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December Angels 2013

Re: December Angels 2013

Hi wyn great to hear you've had a lovely holiday, how's the bladder problem? Hoping that is also a distant memory!

I got ct results yesterday and I can report that it was all clear. ... soooo relieved. Still no explanation for the cough and back/shoulder pain but pleased its not mets.

Petal I hope you are ok as we've not heard from you in a while x

Xxx

Re: December Angels 2013

Hi Ladies, hope you are all well.

 

Well I'm back from hols and it seems a distant memory now haha. Really chilled out,weather was great and had a few cocktails by the seaside, just what the doctor ordered lol.

 

Petal - sending hugs to you, I hope you are coping well.

Barbie - hope your CT scan brings good news.

Glad to hear Sarahmummy's chemo is working please send her my best wishes.

 

I have my  next oncology appt in a couple of weeks so fingers crossed all goes well.

 

Take care everyone

Wyn x

Re: December Angels 2013

Hello again everyone. Hugs to all of you with lung/rib problems. I was warned about the possible damage radiotherapy could cause but again shrugged it off. No evidence of any damage here so far though.

 

I met my plastic surgeon a couple of weeks ago to start discussing a DIEP flap reconstruction from my tummy. I have to go to a "Show and Tell" evening at Queen Victoria Hospital, East Grinstead in July to meet and see other ladies who have had it done, and I have to have a CT scan of my tummy so he can study it before the op. Then I'll have another appointment with him in the summer, then I need to wait untilk next year because he has a 12 month waiting list. I was really hoping to get it done this year, but I guess I just have to be patient.

 

Sarahmummy let us know that her first cycle of chemo worked really well and has already shrunk the tumours! Unfortunately she got neutrapenic and collapsed, and had to be rushed into hospital. She had 2 blood transfusions. I haven't heard how she has got on since, so have just messaged her. Fingers crossed she's ok.

Re: December Angels 2013

Big hugs petal. I can't even imagine what you must be going thru right now ♥♥ life is so damn precious. I hope you get to make some final happy memories with your sister before she passes xxx

Re: December Angels 2013

Aww petal. Sending you a hug xxx

Re: December Angels 2013

Life can still be so difficult even though we are making progress, can't it? My sister is now in the end stages of her cancer and I find it hard to be happy that I have finally finished my injections. Good luck with the ct scan results Barbie.

Re: December Angels 2013

Hi ladies

Feeling a bit overwhelmed as I've just heard about a friend of a friend who has passed away, she was diagnosed with heart and brain cancer the same time as I was diagnosed with bc. It is so unfair to see a young mother be taken away and with two young children.

Been thinking about Sarahmummy too and hoping that treatment is going well.

Just to update you on my recent appt. I saw onc last week and she is doing a ct scan to see why I've had this cough and pain for six months. I was told not to worry so I'm not. Life must go on.

How's everyone else doing?

Xx

Re: December Angels 2013

It made me cry to read your post. What can one say? It really isn't fair that some people suffer so much and I am sure everyone will be thinking of Sarahmummy and praying all goes well this time. Does her hospital not have someone who can help her home situation? She shouldn't have to take on such a burden and not even be able to tell people at work. In fact she shouldn't have to work, there should be help available to get her through.
Positive thoughts coming her way in bucketloads!

Re: December Angels 2013

Sarahmummy started her chemo again on Friday last week. She has two 3cm tumours in her previously good breast, plus the cancer has returned in her implant breast and has reached the skin. This time she is on gem/carbo and if that doesn't give a rapid response, she has been told they will try Avastin.

 

I haven't heard of these chemo drugs before.

 

She told us she is intending to return to work today and try to carry on as normal. She is scared to tell her employers the cancer is back because she can't risk losing her job, and she is worried about keeping up the repayments on her mortgage. Life is so unfair! These are the last things she should have to worry about at a time like this.

 

Please say a prayer for her or send her positive thoughts. She needs all the help she can get.

Re: December Angels 2013

Hi ladies

Petal that is great news about your scans. It's a scary time waiting for the results but such a relief when they come back clear.

Wyn I totally understand why you don't want to go to the Dr's. You don't want all that worry hanging over you while on holiday. I'm sure it's probably nothing anyway but your gp would automatically send you for further investigation. I hope you enjoy your holiday in majorca.

X

Re: December Angels 2013

Petal - yes it was cystopurin i got from chemist, a two day treatment and it worked. I agree with you that it is prob still underlying and should be investigated by doc but at the moment if I can be symptom free for next few weeks and enjoy my holiday then I will get it checked out when I return if it flares up again.

I have read that cystitis can cause bleeding so I am trying not to worry too much but I feel If I went to doc he woud prob arrange further investigation and I dont want to be sitting in the waiting room again before my holiday if that makes sense.

Sometimes it's so hard to remain positive without connecting every ache,pain and symptom to bc but I am giving it a damn good try lol.

 

Take care

Wyn x

 

 

Re: December Angels 2013

Fingers crossed you stay ok and have a wonderful holiday. How about taking some Cystopurin or similar sachets with you? Is that what you had before from the chemist as they can settle the symptoms? I would say, however, if you get blood you really should see a doctor. Sometimes it can seem better but come back quickly as it actually never got cured properly. I know from experience! I always take spare antibiotics away with me so perhaps your doctor would let you do that?

Re: December Angels 2013

Petal  that's excellent news i bet you are feeling really good,

Barbie - good luck next week also.

 

I have not been to doctor yet I was just a bit worried that last time there was blood in my urine (too much information lol), however when I bought over the counter meds it cleared up within a day so hopefully thats the last I get it.

I have been putting off going to dr as I am going on holiday for 2 weeks to majorca on 25th april and this is my first holiday for over 2 years so I am determined nothing is going to stop me, but I promise if it does come back I will defo go when I return from holiday but fingers crossed I dont need to.

I am not on hormones Petal as I was triple neg and not on any meds, the only treatment available for triple neg is chemo,surgery and rads so once that is finished you are left to get on with it.

 

Take care

Wyn x

Re: December Angels 2013

Hi again! Feeling quite positive today. My stomach ultrasound yesterday didn't find anything nasty, not even a hernia, and the neurologist says my visual disturbances are migraine and hopefully will settle again especially once I have finished the Herceptin.
Wyn are you on hormones? I had dreadful bladder problems on Letrozole but I am prone to cystitis. Sometimes it is an irritated bladder rather than an infection but not nice either way. You definitely need at least a dip test done on a specimen at your doctor's and antibiotics if it is an infection.
Barbie do let us know how you get on next week.

Re: December Angels 2013

Hi wyn

Thanks for your message. I just want it to go away so I can move on from all of this bc now. An appointment has arrived for next week so might get some answers soon.

Never had any problems with bladder so can't help with that. Have you been to Dr's for anti biotic?

X

Re: December Angels 2013

Hi Barbie,

 

Sorry to hear you are having problems and hopefully it's not too serious,

I don't have the same symptoms but have an ache in upper back sometimes, not painful just dull.

I was told by my oncologist that rads may cause some lung/ heart damage,breathlessness and weaken your ribcage and therefore at risk of ribs fracturing (how nice lol), but as you said she told me the benefits outweigh the risks,.

 

Has anyone been having problems with cystitis, I have had  3 episodes in the last 3 months but never suffered from this before so thinking chemo may have caused damage to bladder !!!!!!

 

Hope everyone is enjoying the nice spring weather 

 

Take care

Wyn x

Re: December Angels 2013

Thanks petal How are you doing? I don't remember being told that this could happen from the rads but to be honest I think the benefits out weighed the risks and just wanted to throw every thing possible at the cancer.

By the way I'm loving this nice weather, going to the park later for a nice long walk with a friend and our dogs.

X

Re: December Angels 2013

Sorry to hear about the lung damage Barbie. Radiotherapy seems to be to blame for quite a lot of problems post cancer. I don't have lung damage but oedema is allegedly caused by rads and I know I was told it can affect the top of the heart if it is on the left side. I do hope the specialist can help you feel more comfortable soon.

Re: December Angels 2013

Hi all.

Well that's easter over with. Hope everyone enjoyed spending quality time with family and friends and of course ate lots of easter eggs.

Just wanted to ask if anyone has had any problems with lung damage after radiotherapy. I saw my gp last week about an ongoing problem that I've had for six months. Symptoms are dry cough and pain around shoulder/upper back area. He has referred me to a respiratory specialist as he thinks I may have lung damage caused by rads. Anyone else having similar symptoms?

X

Re: December Angels 2013

Hi,

 

Just popped in to wish all the Angels a Happy Easter, have a lovely day and eat a much chocolate as you like haha.

 

Take care

Wyn x

Re: December Angels 2013

Happy Easter to one and all! Thanks for your good wishes. Next week should see the end to my tests, a stomach ultrasound to see if I have a hernia and Neurology to see if my visual disturbances are caused by migraine aura. Gradually ticking things off the list. Could do with more energy and stopping the hot flushes (even though not on hormones) but when I think back to a year ago.....!
I do hope everyone is keeping ok and in good spirits.

Re: December Angels 2013

Great news Petal - you must be delighted. 

 

It's a lovely feeling once you finish the Herceptin. 

 

So sorry to hear about Sarahmummy - thinking of her and sending very best wishes. 

 

Best wishes to all angels xx

Re: December Angels 2013

Excellent news Petal, the finishing line is in sight now with only two more herceptin to go, you must be so relieved - Get the champagne ready lol x

 

Best wishes to all angels

Wyn x

Re: December Angels 2013

Brilliant news petal, I'm really pleased for you. Hopefully it will just be the herceptin but best to get checked x

Hope everyone else is doing ok! X

Re: December Angels 2013

Just to let you know my MRI scan showed no sign of secondary breast cancer and my blood tests did not show a genetic link to my sister's cancer. I feel very lucky and relieved though I am still concerned about having an increasing number of visual disturbances. I am being referred to neurology now but I do wonder if they will stop once I am off the Herceptin - and I only have two more injections to go!
I hope all Angels are ok.

Re: December Angels 2013

I am so sorry to hear Sarahmummy is having to go through this horrendous rollercoster again, Please pass on my best wishes to her. This is awful news

 

Wyn x

Re: December Angels 2013

Oh the poor thing! My heart goes out to her. Please give her very best wishes from all the Angels.

Re: December Angels 2013

Girls, I promised to keep you updated of any news on the Facebook page.

 

Well, I'm really sorry to tell you that Sarahmummy's cancer is back.

 

She has just told us. Grade 3 tumour in her "mastectomy" breast (not sure quite how, but she obviously hasn't gone into details), plus a new lump in her healthy breast and swolen lymph nodes on the healthy side, so she has had biopsies and needs to wait for those horrible results again. They've told her she will start chemo again soon.

 

I'll keep you informed. Feeling rather sick at the moment. Woman Sad

Re: December Angels 2013

Thanks ladies for your support again, we hhad a good celebration last night.

Petal I hope everything goes well with the mri. It must be an absolute nightmare for you having all these tests going on. Thinking about you xx

Hope everyone else is well and it stays that way for a very long time x

Re: December Angels 2013

Brilliant to be getting good news these days. You must be happy, SJB and Barbie!
Hope they can find a brain for my MRI on Monday!

Re: December Angels 2013

Excellent news Barbie, a few glasses of Rose' sounds good, the problem with me is I would finish the bottle haha, enjoy.

SJB-  thats also good news

Petal - hope your results are good too.

 

Onwards and upwards ladies

 

Take care everyone

Wyn x

Re: December Angels 2013

Hi ladies

Just to let you know I got the all clear today. Radiographer said that there was nothing abnormal on the ultrasound. So I can stop stressing and get on with my life. Here's to a good weekend and a few glasses of rose xxx

Re: December Angels 2013

I saw my consultant last Friday. He gave me a physical examination and declared me healthy. I bloody hope so! Wish we could get scanned to be sure.

 

Anyhow, I've now got my appointment for my mammogram on Monday 16th March, and I've already got my next appointment to see him next February! lol

 

Should get an appointment to see a plastic surgeon based at East Grinstead called Dr Pacifico soon, to start discussing reconstruction.

 

Keen to get things organised.

Re: December Angels 2013

Good luck tomorrow. I had wide excision and node clearance. Still have some problems with scar tissue and tightness but physio is helping. I'll be more relaxed (I hope) once I have results from genetic tests and MRI so a way to go yet.

Re: December Angels 2013

Hi petal

Yes appt is tomorrow for ultrasound. Keeping everything crossed that it's just something simple. Did you have a wle or mx? Just wondering how long before the lumpiness from scar tissue takes to go back to normal?

Really pleased to hear that your mammo and us were ok. It must be a huge relief for you.

X

Re: December Angels 2013

Hi Barbie, do you have your appointment yet?
I was nervous for my mammogram and ultrasound this week but pleased to hear it all looks reasonably ok. The thickened area is probably a combination of damage from radiotherapy plus the oedema that I have. I do hope you get good news soon.

Re: December Angels 2013

Hi Angels,

 

Barbie -It sounds positive, so keeping fingers crossed for you, I would think if dr was concerned he would have found a slot in clinic so hopefully it is just a lobule. Keep positive x

 

Hope everyone else is doing fine and you all have a nice weekend.

Wyn x

 

 

Re: December Angels 2013

Thanks wyn. I saw dr and he actually read my file and admitted that my original bc didn't show up on the mammogram so he said there's no point doing one now. He wants me to have an ultrasound and tried to get it done straight away but clinic was full so I'm now waiting for an appointment which will probably be next week. He did say that the lump might just be a lobule.

Hope everyone else is well xx

Re: December Angels 2013

Hi Barbie,

 

how did you get on at appointment today, i hope everything is ok, sending you hugs

Wyn x

Re: December Angels 2013

I was going to post that I agree with Wyn but you are going today anyway. I am pleased you have had the courage to make the appointment. Good luck and here's hoping you will soon be reassured.

Re: December Angels 2013

Hi wyn

Yes I have an appointment tomorrow morning with breast surgeon. Really hoping its nothing and then I can get on with my life.

X

Re: December Angels 2013

Hi Barbie,

 

I hope you have made that phone call and get checked sooner, been thinking about you.

I check my breasts about once a week, I used to check them more regularly but was getting paranoid about every little change, sometimes very hard then very soft, so gave up trying to work out was was meant to be normal.

I find it easier to check evry week or so now, not sure if I should be checking more regular but I feel this works for me.

Hope everyone is doing well.

Wyn x

Re: December Angels 2013

Thanks for the support ladies. I've been poking and prodding myself all day in the hope that it's all in my head but no it's definitely there. Haven't rang bcn yet (it will all become real once I make that phone call). I have an apt with onc in three weeks so I think I'll ask if appt can be brought forward. I've been a lot calmer today, it really helps to come on here and chat to people who understand the anxiety.

Can I ask how often do you guys check your breasts now? I check mine most days and just wondered if everyone else was the same

X

Re: December Angels 2013

Thanks Wyn, it was good to have my sister with me. I don't know how she stays so positive with her advanced cancer but it does show me that you have to keep fighting. I am still paranoid about all the things that seem to be going on at once but am managing better to take one day at a time and deal with each issue in order of importance and try and distract myself if I start obsessing about a particular problem.
Barbie, do contact the BCN as soon as possible. It should be only a scare but I am sure they will get you seen quickly and hopefully put your mind at rest. I have had some thickening in my affected boob and they got me an appointment within two weeks with the consultant. It is probably the oedema but I will be having my mammogram in March rather than April and will have an ultrasound as well. Do let us know what they say. The nurses are very understanding and say it is natural to worry about cancer returning but it is very unusual to get it in one breast and then the other. You are not alone with your fears and not being paranoid or pathetic so don't let anyone tell you that!
All the best. xx

Re: December Angels 2013

Hi angels,

 

Petal - hope you had a lovely time with your sister, I am sure you both get a lot of strength and support from each other, I also hope you get good results from your blood test, please keep us updated

 

Barbie - sorry to hear about your meltdown but it's only natural for all those worries to come flooding back when you find something different so please dont feel as though you are moaning,that's why we are here so offload as much as you want and we will be here to support you

. I hope everything turns out ok but please contact your bcn with your concerns,

 

Take care everyone

Wyn x

Re: December Angels 2013

Hi guys

Petal you are sounding a bit more positive I really hope everything works out ok for you.

It's great to hear everyone is moving on now. I have been doing well with moving on lately and have been supporting a lady who has just started chemo then bang this morning I had a melt down. Felt something strange in good boob, it's not quite a lump but more a thickening but feels similar to original bc. Had a few tears but then met some friends for lunch so managed to pull myself together. Keep trying to convince myself that it's nothing but need to pluck up the courage to ring bcn. I really don't feel strong enough to go thru it all again.

Sorry for the moan but I don't want to dump all this on friends or family just yet. OH will probably think I'm just paranoid and pathetic.

Hope you are all doing well x

Re: December Angels 2013

Excellent news Jules! I expect it will feel strange (but in a good way) to know you have got through it all!! I hope you will still keep us posted on how you are getting on.

Re: December Angels 2013

Thanks for the good wishes Angels. I am cautiously optimistic at the moment and I have lots going on which at least keeps me busy. I agree I have too much time to think about things and I am sure it is a natural stage in my grieving as well to be scared as I get used to being on my own. The first few months after my husband died were taken up with sorting things out then my DX meant I was on the treatment treadmill and went with the flow of it all whereas now it has sunk in how much my life has changed and I am still adapting.
This week I have had my echocardiogram which shows I am ok on the Herceptin so that's good. The stuff I had from the GP for my scalp has worked really well and I am more comfortable so that is a positive too. Yesterday I had pre-chemo and the doctor was really helpful. She isn't too happy with the spikes in my blood pressure when I get the visual disturbance -and that happened 4 times this week- so I am to have an MRI scan of the brain NOT looking for brain cancer she said but to see if there are any visible changes. It is still likely to be from the upset of hormones from chemo, and having had Letrozole followed by Tamoxifen, followed by removal of hormone tablets...

I am getting used to wearing my sleeve for the lymphoedema and not feeling so sorry for myself about it and now I am waiting to see the other set of doctors about my tummy. The pre-chemo doctor agrees it is a good idea to rule out a link to my sister's type of cancer and I had a special blood test yesterday - only three weeks to wait for those results! I am aware that I know too much about her cancer mainly because she asked me to research it for her and tell her only what I thought she needed to know. The prognosis is not all that good though she is doing amazingly well. She is staying with me this weekend after her latest liver embolisation and is in a lot of pain. It is so hard to see her like this and I feel guilty for worrying about my own problems.
Well this is another long update. Thanks to you all for the continuing support which has really helped me through xxxx

Re: December Angels 2013

Hi angels,

 

Petal - I too hope things work out well for you, it's awful being in the waiting room again but at least they are being thorough and looking after you. I also have frequent flushes mostly at night before bedtime and still dont feel 100% but agree chemo has lasting effects and it will be some time before we can start to feel as good as we did before BC. I occasionally over think things and that sets my mood for the day,don't know why my OH puts up with me sometimes haha.

 

Jules - well done for crossing the finishing line, you will be so glad and hopefully physio helps you.

 

Have a nice weekend everyone

Wyn x

Re: December Angels 2013

Hello Angels

 

Nice to hear your updates - Petal, I hope all works out well for you and look forward to hearing your news. 

 

SJB and Wyn - all sounds great and excellent that you are moving forwards!

 

I had my last Herceptin this morning - round 18 of 18!!  I am having my port out on Thursday which really will signal the end. It looks like I'll need weekly physio on my arm for a year or so, but it's a small price to pay when all things are considered!

 

I will pop by and post as and when - really happy to help anyone in any way that I can. 

 

Take care and big hugs to everyone!

 

Jules xx