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Am I in a good place

14 REPLIES 14
pumpkinsue
Member

Re: Am I in a good place

Hi Angela, 

                    Pumpkinsue here!  Sorry for the late reply!  You asked me how I was finding the herceptin,perjeta, tamoxifen and denosumab combo I am on at present.  All in all it isn't too bad.  I would say I have some bowel issues at times!  It is interesting that you started your periods again on the tamoxifen.  I honestly thought the same may be happening to me.  However my onc carried out a blood test and I am well and truely in the menopause.  I think I am slightly older than you at 46 nearly 47.  Hoping you are feeling as OK as you can.

 

Best wishes

 

Sue XXX

elliedog
Member

Re: Am I in a good place

Hi Sarah
I have been wondering how you have been. Its good to know you are still NED and your treatment is still working. I think I am trying to be normal but seem to have a few hiccups here and there. I think living in denial works best for me most of the time and the thought that there are still many ladies living longer and well out there.For the most my body feels well but when i am not busy the head starts to play tricks on me. Its good to hear from you Sarah. Stay well. Angela x
SP0
Member

Re: Am I in a good place

Hi Angela,

I've not been in touch for a while - have been 'pretending to be normal' after returning to work, NED for now!  I'm about 6 months ahead of you with similar diagnosis and treatment if you remember. 

Thought worth recalling the story that after completing my aggressive treatment and getting to NED, I found myself stuck psychologically.  I sought help from a psychologist through the palliative care service and finally made the breakthrough that I was stuck 'waiting to die' despite my NED status.  From that point I decided to focus on living instead.  Happy to say I returned from a ski holiday a few weeks ago, having spent 6 months exercising to build up my strength.

I'm not waiting for latest ct scan results, so I'm not pretending it's easy, but determined to make the most of everyday.

Wish you well.  Sarah.x

2catlady
Member

Re: Am I in a good place

Hi,Angela,I'm glad you are feeling in a better place now. Xxxxx thank you for mentioning what your nurse said,that's good news.
Have a wonderful time in Scotland ,take care and huge hugs,Helen xxxxx
elliedog
Member

Re: Am I in a good place

Hi Katherine. I love the way you talk.I am feeling in a much better place now, i do think it was probably the hormones playing with my mind.Its fab to hear from another liver met lady that is doing well and your so right treatment is advancing all the the time,my research nurse was telling me only the other week how quick treatment is advancing for SBC.Thanks again Katherine just what I needed to hear before I head of to sunny scotland for the week. Take care xx
Katherine2701
Member

Re: Am I in a good place

Hi Angela, you are in a GREAT place! I know it sounds weird but your mets are negligible, treatment is being advanced all the time and you are in a better place than other people who may have a sudden heart attack and not have time to say anything to their families. I'm stage IV with multiple lung and liver mets but my liver mets reduced in size and number through chemo which I thank The Lord for every day. We are in a good place. Yes it could be better but it sure could be a lot worse so take a deep breath, list ten things you are happy for in your life and then get back to enjoying them.. I know how hard it is but you can do it if every time you feel low you list your blessings. However, it probably was just your hormones so hopefully you are back on track now. Take care xx
roxy12
Member

Re: Am I in a good place

Hi Angela, I only swim a very lazy breast stroke when I go. Nothing too hard! I bought myself a swimming cap so nobody knows I have no hair!

We enjoy the latte in the cafe after more I think. 

Take care. Xx

elliedog
Member

Re: Am I in a good place

Thank you so much roxy and desi. Today seems a lot better. I'm of work at the moment as I work in a school and the boys wanted to do their own thing yesterday so I suppose I had to much time to think.But today I have kept busy getting ready for the hols which stops the mind thinking and the body feels better.Also trying to plan nxt hols in May. Desi we love Wales have been there a lot hope you enjoy your hols and yes I hope the weather holds out for us both. Roxy cant believe you are swimmiing while on Tax that is amazing.That will help the Tax kick the mets butts.Happy easter ladies.xxx

roxy12
Member

Re: Am I in a good place

Hi Angela,

I know exactly how you feel about things. I am the same. I am OK if I am kept busy. Its when I am home alone and have nothing planned that I get depressed. Most of the time though I am busy. I take my dogs on the moors every morning and I always think that while I am able to this I must be relatively well! I have been swimming today as well but I am tired now. I am on taxotere at the moment though and do get very tired.(only one more to go though!)

If I am down I look on the web for those who have survived 5years or more with Mets and there are a lot out there so why can't we? It does lift me when I read about somebody who had Mets to their liver 6years ago and are now clear. 

Don't forget Angela there are some fantastic treatment s out there and they are getting better all the time.

Enjoy your holiday. I love Scotland. We have been all over and always get a cottage so that we can take our two dogs. I plan on going this year too. Take care. Love Sheila. Xx

 

Desi-2
Member

Re: Am I in a good place

Hello Angela it must be so difficult for you with your boys being so young still. Awful as this situation is I am thankful that mine are in their 20's. Hope you have a great holiday I would like to go to Scotland some time too. We are off to Wales on Saturday for a week so hope the weather holds for both of us. We only do dog friendly holidays for the last 5years but we ve seen some lovely places we probably wouldn't have gone to otherwise.

Take care xx
elliedog
Member

Re: Am I in a good place

Thank you ladies for very considerate replies. I am feeling better about things today I wonder if I felt down because I was starting a period that has always made me feel a little down.
Pumpkinsue I still wonder if the mx fractured my rib,plus I do remember having a bad cough towards the end of chemo. I suppose a fracture could of happened at any time.Its interesting to see you are on the same mixture Pumpkinsue, how do you find it? Although I'm not on tamoxifen at the moment I am hoping to go back on it.I also know what you mean about sleep being the only place that gives you peace of mind thats why I actually sleep well.I think the year anniversary is also adding to things as I thought I would never get here. When my mind feels well I am ok as my body is actually quite normal and I still get on with everyday life, work, kids etc.Sorry I have gone on again. Looks like its another day of lovely sunshine hope its the same in your part of the country.
Tracy thank you for your kind reply. I do try not to look to far ahead but sometimes I find it hard with two boys age 10 and 15 and I start thinking silly thoughts that i may not see them grow,although the sensible part of my brain knows I am in a good position and I stand a good chance of seeing them grow up.We are of to Scotland next week which I am really looking forward to.Plus I try to plan holidays 6 months at a time as my scans are every 6 months.Thanks again for your kind thoughts xx
Angela xx
pumpkinsue
Member

Re: Am I in a good place

Dear Elliedog, 

                           Sorry to hear of your ups and downs lately.  If it is any consolation I often similar feelings to yourself.  I have definite bone Mets one which fractured my femur and three smaller ones.  I think the problem with bone scans is they aren't always as clear as we would like.  To begin with only my fracture showed up and the micro ones only came to light on a CT scan because they were a few mm each.  Then once I had the taxotere I had another bone scan which lit up like a Christmas tree.  This time I was told it was that this was a sign of them becoming sclerotic which was a good thing. It is just so hard to get your head around all this.  The bone scan also showed some degenerative changes in shoulders and knees.  I think this is why you can only be stable with bone Mets.  I also had an xray of my hips in March 2013 which showed only minor degenerative changes.  Lo and behold less than 2 months later my hip fractured.  I was then told my organs were clear from the first CT scan only to read from the 2nd CT scan that the 'liver met' had remained unchanged.  Needless to say I went into complete meltdown at this.  I have been assured that it isn't a met.  I also discovered I had a 4cm ovarian cyst plus possibly a cyst on my thyroid.  I was also diagnosed with a malignant melanoma in with on my left forearm.  I am sorry to ramble on but I think it so hard for us as we have to trust the people who treat us but it is obvious every result or scan is open to interpretation.  I feel like I want to believe everyone but it is extremely hard.  Like you I am hopefully maintaining on herceptin, perjeta and tamoxifen plus denosumab.  I think what I am trying to say is we all want to know for definite what we have or don't have and it doesn't always seem possible to get definite answers.  We are then left with uncertainty which makes me anxious and it is quite exhausting.  Sometimes I literally have to get to bed early as sleep seems to be my only escape from all the worry.  

 

I am sorry I am not sure this is all very helpful but I just wanted to empathise with you and to say you are not alone in this.

 

About your rib fracture could it have been caused when you had your mastectomy?  I think you can fracture your ribs by coughing violently.  I suppose it can't really be biospied as it is healed. This could give you some peace of mind but I think it can be painful.  

 

Anyway I wish you all the best.  I wonder as we are both coming up a year whether this is adding to our anxieties.  In some respects it all seems like yesterday but also a whole world away.  

 

Pumpkinsue XX

 

 

 

 

 

 

 

 

Desi-2
Member

Re: Am I in a good place

Hi Elliedog I can't help with the liver met side of things as I've no experience of that but I had a rib met diagnosed last September. I just spiralled down badly at first in fact probably until about the end of Jan but I find now I cope better and enjoy each day by trying not to look to far ahead. It doesn't work everyday but I'm having more good days than bad now. My rib met stayed contained for approx 2years before I knew what it was so yours could too. I did have some help with counselling and anti depressants to help me sleep and I know these are not for everyone but don't be afraid to take some help if you need to. Hope we have some more nice weather and maybe plan a few outings to look forward to. (Hope that doesn't sound to naff) but it's worked for me at the mo. Take care and best wishes xx
Tracy
Jo_BCC
Member

Re: Am I in a good place

Hi Elliedog,

 

After reading your post I wondered if you have tried using our Secondary Live Chat service?  There's a session running tonight starting at 8.30 - 9.30pm, the session is hosted by a nurse and faciltated by a moderator so there's always someone to talk to.  The session on Tuesdays is a very supportive session where there are a few users who use the service regularly and welcome and support anyone new to the session.  They've a wealth of knowledge and experience between them and are only too happy to share with others.  I've put you the link below for you to have a look at.

 

http://www.breastcancercare.org.uk/community/chat

 

Take care,

Jo, Moderator

elliedog
Member

Am I in a good place

Hi ladies. i know I am a year down the line now with stage 4 but I still feel really new to all this. As some of yo may already have read I have had a recent ct scan and bone scan. Ct scan showed liver clear(orginal met) but something suspious on a rib. Bone scan is now showing the rib is a healing fracture and not a met. Oncs are getting together to decide weather to treat it as a met or just sit and wait.Then today I came on my second period since finishing chemo in september.I saw the gyny consultant on friday who used a camera to have a look arond. He found no polyps and took a biopsy. I came of the tamoxifen about six weeks ago because they wanted to see the gyny. I know my ct scan would have shown anything sinister around the ovaries and I also know its common at my age (44) to have periods on tamoxifen but I don't seem to be able to settle and except any good news I get.I suppose I am not sure this is good news in the stage 4 world but then I read about ladies that had liver mets stay NED for many many years so why cant I move on and except that might be me.Is it good ladies to have cleared the liver and nothing else showing in any other organs and now hopefully clear in the bones or do I just need to give myself a good kick up the backside and get on with living. Sorry for the moan ladies but I would really appreciate your opinions.xxx