Member
Posts: 370
Registered: ‎27-09-2015

Re: January 2016 Chemo starters

Hello ladies,

Thank you for all of your supportive replies, it helps to know that it's not just me who has these worries and dark thoughts.

My pre-op was fine. Ecg all good, guess my bloods were okay as no one has called to say they weren't. It would seem I'm still first on the list for tomorrow's op, and in theatre 5, which is my lucky number! I feel no where near as anxious as I did before my first mx, as at least I now know what to expect operation wise, and I'm hoping it'll all be much the same as before, though as I'm not having ANC this time, hopefully the arm won't be so sore. This may sound strange, but I feel a little excited to be fully flat.

My bag is packed, have bought some new lightweight button up pj's, slippers and a new lightweight dressing gown, iPad is fully charged as is the kindle. Just thinking of what to wear home as need something that I can button up. Last time I wore a tracksuit, however it was in the winter and a lot colder. Fingers crossed that the drain will be removed before I get home like before. I've spent today giving the house a good clean in readiness as well.

Met with the Bcn last week and tried on some new prosthetics. I'm currently a gg cup which has been a pain with trying to find bras suitable for prosthetics, so have decided to go a few cup sizes smaller and am looking at a d or dd cup size.

Fiona, glad you're nearly done with rads. I was quite tearful on my last one, and it'll be nice for you to not have to visit hospital every day.

I hope everyone else is well any enjoying the nice weather we've been having. I'll message tomorrow once I'm back on the ward. Sissy xx
Member
Posts: 94
Registered: ‎13-02-2016

Re: January 2016 Chemo starters

Sissy, I belatedly want to say that I agree with everything everyone else has said, especially that I agree with all the great advice to you and to agree that we all feel the same way at times with the dark thoughts.  I don't think we'll every stop worrying that we'll get secondaries or some other horrible thing.  This has been a wonderful group and a great comfort because no one else really gets it and our loved ones are having to deal with difficult feelings themselves so can't be expected to support us in the same way that we can help each other.

 

I'm over half way though the radiotherapy now.  So far it's been fine.  I'm only 5 minutes from the hospital and mostly have my appointment first thing in the morning.  I have been surprised to feel really emotional during the treatment on some days and quite cheerful on other days with no apparent pattern!

 

I'm struggling a bit with the children all been on holiday it means there's much more cooking, washing and generally clearing up and also taxi ing them and their friends around  TBH I'll be glad when they're all back at school and I can vegetate for a week and just gather myself together  before I go back at work properly in September.  Love to you all. Fiona XX

Community Champion
Posts: 654
Registered: ‎02-09-2015

Re: January 2016 Chemo starters

Hi everyone, I agree with you Kim, this is a good place to come to when we need support as we are all pretty much at the same stage in recovery and totally understand all the feelings we are experiencing. 

My fingernails have  nearly all broken halfway down, but are already growing back. I thought I had managed to keep hold of my toe nails but I tripped up the stairs, caught my big toe and the nail cracked and fell off. Not particularly attractive now when I wear my sparkly sandals! 

Im also exercising daily and trying to eat as healthily as I can. I have had just  had an indulgent weekend as I had family staying so it's back on the straight and narrow from today! It's a question of getting the balance right and enjoying life but doing everything possible to reduce recurrence odds.

Good luck with your op this week Sissy. My second mx was less traumatic than the first and less sore as they didn't take any nodes out. I'll. It will be good to get it over with.

i hope everyone else is ok,

claire xxx

 

 

 

 

Community Champion
Posts: 638
Registered: ‎20-12-2015

Re: January 2016 Chemo starters

Sissy, I hope your pre-op went well and you're all set for Thursday - sending you loads of love and good luck for a speedy recovery afterwards Smiley Happy  I definately have times when I feel like you do about re-occurance and whether they've managed to zap any stray cells.  I was pretty shocked when my oncologist wanted me to take bisphosphates daily to guard against re-occurance in the bones - it brought back to me the seriousness of it all, but I guess I have to be thankful there are things I can take to help, and the majority of the time, I don't really think about it. I did send a request to join the facebook group, but nothing came of it, which is probably for the best.  I'm on Facebook alot of the time and I try to use it as a positive thing - seeing photos and comments that make me laugh or smile - anyone who posts negative things all the time gets hidden!! So for me the best place to come for support is on here, plus I like to catch up with you guys to see how you're all getting on - I see you all as friends after what we've all gone through and the amazing support we gave each other.  Plus I want to continue to support you all during our shaky times too! (Hope that makes sense!)

 

I think my hair must be the same length as your Mechele!  I love the feel of it, but like you, wish it would speed up growing!  I'm desperate to get it coloured and ditch the wig!!  

2 of my nails have split and peeled off to about 1/3 the way down now.  I'm surprised how much this didn't hurt!! I'm quite squeamish about my nails, but it hasn't been as bad as I imagined.  My eyebrows are back - could do with having them neatened up now, and my eyelashes are definately thickening up now too Smiley Happy

 

I bought a Nutribullet the other day and I'm blasting spinach, bananas and various other fruits to boost my vitamin intake which hopfully will work wonders on my energy levels and hair and nail growth!!  Keeping up with my daily walking and I'm hoping to start yoga again in an attempt to reduce the stiffness and aches and pains the Anastrozole is causing!!

 

Off to Cardiff tomorrow with my son to see if the house he's renting with friends for the next year has been cleaned to a decent standard and the window that he opened last week (when he was supposed to move in) and fell out into the street below has been replaced - luckily it didn't land on anyone!!  I have a feeling we're going to be disappointed! 

 

Hope you've all had a good weekend Smiley Happy

xxx

Member
Posts: 167
Registered: ‎26-12-2015

Re: January 2016 Chemo starters

Hi everyone, such a glorious day and so good to see the sun shining, doors open etc.

Hope everyone doing ok and having a good weekend.

Claire, hope you've had an excellent weekend with the family over, despite lots of cooking, seeing the photo, your hair is looking good - certainly been worth 'cold capping' for you. Just wish mine would speed up a bit , it's about 1.1/2 cms now !!!! 

Sending best wishes to everyone , Mechele x

Member
Posts: 167
Registered: ‎26-12-2015

Re: January 2016 Chemo starters

Hi Sissy, just thinking about you and hope all went well with your pre op - sure it will have done. I'm sorry you're feeling so worried and anxious , I'm sure like others have said, that we all have some degree of the worry of the future - a lot of negative comments can certainly have an impact on us. Hopefully you may feel more positive after your surgery. 

Sending best wishes and hugs

Love Mechele. X X 

Member
Posts: 50
Registered: ‎06-02-2016

Re: January 2016 Chemo starters

 

Hi sissy. Hope your appt went well. We have to find a way of dealing with the anxiety and it sounds as though you need someone to talk to. Could you access some counselling? I would think hubbie is clinging to what the professionals say because it's how he can deal with it. They are the ones who know what they're doing but I'm sure we all wonder if they have got it wrong sometimes. I would think it's harder for you to really move forward when you have more surgery ahead of you. At my last onc appt I asked whether it was really necessary for me to take tomoxifen because I want to get back to how I was before bc and I don't like the thought of taking it for the next 10 years. He said that I have to accept that this is the new normal for me. I expect we are all now trying to accept our new normal. Don't give yourself a hard time over feeling how you do. Ellie gave some good advice...and get help if you need it to manage your anxiety. Love and hugs. Elizabeth x

Community Champion
Posts: 654
Registered: ‎02-09-2015

Re: January 2016 Chemo starters

It is easier when you are busy and distracted  from it, but I am also trying to live by the philosophy  that I feel really well right now, I don't know what the future may hold, but I should enjoy every good day I have. 

Dr M copied me onto her letter after my appointment on Mobday and it was really positive saying I looked really well and there were " no clinical signs of recurrence" I'm going to try to think of that when I have a wobble!

i hope everyone else is doing ok. It's good to have this to come to when we need to touch base with others who really understand.

ive got the in laws staying this weekend do lots of cooking!

enjoy the warm weather,

claire xxx

Member
Posts: 370
Registered: ‎27-09-2015

Re: January 2016 Chemo starters

Thank you Ellie and Claire for your replies. When I'm at work or busy out doing things I'm a lot better. Last night I went out and had some fun and didn't think about aches and pains at all. I think once I have the pre op done tomorrow I'll feel better about things.

Ellie, It's interesting what you said about doing what we can to prevent it coming back. I'm starting back with exercise again as I need to get my fitness back on track for work, and I'm continuing to eat the fruit and veg etc. Next weeks mx will reduce the chance of it returning in my remaining breast and then next year I'll probably have my ovaries removed.

My husband keeps saying that I need to just trust what the Bcn, oncologist and surgeon have told me. whenever I've asked them they just say that all cancer was removed during my first mx and ANC, that the pet/ct showed no rogue cells or spread, that the chemo and rads was belt and braces, and that as far as they're concerned all the cancer has gone.

I'm strangely looking forward to my second mx as I'm fed up with being lop sided, I'm worried that something will go wrong in my pre op and I won't be able to have the op.

You're the only people who really understand these feelings xx
Member
Posts: 209
Registered: ‎01-11-2015

Re: January 2016 Chemo starters

Hi Sissy,

 

i certainly have moments like that! I don't think we would be human if we didn't. I have stayed away from things on the internet that pull me down! It's very easy to find them! We have a cancer support group at work but the leader told me not to come - I was doing so well that I would come off worse if I mixed with that group!! 

 

I like to to think I am a strong person but when the breast surgeon said I was okay yesterday I cried!  It was obviously on my mind more than I would admit. 

 

Sissy I think your anxiety is all connected to it coming back? These thoughts might not help at all, but if one helps a little bit I will be glad!

 

What can you do to reduce the chances? Personally I could lose weight and take more exercise but the rest of my lifestyle is pretty good eg loads of fruit and veg, no smoking.... Can you throw your energy into something positive? I have one friend who decided raw food was the way forward for her and threw everything at doing that. Drove her family mad but it was positive energy! 

 

If if you can't reduce the chances then does worrying do any good? It is good if it makes you turn up for check ups! 

 

Share your worries. Talk to a counsellor or a friend. Sometimes a partner is too close and also desperately worried about you. Your gp should be able to help. I give myself good advice all the time and sometimes it helps and some times I'm too worried to take it! 

 

Do you believe in God? I know some people find it a help when they are pushed beyond their limits to take it to the Lord in prayer. Sometimes that can bring peace. 

 

I wish I could do something to help but I know in my moments when I haven't thought I could cope just knowing there are people on this site who understand and send sympathy has really helped. 

 

I hope you find something that works for youso you can start enjoying things again. Lots of love. 

 

Community Champion
Posts: 654
Registered: ‎02-09-2015

Re: January 2016 Chemo starters

Hi Sissy, I think we can all relate to what you are saying and coping with the fear of it returning is going to be so hard for us all. I'm in a fb group too ( the same as you I think) and every time I read about someone with secondaries it lowers my mood and makes me very anxious. I am thinking about leaving the group so it doesn't come up on my news feed. I keep thinking if it has happened to these other people then it might happen to me too.
I'm hoping the moving forward course will help too.
On a positive note we are all getting better everyday and I certainly feel really really well.
Good luck with your next op. That can't help the anxiety either.
This is the place to find others who understand. It's difficult for family members to really get it.
Lots of love
Claire xxx
Member
Posts: 370
Registered: ‎27-09-2015

Re: January 2016 Chemo starters

Hello all, sorry I haven't checked in for a while, have been busy back at work trying to get back to my new normal and spent a week in Spain on a family holiday. I see a few of you have also had a holiday, very much needed after what we've all been through!

Five of my fingernails have broken so far, though there's new nail coming through underneath, eyebrows are back and my eyelashes are growing really well, my head hear has thickened and is no longer patchy so I've now started to go out without wearing a scarf, a bit daunting at first, but now I'm used to it!

I was doing well with being positive for my future prognosis, however last week there was some sad news on one of the FB forums I'm on, which has lowered my mood and positivity and my anxiety has increased. I'm now hyper aware of every ache and pain and keep imagining the worst, so much so that I'm now worried to have my bloods taken tomorrow at my pre-op for my mx next Thursday. A lot of my worry also stems from the time when one of my liver bloods were high after I was admitted to hospital after my first docetaxel, even though all bloods were fine for the remaining two treatments and the oncologist said that the high reading would have been my body reacting to the chemicals and that she wasn't concerned, also the liver u/s was clear, I can't help but wonder what if they're wrong. Sorry to be so negative, my husband is losing his patience with my anxiety over it all. I've had a chat with the Bcn and she says its normal to worry like this and that nothing I've told her gives her cause for concern, however I feel as if I'm driving myself mad and the thought of worrying like this forever is draining.

How are you all coping with the moving on? Sorry again to be so depressing xx
Member
Posts: 209
Registered: ‎01-11-2015

Re: January 2016 Chemo starters

I see the breast surgeon on Wednesday and then the oncologist in September. Bit worried I am still so out of breath it stops me doing things but probably still getting better. I tried some decorating this week - first time this year I have felt motivated!  

 

Thanks fir for the good wishes about my work situation folks. I am writing applications but don't really want to leave! I am sure it will all work out in the end. 

 

Ellie. 

Community Champion
Posts: 654
Registered: ‎02-09-2015

Re: January 2016 Chemo starters

Sorry to hear you have to take more medication Kim, but as you say, if it stops the damn thing from returning it's worth it!

my nails have nearly all broken off too, but they are already growing back and quite honestly Im not that bothered about my nails. I'm really happy to have eyelashes again and love being able to use mascara!

I hope everyone else's follow up appointments go ok. I've got surgeon in September and the onc said she or him will see me every three months for two years, then it will be six monthly until I'm signed off completely. Fingers crossed that's what happens! I will also be referred to the plastic surgeon and hopefully have reconstruction next summer.

claire xx

Community Champion
Posts: 638
Registered: ‎20-12-2015

Re: January 2016 Chemo starters

Hi! Had my follow up appointment with my oncologist today too - the main one who is lovely and knows her stuff!!!
She's happy my aches and pains and general stiffness of the joints are Anastrozole related not anything sinister and as I can manage them without any pain relief generally all's good! On the less good side, the recommended treatment when on Anastrozole is also to take a daily Bisphosphonate (If you're on Tamoxifen then that protects your bones from pesky rogue cancer cells anyway) so she's writing to check that my kidney specialist says it's OK. I've been prescribed a weekly one which is for the effects of osteoporosis but doesn't protect against bone cancer (wasn't aware this could be an issue until today, but I'll take anything to help protect myself from anything returning!!). The pain is that apart from the dodgy side effects (irritating my asophocus - how ever that's spelt!, attacking my jaw and affecting my kidney function) you have to take it first thing in the morning, with a large glass of water and stay sat upright for 30 mins before being allowed to eat or drink anything else and then you can lie down again! I was just coping with doing this in a Sunday, but daily is going to take some planning as my husband has got in the very good habit of waking me by bringing me breakfast in bed every morning - a plus side of having chemotherapy for all those months!
Makes the fact one of my nails split and broke off a 1/4 way down pale into insignificance! I guess I'll get used to it 😕
I'm not brave enough to ditch the wig yet, although I'm happy that my hair is growing back well. Will wait until I can dye it before I do. I don't wear it around the house and garden, and don't worry about answering the door without it 😊 I'm happy in my wig, which I never thought I would be!
Pleased all went well with you today Claire, I have a phone consultation with my oncologist in 4-6 weeks once she's chatted to the kidney specialist to sort out my new tablets, then I see her again in 12 mths time. Was surprised because I assumed I'd be signed off from oncology (don't know why) and just have appointments with the surgeon and yearly mammograms ...
It's great to hear from you all still 😊 Sorry if I've rambled on!!
Take care xxx
Community Champion
Posts: 654
Registered: ‎02-09-2015

Re: January 2016 Chemo starters

Hi Everyone, good to hear from you Fiona. I hope the rads go smoothly. Don't worry too much about the hip and back pain. I have had the same forages ( long before bc) it's arthritis and was prob due to years of riding and skiing! I'm sure yours will be ok too.
Had my first post treatment follow up with the lovely onc today. All good and she said.l I look really well and I have a very good prognosis! She even said that as my hair is thick and strong I can dye it and even go blonde again!!! I don't have to see her till December now.
Big relief. I was nervous about seeing her and walking back into the hospital brought it all back!
Love and hugs to all
Claire xxx
Member
Posts: 167
Registered: ‎26-12-2015

Re: January 2016 Chemo starters

Hi everyone , good to hear from you Fiona and hope rads progress uneventfully. Good re just arthritis ( presumably osteo ). 

Claire - look forward to hear your review went well.

Debbie - wonder if you too have braved being without your wig. My two are in the cupboard for now, however, think I may take then on hols for evenings when out for dinner, but may be too hot and won't bother !! 

Hope everyone else ok, and work situation settles for you Ellie 

love and best wishes to all, Mechele.

Ps - having a restful day today. Yesterday, had my sons little boy aged 2 and my daughters little girl aged 2.1/2. Although they play well together, oh boy, wish I had their energy for sure. They left at 7pm, having had tea, bathed and in pjs ready to go straight to bed - ha I too felt like going straight to bed too 😂

Member
Posts: 62
Registered: ‎15-09-2015

Re: January 2016 Chemo starters

Dear Ellie

 

I am really sorry to hear that you're having a tough time at work. I have been fortunate to able to work from home quite a bit, but when I do go in the office, it does feel a bit different, when you haven't been around for quite a while...so I understand what you mean, I think we must be less resilient.

 

No matter how many nice supportive people there are around you it only takes one person to make you feel less confident and miserable. I think that's why I got into a whirlwind of worry over my tablets. I think we have been through enough without people being awkward or nasty, I am sure others will see what is happening at work and be supportive to you. I hope things improve for you soon xxxxx

From Cassy x

Member
Posts: 94
Registered: ‎13-02-2016

Re: January 2016 Chemo starters

[ Edited ]

Managed to post the same thing twice - out of practice!

Member
Posts: 94
Registered: ‎13-02-2016

Re: January 2016 Chemo starters

Morning all.  I've been off for a while, had a lovely holiday in Tenerife, and have started radiotherapy.  I have to have four weeks of treatment, and have only just started.  Ellie I'm so very sorry to hear about your work situation.  It sounds awful.  I hope you can find a way to handle it.  I think I would just want to leave if it didn't get better quickly.  I haven't got much patience any more and only want to have positive experiences!

 

 Lovely picture Cassy.  Nice to hear that everyone seems to be recovering well.  Hope the lymphoedema is under control in this hot weather.

 

I still ill have pain in my hips and back.  I'm still worrying that I've got bone mets but don't see the Dr again until 18th August.  On the phone they said my X Ray showed arthritis so hopefully that's all it is. Never thought I'd be pleased to get arthritis!

 

lots of love to you all. X