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May Moonbeams

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Dodo14
Member

Re: May Moonbeams

Back in the waiting room again following my annual mammogram which picked up calcification in the other breast.  Had a stereotactic biopsy yesterday.  They say it is probably harmless but that they need to make sure.  Seeing consultant Monday week for the results.

 

Hopethings are better for the rest of you. 

Penny47
Member

Re: May Moonbeams

Well I did have to have radiotherapy after all.  And it's different in 25 degree heat when you still have a breast to zap.  So I am chilling indoors today.  They let me out at sunset. 

 

My WLE happened on 1 March after a month of trying to get over the lurgy (I got over it ok) and my recovery was very quick.  No chemo thank goodness.  No side effets with the RT either except itching from day 2 and an unrelated heat rash. So-another week of this and then a week  of rest and I should be good to go.  On holiday.

 

namaste
Member

Re: May Moonbeams

Goodness me Penny, you really have been on the merry go round! Glad you're feeling okay and things have worked out.

 

I'm waiting for my mammogram again. It's been delayed a little as we've made the permanent move to Scotland 🙂 It's very exciting even though I know no one except my husband. 

 

Hope everyone else is ok. There's a certain security in just 'getting on' with the ordinary, was all we wanted not so long ago x

Dodo14
Member

Re: May Moonbeams

4 years and counting my lovely moonbeams!  Hope you are all well. xx

Rara
Member

Re: May Moonbeams

How did I miss these last posts!? 

Glad everything worked out ok Dodo.

penny, praying this treatment plan works for you.

damn cancer

 

xx

Penny47
Member

Re: May Moonbeams

Feeling delirious....I've got a dx which is Adenoidal Cystic Carcinoma which is really rare- it's tiny and in situ so they will take it out leaving the breast almost unchanged in appearance (apart from the scar.)- A WLE with a week off work and probably no follow up treatment. Chemo doesn't work and radiotherapy- well, the ONC doesn't want to know. I have my op on 17 Feb, pending successful outcome of heart tests. As the Surgeon said- if you had to have a cancer in the other breast, this was the one to pick! Now I've got to get my strength back. Having a beer tonight to celebrate.

Penny47
Member

Re: May Moonbeams

In the waiting room for the second time in 3 months only this time I haven't had a reassuring phone call that the biopsy was negative.  Seeing the surgeon and BCN tomorrow and expecting a set of options for treatment.  It finally hit me this evening when I was making dinner and I had to sit down and have a drink (in this case ginger ale!) - at least I only have a few hours before I know what is in store for me.  I spend so much time at the hospital with my husband I'm sure I will adjust to treatment again!  But apart from this and having pneumonia after Christmas life is good! 

Dodo14
Member

Re: May Moonbeams

Back in the waiting room again - does it never end?  My back is still sporadicaly playing up and so I have been sent for another xray of lower back/pelvis area.  Fed up!

Penny47
Member

Re: May Moonbeams

It was good to hear from you Namaste.

 

I am having a little holiday from the Anastrozole.  I went to see the surgeon last month - a new one brought in to clear up a backlog of annual appointments for NED people.  She was very understanding and she said talk to the GP.  So I did and and he said- let's take you off for a bit, see if it makes a difference not having the side effects (as if!) and then you can have the Arimidex (that's the patented drug I was put on by the hospital which I had no S/E's on).  That was Monday.  On Tuesday I happened to have my annual checkup with the cardiologist and he was very concerned about my side effects- the muscle pains can also be caused by heart meds so he was right to be concerned....but I am picking up that my surgeon must have written a strong letter to the GP which the careful cardi picked up on as he had clearly studied my notes- makes a nice change when that happens!  The upshot is that despite the heat I haven't had to nap during the day and I have bags of energy for the stuff I choose to do not just work and the housework.  And in my medicine box I have a small box of Arimidex which is worth £1903!!!  I'm rich!  I start taking them Monday. 

 

My cardi also took me off statins cos I have had bad leg cramps which is an s/e and I start again on a half dose in about 10 days so I really do feel as if school's out for the summer.  Which it is.  This respite just in time for a little grannying.  Which reminds me- how are you getting on Marie? 

 

PS the cardi confirmed that the MRI scan shows damage "consistent with chemotherapy damage" .  The oncologist keeps bleating about "not having had a strong enough dose"  but I've looked through my diary and the only times they told me they reduced my dose was FEC2 and TAX3, both times after neutropenia.  As far as I can tell the rest of the time I was on the full thing.  I wish I had asked for a copy of the letters from the consultants to the GP- all I've got is the one from the breast surgeon after the op. 

 

namaste
Member

Re: May Moonbeams

Hello Ladies Smiley Very Happy It's amazing how time flies in some ways yet in others drags soooo slowly! 

 

Sorry to hear your news Penny, there's always something it seems.

 

I'm still in Scotland, awaiting the results of my first mammogram since last years recurrence, worrying times. I'm trying to keep busy and positive, that's what led me back here, wanted to see how you all are. 

 

Glad everyone's managing well despite our ups and downs. Take care all xxx

Aly1971
Member

Re: May Moonbeams

Ooh we can add hugs - when did that happen?? Shows how long it is since I've bee here 😊
Aly1971
Member

Re: May Moonbeams

Hello everyone, just catching up on everyone's news, hard to believe we were all in the midst of it 3 years ago. Seems like another life sometimes and yet still so raw. Someone at work bought some elderflower and ginger cordial into work and I couldn't even look at the bottle it made me feel so sick. Jo great news that the results have come back clear must have been quite a scare. Penny I hope your OH is doing ok. I'm doing well (with a large touching of wood) I've returned back to work 4 days a week (maternity cover) and have to say I am loving it. I'm very tired by the end of the week but feel so much more like me, and enjoying being useful to someone other than my kids / the school. I also took on the role of moderator for the YBCN FB page a few of us are members of. I've found this so rewarding, I was worried it would impact on me 'moving on' but in a funny way it's helped. Anyway I just wanted to let you all know you're never far from my thoughts and send you all lots of love xxxx
Dodo14
Member

Re: May Moonbeams

Hooray!  They are cysts, now I can sleep again. Xx

Spoiler
 
Dodo14
Member

Re: May Moonbeams

Hi again,

 

Had results of mammogram today, earlier than expected.  Although they said the results were benign they have also said there are two cysts which were not there before and so I need an ultrasound to be absolutely sure all is ok.  The consultant was very confident that there wasn't anything to worry about but then why an ultrasound?  Feeling very low - back in the waiting room again!  When will it stop?

Dodo14
Member

Re: May Moonbeams

Have either of you heard from anyone else?  It would be nice to hear their news.

Rara
Member

Re: May Moonbeams

Hi ladies,

 

good ode to hear from you both, esp Jo who I haven't spoken to in ages! 

 

Yes, it's tiring this working hard thing! And I agree about certain months being worse than others in terms of worry.

 

hope we can catch up in the summer holidays instead? 

 

 

Enjoy joy the bank holiday weekend

 

xx

Penny47
Member

Re: May Moonbeams

So good to hear from you Jo - your job sounds so interesting.  I can just about work 5 hours a day now which I guess is progress! Onwards!  Upwards!

 

 

Dodo14
Member

Re: May Moonbeams

Hi everyone,

 

Long time no speak.  I am good thanks - looking forward to my annual mammogram on Tuesday followed by the results in late June.  I find March to June the most difficult months for staying positive - don't know about anyone else?

 

I am very busy at work.  I have been moved to years 5 and 6 this year and have just taken on acting SENCo duties for a year too.  I am constantly tired but enjoying being useful again.

 

Unfortunately, I am report writing through most of half term so cannot really meet up but send my love to you all and hope you are all ok. 

 

Jo

xx

Penny47
Member

Re: May Moonbeams

Here I am!  I would love to but we have to go to a cocktail party at the Oncology Clinic bang in the middle of half term which knocks the whole thing out.  Hoping you all get together though!

Rara
Member

Re: May Moonbeams

Well ladies! Long time no speak. This obviously means we are all getting on with our lives. 

 

Anyway, I don't need to remind you all that we all started chemo three years ago this month. Look how far we have come! 

 

I would love love to see you all some time this year.... We said we would go up towards Marie and Sarah's locality. Anyone free over half term? 

 

 

Love  to you all

 

rachel xxx

 

Penny47
Member

Re: May Moonbeams

Feeling positive.  OH had his onc appt today and the consultant felt his glands and they have shrunk to nothing after only 2 months on Dabrafenib.  Not dreading the next CT scan as much as I did the last couple.  I've shed another of my jobs but very busy anyhow, but in a planned, restrained way.  I have 5 heart meds plus the anastrazole.  I am so glad I learned about shopping around different drug manufacturers as I have found a combination of tablets which don't completely knock me out.  Hoping you are all enjoying this warmer weather.(?)

Penny47
Member

Re: May Moonbeams

Just to say that I have seen the cardiologist who is 90% sure my heart problem is due to the chemo.  With the new meds my strength and stamina have grown and I am now in a cardio rehab course and feeling great.  My husband's cancer has advanced and he has secondaries on his lymph glands and he will have treatment- probably immunological (but it is the same drill as the chemo ie hours of waiting, step up to the bar for an infusion, then sick days and two reasonable weeks before the next medical cosh.  Only this one will probably not just be for 6 months.  We don't know yet.) The waiting with someone is worse than the waiting for results for oneself.  Over on the Melanomates facebook page they call it "scanxiety".  The good news is that he is fine in himself and if he hadn't had all these tests we wouldn't know he was ill.  Hoping you are all coping and enjoying this lovely early spring weather we've been having 😉

 

Penny47
Member

Re: May Moonbeams

Same hospitals?  Or have you got to cover the countryside again?

 

nanniereeree
Member

Re: May Moonbeams

Well it's that time of the year again got my appointment for mammogram on the 1st Feb early this year it was in April last year... 

nanniereeree
Member

Re: May Moonbeams

Ignore the previous comment dont know what happened there,,,

 

 

Well hello ladies Happy New Year to you all and I hope you had a very good christmas..

i have a date for my MRI its on Saturday the 23rd of Jan at 8.15 yes 8.15 on a saturday morning. Jeepers means I have to get up at 6 in the morning...

The hope is that it is a bulging disc causing all the pain if so it will be a bloody relief to find out what it is as I am sooooo fed up of taking pain killers just to get through the day, and also would like to get back to as near normal life as is possible.. but hey ho there are people worse off than myself but sometimes it dosen't feel like it,

Marie 

nanniereeree
Member

Re: May Moonbeams

 

Spoiler
Spoiler
 

 

Penny47
Member

Re: May Moonbeams

As a postscript to the last post, just to say that the ONC told me that I didn't have enough of a dose of Epirubicin to cause heart problems.  So my chemo could not have caused my problems.  Feeling baffled.

Penny47
Member

Re: May Moonbeams

Aye, Ready in the sense that I know OH won't have his second op between now and then.  But he might have a scan.  Keeping very calm about it and just trying to get things out of the way so I can enjoy it when it happens.  Christmas I mean. 

 

I'm having a good spell with the meds and getting some stamina back though it's a long haul. I;'ve been told I can have cardio rehab even though I don't strictly speaking qualify as I haven't had a heart attack.  The person who teaches it has given me more tips in the five minutes I spent on the phone to her than the whole set of doctors I/ve been seeing.

 

Marie how are you?  And the rest?  I have a gig at the hospital with the ONC tomorrow.  Routine but I will discuss my future tratment now I'm a heart patient.

 

 

nanniereeree
Member

Re: May Moonbeams

Just thought I would pop on to make sure everyone is ok and ready for Christmas?

Penny47
Member

Re: May Moonbeams

I've met some fellow cardio sufferers on a different thread and there is lots of hope in the offing.  Really relieved and looking forward to talking to my BCN about how to get the ONC and the Cardi talking.

Penny47
Member

Re: May Moonbeams

Jo-don't be shy about asking for an ECG-most surgeries have them now and that will set your mind at rest if it's normal.  As for me it is impossible to disentangle to tiredness from the hormone therapy to the tiredness from the heart thing. 

 

I will be seeing my GP next week for an interpretation of what the specialist said after I had my angiogramme- you should always write thiese things down but my arm was out of action because of the procedure!  So I was trussed up like a turkey.  Felt stupid.  i am on 6 lots of tablets now- no side effects so far,  No effects, either.  😉

 

Rachel I am so glad to hear about your brother.  It must have been a worrying time for your parents!

Dodo14
Member

Re: May Moonbeams

Hi Rachel,

 

So glad to hear your brother is improving.  Great news.

 

I am going to see how I feel this week after more sleep and less stress.  I already feel better so I think I am just worn out. Thanks fr your advice.

 

Jo

xx

Rara
Member

Re: May Moonbeams

Hi moonbeams.

 

I Think you should ask for a blood test Jo. Also get your blood pressure checked. You are correct when you say cancer made us paranoid..... And for some it really has been awful , eg Penny getting cardiomyopathy. 

I hope you get plenty of rest during half term Jo.

 

how long is your hair now? Is it shoulder length yet!? 

 

Love to all

 

 

rachel xx

 

ps my brother is doing very well. Much improved. Walking and talking! 

Dodo14
Member

Re: May Moonbeams

I have felt generally unwell for a couple of weeks.  I am very tired and sometimes feel it is hard to breath although I am not gasping for breath at all.  I also have a blocked up sensation though and a sore throat and am at the end of a very long and stressful half term so it could just be that I need a good rest!  Cancer makes you paranoid though don't you think?

Hope everyone else is well and moving on positively. x

Penny47
Member

Re: May Moonbeams

Just got breathless when walking up hill to start with.  Then noticed wierd extra heartbeats. Then I went swimming and found myself struggling to do a full lap- normally I'd be up for 8-10 straight up.  I've been taking my blood pressure at home since it started going up before my diagnosis - about 4 years, and it didn't seem that bad but every time the GP takes it it's up in the penalty area, but not too bad.  I asked for an ECG after having stepped up treatment for asthma for 2 months.  That showed there was an abnormality and this was confirmed by echocardiogram, 24 hour ECG and angiogram (which is where they x-ray your heart to establish how clogged up your arteries are or if there is any valve damage.  Mine is OK)  It took only 2 months but I did pay privately for the echo as the waiting list is 4 months long.  So now they are taking the high BP seriously and I have tablets for that, for the heart, and aspirin (75ml daily) to thin the blood- 5 in all.  I am thankful that we seem to have caught the condition early.  Really wishing we had cardiac nurses to go to like BC nurses- people who belong to the team and can explain stuff to you.  I have just realized that when my class studied the heart in science at school I had an extended christmas holiday because of 3 feet of snow (this was back in the 1960's) and I never quite caught up with it and missed the dissection!  So I have a little more learning than most people to catch up with!

 

I have read somewhere that it should be routine for chemo patients to have ECG followup.  The ECG and ECHO before the treatment were dead normal so that's how they come to think chemo caused the problem.  Hoping you don't have the symptoms but if you do hoping you'll get prompt diagnosis and treatment! 

 

Dodo14
Member

Re: May Moonbeams

Hi Penny,

 

Sorry it seems that you have really been through the mill lately but at leats the news is relatively good.  Could I just ask what the symptoms of your heart condition were?  Jo x

Penny47
Member

Re: May Moonbeams

Just to say the tests are over and the diagnosis is cardopmyopathy almost certainly caused by the chemo.  I am the one in ten who gets this SE but it is treatable. Going back I would have made the same decision to have chemo as it made such a difference to my cancer. 

Penny47
Member

Re: May Moonbeams

We have had 7 hospital or GP appointments in 8 days, but the good news is my OH's melanoma has only spead to his lymph glands so he is down for a Axillary Clearance and re-excision very soon.  5 weeks from diagnosis to treatment plan.  It seems an awfully long time.  It has (I'm afraid) made a difference that someone has woken up and realized he is still working at 78.  I do so miss something as brilliant as this forum for his cancer!  Other forums are available I know but I miss the support we all got here.  Maybe it's me- I've been round the park once already and my expectations are so high.

 

As for me, when I am not driving him to appointments I am off work draped around a hot water bottle with an attack of diverticulitis which seems to be a reaction to the blood pressure meds- useless, as the pain has pushed my blood pressure up.

 

Off to the hospital now for another gig and then I'll look out my old heart cushion and drainage bag carrier as he is going to need them.

Penny47
Member

Re: May Moonbeams

Sorry Rachel- your brother is too young for a stroke!  As if you didn't know!  Thinking of you both.  If he has inherited the same strength as his sister, he will be very blessed in his recovery!

Rara
Member

Re: May Moonbeams

Thinking of you and your OH at this horrible time for you both.

 

meanwhile, Namaste, great news!,, enjoy Bonny Scotland

 

my brother twin, had a stroke. Ridiculously fit and healthy normally. Sod's law.

 

he is expected to recover

 

xx

Penny47
Member

Re: May Moonbeams

Just had the news that my husband's "normal" mole is stage 4 melanoma.  Still reeling from the shock.  Melanoma I now find out is a whole lot less common than BC - and the treatment and the funding for it is a whole lot different as well.  For example, sentinel node biopsies are not funded in our area.  But if you need one you are likely to be in a "trial" somewhere far away (like Bristol or Oxford) where they do have funding for that.  We will know more on Thurs after the MDT. (they do have those the same as BC only different Oncologists.).  Looking on the good side:  glad we are postponing our foreign holiday.  Also: because of this he has agreed to apply for a blue badge, something he needs more and more as his hip condition gets worse and worse.  Now this has all happened my heart problem seems just a detail. 

Penny47
Member

Re: May Moonbeams

I've had a rant on facebook about this but just to let the rest of us know that-after 6 months of feeling breathless on exertion, I have had an ECG and they have found a heart abnormality they have not found before.  I had had heart scans the very day I began my first cycle in May 2013, and I was in such a state I don't remember very much about them. (so if I did have an abnormality then you would think they would have picked it up then!)  We probably won't know if it was caused by the chemo or not for ages, if at all- they don't have the targets in Cardiology over diagnosis we did in BC care.  If we have a diagnosis by Christmas it will be a miracle. 

 

We were going to the USA in Sept for a holiday and we've postponed it til the spring.  But the good news is I got my health insurance payment back this morning, every penny, because it was just inside the two weeks cooliing off period!  So now we are thinking of visiting my daughter in Paris where she's living now.  In the meantime I'll be doing lots of gentle walks on the level, trying to keep up my fitness while I can!  Every day I am feeling more and more positive about it.  Like Namaste, I'm re-evaluatiing my commitments; how did I wind up like this with three part-time jobs?  I'm going to take a rest now as I'll be working all day tomorrow.

 

Keep safe and strong you Moonbeams!

Penny47
Member

Re: May Moonbeams

Namaste... that sounds so ideal-Scotland sounds like an amazing place for education.  I bet the treatment up there is better too.  Good luck-hope you can keep in touch.

barbara2013
Member

Re: May Moonbeams

Really  pleased  for  you  Namaste such a relief.  Hope  you  have a fantastic  time  in  Scotland. Xx

namaste
Member

Re: May Moonbeams

Quick update.... finally had my results and it's all clear 🙂

 

Although I know that's not 'forever' it's for now which I can deal with. I'm realistic, I know I'm triple negative and it's come back once already and could do again.

 

But, for me that means I'm getting on with what I want to do. No more living to other's expectations, no more 9 to 5 grindstone, I'd rather be poor than go back to that.

 

So, I'm off to Scotland for the next year while my OH finishes his Phd. While I'm there I'm going to pay to study whatever I like (because it's affordable and I can't do that in England) and work part time in something. Something without stress 🙂

 

Then, who knows? 

 

Thank you for all your support. I'll keep checking of course but hopefully you're all generally getting on with things now in the new 'normal'. 

 

Take care xxxx

 

 

namaste
Member

Re: May Moonbeams

God I'm beginning to feel there's no end to this

 

No results last week as they weren't ready, new appt today at 9.30, then changed to 11.45 and just had a phone call to change it to 3! Apparently they still don't have any results Man Frustrated

 

So fed up with it now. Decided to sod it and booked a trip away. We're meant to be moving to Scotland in 6 weeks and still don't know if I need chemo etc

 

Still, what can you do?????

 

May be back later, maybe not 🙂

 

Glad everyone else is progressing.

Zuzy
Member

Re: May Moonbeams

Hi ladies, hope you're all having a good summer and Marie and Namaste hope you're doing ok.  I (hopefully) just had my last zoladex (mini cheer!). I've been here before, first time they decided I should carry on then with my op being cancelled I needed one today, rearranged op should be before mid Nov so I'm optimistic that there will be no more large needles for me!  Xxxx

Rara
Member

Re: May Moonbeams

Hi ladies

 

i do hope that Namaste and Marie are improving? Sounds like you both had good care.

 

i have been away on holiday having fun! Something I thought would never happen again! 

 

Currently got got ear ache though, so fed up of it, but so small in comparison to our previous illness! 

 

 

Love to you all

 

rachel xx

Aly1971
Member

Re: May Moonbeams

Hi all hope you're all doing ok and enjoying the summer, just checking in to see how you all are especially Namaste, hope the infection is sorted and your results where good news. xxxx

barbara2013
Member

Re: May Moonbeams

Hi Namaste 

Glad you're  back  and recovering- i remember  the drains too well, carrying  them around in a fetching  floral bag! It is a short phase however.  I found it hard being in the  Princess  Royal although medical treatment  really good and much preferred being tended to by the community nurses who were great - a vital service to maintain.  Anyway  keep  doing the exercises and i really  hope  you  get  the  news you want on Thursday.

Everyone  very quiet on here so hope you  are all enjoying  the  summer.   We have son and girlfriend  on a visit from US  which  is  lovely  but I am a bit sad to have cancelled  a planned trip to see  other son in South  America.  I have lost  a lot of confidence in myself, life etc etc which I am trying hard to get back.  Surprised  it has gone on so long.

Enjoy the sunbeams, moonbeams! 

Xxx