.) or caffeine- this better be good...

[nanniereeree]

I've just been to the drs as my big toes are numb down the outside he says it's my back. I've also got some more antibiotics for my ears and throat... He said my ears bulging lol that's not the only part of me that bulges lol xxx my bum my belly etc etc.

[Penny47]

Marie Thanks for asking it was actually quite fun.  Waiting around for 3 hours in a radioactive state doing paper work in the cafe while trying to avoid preggy mums and littl'uns.  The scan itself was easy.  I won't hear for ages.  Not really expecting anything conclusive so not stressing about it.  Saw the CS the day before and she's going to recommend they just change the tablets to exomethasane or whatever.  That's probably the quickest cheapest way to sort this.  Meanwhile I think I've had pharingitis too.  Wish my voice would be less like Marlene Dietrich and more like Audrey Hepburn.  Thinking of you in the waiting room too....xx

[nanniereeree]

Penny how did your bone scan go?

[Aly1971]

Happy New Year and a very belated Happy Christmas to you all - what a difference a year makes I've had a really lovely Christmas and off to friends this afternoon to see in the New Year, 2014 has certainly been much kinder to me than I expected and hoping that 2015 will continue in the same vain.

Wishing you all lots of love, health and happiness.

Aly xxxx

[Penny47]

Happy Christmas (6 days left of it!) to all Moonbeams!  And a Happy New Year!  I too am nursing a (school) virus but as it's quiet at work I can hack it. 

I have a bone scan on 8 January.  The instructions say you have an injection at 10:30 and then you are free to leave the hospital to return for the scan in 3 hours. Just don't go near anyone who's pregnant or under 4.  That shopping trip to M and S is off!  I'll have to take a good book.  Made me chuckle.

[Rara]

And a Happy Christmas from me to all of you too!,, xxx

[Dodo14]

Happy Christmas Moonbeams. x

[barbara2013]

A Very Happy Christmas to all Moonbeams! 

Hope all gets sorted for you soon Marie. Xxx

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@poemsgalore wrote:
Hi, I don't suppose it will be too long before there is a new chemo group for May. I'd just like to be the first to wish you all well with your treatment, and invite you to pop into the February Valentine's thread to see how we are getting on. It might give you a few tips of how to cope with whichever regimen you find yourselves on. Sending big hugs to whoever joins this thread. Good Luck.

Poemsgalore xxx

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[nanniereeree]

The consultant I saw deals with cancer not that they are saying I've got it but because of Breast cancer I got wrong because they didn't fast track me! Then she has put me on her list and two more drs for procedure.. Hope it's after Xmas one lol xx

[barbara2013]

Marie that sounds so painful - do hope it gets resolved soon.  Will you have to wait until after Christmas now ? Hope you get a chance to relax. Take care. X  Well done Sarah- moving on ! X

[Dodo14]

It finally beat me yesterday - at home exhausted - think I have flu.  Temperature 39.3.  Totally knackered!  I so nearly made a whole year back without any absence!  Daug off too with same thing.  Had 7 children in class off too this week.  Good luck Marie. x

[mills1]

Yes lets hope all is ok xx jo, the end of term is upon us and i must say i'm exhausted plus i have just caught a cough off of the little darlings. Had my last heart scan monday and all seems ok, plus had my port removed yesterday and a little sore today. regards to all, sarah xx