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May Moonbeams

Penny47
Member

Re: May Moonbeams

Aly you reminded me that when I was in hospital one of the nurses told me that it is common for BC patients after surgery to stop breathing properly- as if to ease the pain/discomfort. I keep having to remind myself to breathe even now! (although having asthma doesn't help).  Of course Yoga and Pilates are both great because your breathing is key to your movement.  Ribs can be stubborn things- I broke some once- hurt like h%*l for about a month and then the pain gradually went off.

Aly1971
Member

Re: May Moonbeams

Hi all, just popping in quickly to say I'm doing much better doctor thinks rib pain is 'musculoskeletal' and yoga should help - probably down to massive amount of tension in neck - I wonder why!!! Also I'm seeing a new Onc tonight as I've switched hospitals - so will post a longer one over the weekend. Thanks for your concerns I guess it's going to be like this for the foreseeable future and we just need to take on board all the support we can. Xxxx
Dodo14
Member

Re: May Moonbeams

Sarah

 

I have constant pain in operation site and noone seems at all worried.  I am dreading the mammogram, it will be agony.  It's funny how we are still all being handled so differently I think.

 

Haven't heard from Rachel or Aly since last post - hope they are both ok.

xx

mills1
Member

Re: May Moonbeams

Havn't seen Aly or Rachel on here for a while, i know they were going through different things. Are you OK ladies. Think Aly was having some pain investigated and think Rachel had been very down, anyone know?

I have an appointment back were it all started in the breast clinic to see about pain at operation site, god hope it's ok, feel i'm right back at the begining. Can't wait for the time when maybe i can go a day without thinking about this. Will that ever happen though? Barbara - Just speak to cancer nurse and tell her you don't want that consultant again and you won't have to, i was asked if i wanted to do that.

Take care and enjoy the sun (Safely) xxxx

barbara2013
Member

Re: May Moonbeams

Jo my BCN gave me my mammo result but she had rung about something else maybe 10 days or so after. Then got a letter in post. Hope all goes well.
Zuzy where are you off To? And Marie enjoy the last part of your holiday. We haven't got any big holiday plans yet.
Dodo14
Member

Re: May Moonbeams

I have my mammogram next Tuesday but am not seeing CS until 17th July - how long did you all have to wait for your results?

Penny47
Member

Re: May Moonbeams

Suzanne I get followups from ONC once a year for 5 years( and I'm not on Herceptin, only hormone tablets).  Except being in the trials I go on for 10 years.  The doctor who saw me most of the time (not the one with the horns) has gone on maternity leave so I doubt I'll see her next March but you never know.  I get to see the CS after my mammogram.  So that means I see them 3 months apart which is not ideal...I'd rather it was 6 months.  But I'm sure if I have symptoms the BCN will get me an appointment.

 

Having a lovely run of sleepy days.  Hope it's the weather.  Off to my roost now!

Dodo14
Member

Re: May Moonbeams

Sorry to hear about your disappointing onc appointment Barbara - must be something in the water...

 

Zuzy,  I am on Herceptin and have a heart scan and blood test every 3 months as routine.  After these have been done I have to see the onc before I can continue treatment.  After I have finished the treatment (4 to go) I will probably not see him any more, like you.

 

Zuzy
Member

Re: May Moonbeams

It's interesting that you're all still seeing onc, I last saw mine a month after rads and that's it, is it because you're all on Herceptin?
Anyway hope you're all enjoying the sun, I'm off on hols in a couple of days 'see you' in July xx
barbara2013
Member

Re: May Moonbeams

Hello all

Had a similar experience to Sarah last week ie a less than inspiring appointment with an oncologist who didn't seem at all informed. Fortunately my GP had already told me my latest scan still showed pneumonitis not cancer but he didn't seem to know anything about it. I hate to think what it would have been like if there had been bad news. I had no confidence in him so didn't follow up on some questions. Do you think we should do anything about these unsatisfactory consultations ? I have, of course, had some great care from the nhs too, but I know i don't want to see this one Again? My next check up now is a mammogram next Feb!
Dodo14
Member

Re: May Moonbeams

Ok - I said Ihope you are having a good time in France.  Goodbye for now...

nanniereeree
Member

Re: May Moonbeams

Yes well I don't speak French lol.
glad your ok Sarah
Speak when I get home xx
mills1
Member

Re: May Moonbeams

Hi Marie, glad your having a nice time.

I have bought and old mini to go around in. It needs some work, it's very cute and will be fun when finished.

Still trying to finish this degree and working, can't wait for the end of term, six weeks away.

Take Care x

Dodo14
Member

Re: May Moonbeams

Bonjour Marie,

 

J'espère que tu passes du bon temps en France.  Au revoir maintenant.  Jo x

nanniereeree
Member

Re: May Moonbeams

Bonjour ladies from sunny Bayeux. Now on my last week of three having a lovely time mobility scooter has been used lol.
Hope everyone is muddling through xxxx
Penny47
Member

Re: May Moonbeams

This is so true Sarah.  I just saw my CS for a routine check (roughly 6 months since my sermoas cleared up) and it was surprisingly painful for a routine "normal" check. She put her finger precisely on the last tender area.  Nothing to worry about apparently.  My eyes were full of tears but I was relieved.  Meanwhile according to her it is apparently nothing to worry about if you can't get both elbows to the floor when you try a shoulder bridge with arms up and "over" your head.  That's the one wierd thing I am left with apart from the odd appearance and the rash.  Oh, the rash! It  gets worse when I've been gardening and I blame the nettle sap in my bloodstream when I am weeding. I do wear gloves but they have holes in them.... I just keep slathering on the creams. 

 

I am still needing a siesta one or two days a week.  I don't know how you full-time workers manage it.  I am working about 25 hours a week mostly at my own (slow) pace.  But I still have to nap after an evening meeting the night before (like last night). Luckily my old skill of falling asleep anywhere (learned when I was doing night shifts) has started kicking back in again.  I even managed to sleep with a restless cat pacing up and down the sun lounger while I napped!

mills1
Member

Re: May Moonbeams

Hi all, our circumstances ar so similiar at the moment. I have also been to docs after 2 weeks of breast pain, he examined me which was so painful. last scan month and a half ago ok and bloods ok. being reffered back ONC so see what he says. Have a feeling he will say all ok which is great of course but i don't trust that they miss something I just want to know exactly what is causing pain. Take care all x

Dodo14
Member

Re: May Moonbeams

I saw onc yesterday - let him know about my worries about recurrence.  He checked my latest blood results and my neck area??  but not my actual breast.  Said he wasn't worried by anything I said and that my bloods were all fine so he didn't see the point in a scan.  I asked him if he would examine me but he said he didn't think it was necessary.  Feeling a bit fobbed off and not greatly reassured. Smiley Sad

barbara2013
Member

Re: May Moonbeams

Thanks Aly. Sorry to hear of your anxiety. I find it hard to trust anything to do with my body- even 'good news' I find difficult to have complete faith in. A lot of the time I am pretty positive, however. I also think tamoxifen has an effect on mood- makes me irritable a lot of the time and affects sleep- could that be contributing? I am seeing Onc on Friday.
Love to you and to Rachel Penny and Sarah who all seem to be suffering a bit at the moment.
Lucy_BCC
Member

Re: May Moonbeams

Hi Aly

I wondered if you knew about the BCC 'moving forward' services and information which may be of some help to you at the moment, here's a link to the pages:

http://www.breastcancercare.org.uk/moving-forward

Take care
Lucy BCC

Aly1971
Member

Re: May Moonbeams

Oh and fantastic news on scan Barbara xxxx
Aly1971
Member

Re: May Moonbeams

Well done Jo for signing up - brilliant to have something to train for and focus on.

Sorry to hear that a lot of you are having a bad patch. It is such a journey of ups and downs isn't it?

After a lovely positive lunch with Zuzy last week I've also hit a low again. I think it's just everything catching up on me - the moonwalk, 1/2 term and back to back hectic weekends. My weird rib / chest pain has returned and of course I've convinced myself it's something bad. I'm giving it one more week and have made an appt to see my 'favourite' doctor at local surgery where I know I'll get an honest & understanding answer. I've no cough, and no breathing pain, and my bone scan was clear, but it just doesn't feel right. I wonder if it's still the body recovering?

I'm also still really struggling with the fear of secondaries / recurrence I just can't seem to shift it and think I might need to look into counselling. Every ache and pain feels like a reminder of what has happened and strikes fear into me.

Sorry for such a negative post but thought I'd share with others struggling that you're not alone.

xxxx
Penny47
Member

Re: May Moonbeams

Wow Jo for taking on a challenge- how long is it?  KM or miles I mean not hours LOL.

 

Seeing CS on Wednesday for first time since op; she was on sick leave for some weeks and I saw a colleague at 6 weeks for my seroma. Like you Jo I still have itching in the Rad area which seems to be getting bigger!  But the biggest pain is not being able to get my elbow to the floor when I put  my arms over my head in the shoulder bridge in Pilates.  Obviously something has tightened up which ought to be loose and I can't work out what it is.

 

I have been taking amitriptilline off and on for the tummy problem- helps me sleep sounder and wake later.  Not sure if has had an effect on my mood which is often weepy and desperate.  But I can usually claw my way out of it. 

Dodo14
Member

Re: May Moonbeams

Hi all,

 

My daug and I have just signed up for the Stevenage 5km Race for Life on 13th July.  Probably will be walking rather than running at the moment but good to be doing something positive.

 

barbara2013
Member

Re: May Moonbeams

Hi moonbeams
Good to see your posts and sorry to hear of struggles, inevitable I think. It is, as my mum used to say, two steps forward, one step back. And sometimes feels the other way round.
I have also been away for a few days, doing some walking, well hobbling actually, in the rain. Managed to damage toe and had to see GP. Got scan report. Good news, no cancer on lung or liver ! Shadow on lung remains, but 'partially' reduced so doc thought would need further treatment. See onc next week.
At last a sunny morning here, out early for breakfast by the beach.
let's hope for a balmy June.
mills1
Member

Re: May Moonbeams

I feel exactly the same !!!! RE my last post.  i also have had a loy of pain recently and scar tissue feels lumpy/swollen. Doc says scans from a month and a half ago are clear and to come back if anything changes and that it may hurt because i have been prodding it!  NO, i felt it because it hurt and it has already 'changed'.Onc make me feel worse! Will try to see my GP. I am now on iron and folic acid tablets along with the 3 high blood pressure pills. anti acid, tamoxifen and now ibuprofen.GGGRRRRRRR.

Anyway im sure i will get sorted. Lovely to hear from you rachel sorry your feeling low but hoped you enjoyed devon. Love to all xx

Dodo14
Member

Re: May Moonbeams

Rachel glad you are ok but sad to hear that you are also struggling to move on.  It really is an ongoing mental battle with yourself isn't it?  One minute I am enjoying life, the next I am in tears.  I wonder if this gets easier as time passes or if it will always be there?

Rara
Member

Re: May Moonbeams

Hello! How bizarre, I posted here on Monday night when I got home from Devon!
I put something like how we are all moving forward but obviously we all have worries of recurrence . I have been put on anti depressants .
So looking forward to meeting everyone in September .
Hope your break was good Jo.
X
Dodo14
Member

Re: May Moonbeams

Hi all, it really is very quiet on here and haven't heard from Rachel for ages - hope she is ok.  I have been away in Cornwall for the half term and had a journey from hell home today. Seeing onc on Monday for latest heart scan results to check am ok for last few Herceptin treatments -no 14/18 this Thursday all being well.  Still have a lot of pain, itching and discomfort in breast area and although they have told me not to worry I still keep worrying that it is back.  A couple of times I have convinced myself I have found a lump and got very worked up but then I lose it (the lump) and can't find anything so haven't done anything but still at the back of my mind.  My OH says it is probably  normal to feel like this and I have mammogram in June anyway but I can't stop the constant low level anxiety at the moment worrying that my life is about to be turned upside down again.  Is this normal or should I be talking to someone about my worries?  I want to move on but something is stopping me from doing so completely....

Penny47
Member

Re: May Moonbeams

Sept 14 is fine for me.

 

Serious stamina issues for me but at least I know they are related to my work and other outputs of energy not just anastrazole-related.  Jo- I found that herbal senna tea and it worked but GP has said I'm better to stick with Movicol as you can become dependent on stuff which speeds up your digestion whereas Movicol only works osmotically.  Whatever that means.  Also I am allowed to have regular holidays from taking calcium.  This is a good week for that but that's partly due to running after grandchildren.  At work I get my exercise by running around in the rain putting up posters and running across the churchyard to the Loo. 

 

By the way part of my job is arranging funerals from the church end and my first proper funeral (as opposed to memorial service or cremation ) is tomorrow- a BC sufferer who I used to know when our kids were little. Sad.  I can see I will get used to this in time but meanwhile I need to take the time to breathe deeply and pray when I get the news of each death-I seem to know a lot of people.  Luckily we have some weddings and christenings to look forward to as well.  (very popular church for weddings.)

 

 

Zuzy
Member

Re: May Moonbeams

We're not on FB either, I think we're all just too busy getting on with life!! I had lunch with Aly today which was lovely, we were talking about the 14 Sept, def need to get it sorted and in the diaries. Have a good weekend everyone xx
nanniereeree
Member

Re: May Moonbeams

Sarah you longer why didn't you text me .... I will not be about for the next three weeks as we are off to France in the morning..
JaneyW
Member

Re: May Moonbeams

Oh yes, won't it be lovely to be back to ME!! Everyone said it'd take a year from the end of chemo before we'd feel anything like normal again, and to some extent I think that's right, but I know I'm nothing like the same as I was 13/14 months ago. We adjust to our new 'normal' I suppose, but I know it's a different one. Like many of you I'm on the Anastrozole, calcium, and bisphosphonates, and like a few also Herceptin (land in sight for the end of that). I know I'm lucky to have been diagnosed so early and treated so well and so thoroughly, but I do miss the care-free-ness of the old Jane. No treatment, taking health so much for granted.

 

Have we settled on September 14th for our get together? Should we fix venue and numbers?

 

Hugs to you all, you made this all so much easier than it would have been alone.

Jane x

mills1
Member

Re: May Moonbeams

Hello moonbeams, must say it's very quiet on here, i expect your all on FB and all getting on with our lives. Been off work for 2 weeks, exhausted and had heart palpatations. I have been told it's anxiety. Felt like a week long panic attack but feel better this week after breaking down at onc visit and getting reffered to a councillor. Maybe should have done this a while ago. I'm in such a hurry to be ME. I hope you are all well. Anyone going anywhere nice in the summer? Need ideas I can't choose lol. Take care all x x

barbara2013
Member

Re: May Moonbeams

Jo and Sarah- i too get very tired. Came home from work early and lying in bed at the moment which I often need to do and I am not full time! It is at least reassuring that you feel the same because perhaps it is to be expected. I think I must have run on adrenalin when we went to Japan! Have ct scan next week - hope to forget about it all to go away with friends at Whitsun and then Onc and results. Hope the promised good weather stays around so we can enjoy walking in Wiltshire Berkshire countryside.
How are those on tamoxifen doing? My hot flushes seem less dramatic but more frequent sweaty/clammy my episodes. Lovely!
Dodo14
Member

Re: May Moonbeams

My school trip Penny.  Yes at least the sun will shine but it will be a very tiring day.  Fed up today, left home at 10am for my 11am Herceptin appointment.  Finally got in at 1.30pm and left an hour later.  Had no lunch and lost nearly my whole planning day!!!  Kitchen still in disarray and noone wants to deal with the problems - too stressful...

Penny47
Member

Re: May Moonbeams

Jo- your school trip?  Or daughter's??Oh well the weather's supposed to be pretty good then as long as it's not in the north.

 

Just had three hours gardening in the sun.  Brilliant.  Almost made up for a not so great Pilates session.  One week off with a knackered foot and I'm back to square one.  But I have enough energy most of the time and the new job is going well.  Apart from having to take details of a funeral of a lady I used to know.  But I knew I would have to do this sort of thing when I took the job. 

 

The Herceptin sounds like a little souvenir of a terrible year.  Maybe not so little. 

 

Dodo14
Member

Re: May Moonbeams

Sarah

 

Yes I am also stillhaving Herceptin - number 13 tomorrow!  I think Jane is on Herceptin too.

 

I feel really tired today, exhausted in fact.  Think the pressure of the SATs is getting to me!  (Daughter's not mine...) Plus school trip on Friday - aagh!!!

 

How is everyone else?  xx

mills1
Member

Re: May Moonbeams

Aly- That's fantastic well done you

namaste- i think it's me and jo(?) that are still having treatment, we are having herceptin and think some of us are on tamoxifen too. I certainly don't feel back to normal yet, back at work but had to have this week off, i am exhausted!  I too feel impatient but but we have all been through so much lets be kind to ourselves. I have been busy with my degree lately, had to get an extention but i'm getting there slowly.

Nice to hear from you all, see you in september xx

nanniereeree
Member

Re: May Moonbeams

Well done Ally xxxx
Penny47
Member

Re: May Moonbeams

Aly you done good.  Wow! 

Dodo14
Member

Re: May Moonbeams

Hats off to you Aly - what an inspiration!  You are amazing. x

Aly1971
Member

Re: May Moonbeams

So I did it!! 26.2 miles in 8.5 hours - we got over the start line at 11:45pm and finished at 8:15am this morning.

 

I'm not going to lie it was really tough - especially around the mile 13 mark at 4am in the morning with the thought of another 4-5 hours of walking ahead of us. We all had a slight sense of humour failure but this was the point when I thought of Karen and you lovely ladies and 'dug in'.

 

Feels amazing to have done it and me and my team of 'Aly's Angels' have raised a phenominal amount of money - nearly £7000 to date with a few more sponsors still to come in.

 

Its a brilliant experience and I would highly recommend it - even if you only do the 1/2 rather than the full it's still a real challenge because of the sleep deprivation. The training has given me a massive fitness boost but more than anything I've been blown away by the sponsorship and well wishes - its very life affirming.

 

My OH has just cooked a lovely roast chicken and I'm now putting my feet up with a large glass of red wine!!!!

 

So next week I'll get cracking with arranging the moonbeam meet up for the 13th/14h September.

 

Love to you all.

 

Aly xxxx

JaneyW
Member

Re: May Moonbeams

So, Aly, how did it go? Tell us all please!

Rara
Member

Re: May Moonbeams

Lovely to hear everyone's news, including daft doctors ! and so looking forward to meeting in September. I would be up for staying the night on the Saturday.
Yes these first anniversaries are hard for all of us. Such horrid memories of fec and tax and hair loss etc. but look how far we have all come and how well we have done. Karen would be so happy for us all.
Namaste, you are amazing, so much chemo, ugh! Nice to hear from you, please keep in touch.
Have a lovely Sunday and well done Aly on your fundraising walk
Love and many thanks for your support over this last year.
Rachel xxxx
barbara2013
Member

Re: May Moonbeams

Aly - have a fantastic night tonight doing the moonwalk- I would love to do this - maybe next year.
Namaste really good to hear from you, heading out into the open after such a long stint with treatment- emerging is not simple- none of it is- but keep looking forward and well done.
May is full of memories. This time last year I was so apprehensive about facing the world with newly shorn head ( got well brazen to that). I remember it all felt so uncharted.
Waiting for ct scan again re cough but think I have noticed an improvement recently. Still get tired and achey though and never sure what to make of it. But mostly charged up with a sharpened desire to enjoy it all whatever.
Hope all moonbeams enjoying this May. Xx
Penny47
Member

Re: May Moonbeams

Good to hear from you Namaste.  I thought I was the slowest to finish but you have taken the honour!  When I was at the 9 week after RT mark I was still fighting exhaustion and I was further away from Chemo then you.  So don't whatever you do NOT despair.  As my GP likes to remind me, you have had 15 doses of POISON (I only had 6!  And only 3 were TAX).  So go steady there.  Part-time study sounds like just the thing.  Keeps those little grey cells working and not too taxing but a good distraction.

 

I still get those shooting pains in the soles of my feet (unsually only one at a time) so I am so grateful my new job is mornings only.  And my sense of taste and smell deserts me without warning, usually when I have to shop and cook for the family!  But apart from that life is good and it I feel better about looking in the mirror.  Good luck.

 

 

Zuzy
Member

Re: May Moonbeams

Good luck Aly, will be thinking about you (until I fall asleep!!!)

Hi Namaste, glad you popped back ii

I think it's taken us all a while to move on but think we're all starting to get there now, all be it a different us to what we were before. Although given a choice none of us would go through this I'm v grateful that I met you all.

Sxxxxx

Aly1971
Member

Re: May Moonbeams

Hello ladies - I've been popping by too but only post everynow and again I guess its a sign that we're all getting on with our lives which is a positive but lets not lose touch - I bet also there's a few people starting chemo this month who might pop in to see what life feels like a year on??

 

Namaste really good to hear from you and as you can tell we've all been having our ups and downs, I'm not surprised you feel like you arent recovered yet its really early days and you've been through a hell of a lot of treatment - keep popping by we're always here.

 

So its a big day for me today - I'm doing The Moonwalk in London tonight - very apprehensive about it but also excited as I think it will be an amazing event - I'll pop back on in the next couple of days when I've recovered and let you all know how it went.

 

Happy anniversary Moonbeams!

 

Aly xx

nanniereeree
Member

Re: May Moonbeams

Hi ladies I pop by every day and I thought it was quiet too. Welcome back Namaste nice to hear from you. It takes time to get back to normality.
Marie x