Hi everyone,
I wanted to follow up this thread that I put on a while ago
I wanted to hear from any stage 4 ladies with mets to the lung. My Mum first had bc when she was 42, she had a lumpectomy and radio treatment. She had ned for 14 yrs then had reaccurance in her other breast and had just the one breast off. She had something called a flap, muscle taken from her back. She was then on Tamoxifen. 5 yrs after she had 12 nodes removed and again five yrs on she has mets to the lung. It all started with shortness of breath and she had it drained twice. She then had plerodesis. They tried her on faslodex but the cancer progressed and she has now had 6 cycles of ec chemo. Her breathing isn’t any better and she can’t really walk anywhere. She also has lymphangitis. She has a ct scan tomorrow then back to onc on 29th April. I am really worried. The onc has told me life exp 2 yrs and I am not coping with this very well. I wondered if anyone knows of anything to help the breathing?
Seen the onc today and I haven’t stopped crying. He said that ther has been a slight improvement. My Mum asked about life exp and he said that’s not changed. She said that she has had 12 of those months now and he agreed. I am finding it very difficult to cope with. He is putting her on Tamoxifen to see if this will control it and then another chemo.
Hi Holly 01 - Just wanted to say how very, very sorry I am that your mum is so unwell, and that this is a terrible time for you both. This will bring your posting back up to the top and you may have some more answers. I know that very many of us will be thinking of you both. I am not surprised that you are finding it difficult to cope, please do post here any time to share your feelings - we will always be here for you. Sarah
Hi Holly
I just wanted to let you know that I understand what you are going through. My mum died August 2006 and we found out in August 2005 that she was terminal, so I had 12 months knowing that she was going to die, I just didnt know when. That year was awful and I also found it very hard to cope with. How could I deal with the fact that I was going to loose my mum? Mum wasnt interested in any kind of prognosis and so she wasnt aware of how poorly she was, and was talking as though she was going to be round for years, and I knew that she wouldnt. I lived that last year in a kind of limbo. I was afraid to go anywhere or do anything, I just wanted to be with my mum. I remember that a Harry Potter film was out at the cinema but I refused to go because I had been to see the other ones with my mum, and I would never be able to watch it again if I saw it after she had died knowing that I had watched it when she was alive. I spent no time with my friends and just completely shut myself away. I was always in tears unless I was with my mum, she never saw me upset. Its so hard to function normally isnt it? I spent a lot of time going over and over in my head what it was going to be like when she had died, I didnt believe that I would be able to live without her, and this was in my thoughts all the time. I am sure that you are the same.
I know that I have not said anything that can help you in any kind of way. So some advice on how to cope…its hard but you are able to cope because you have to. The best thing you can do is spend as much time as possible with her and savour every moment - but then you know that. These memories are what keep me going. Mum was so ill in her last months but I had never felt closer to her - she meant everything to me and my heart broke the day she died. I am sorry I havent been any comfort to you, please ask me anything you like I am here to listen. I know how hard it is to watch your mum struggle and I am thinking of you.
Joanne xxxxxxxx
Hi
Thank you for your reply seabird and Joclare.
Joclare,
My Mum to thinks she will be here for a good few yrs. I don’t know if she is saying this to protect me.
That is exatly how i am feeling. I can never be bothered socialising and want to be with my Mum all of the time.
I have a 9 month old baby and my Mums goal is to see her go to school. I get really upset think about my daughter not remembering her. We are all going to Lakes in June for a few days all being well. I am off to Cormwall on Saturday for a week with my hubbie and daughter. I hate leaving my mum but I do need a break.
I can’t imagine life without my Mum she is my best friend. Just hope the Tamoxifen works.
thanks
xx
I know what you mean about the baby, I found out I was pregnant 4 days before my mum died, she has never met my baby boy who was one last week. I too get upset when I think about my son not remembering my mum. She would have been such a good granny and I cant believe that she didnt get the chance. The holiday to cornwall sounds exactly what you need, its lovely that you are there for your mum but remember to try and make time for yourself as well. Lets hope the tamoxifen does its job, it sounds like to onc is happy to give lots of different treatments to your mum which is a good thing. The onc said that my mum could continue to have chemo for as long as her body could take it. Your mum has hope, just as my mum did. I always think to myself that it was better that my mum didnt know how long she had as I didnt want her to have to plan for her death in advance - as long as she had hope she was happy and truely believed that she would live to an old age, this comforts me when I am sad. xxxxxx
Hi Holly01
Has your mum got a Macmillan Nurse or Macmillan Physio? They have all the information about breathlessness to help your mum. You can contact the local Macmillan office in your area and they will put you in touch with one.
Hope your mum is feeling better. She sounds like a very strong lady so who knows she may be around longer than they say.
Good luck to you all.
xxx
P.S. Hope you like Cornwall. I’m live here and think it’s the best place ever! (but then I would).
Hi Greenpea,
Thank you for your reply. Cornwall was lovely and did help me to relax a little. My Mum is very strong and i just pray she will be here longer. We see the onc again a week on Tuesay. A lump in her neck has gone bigger and she also has one on the bottom of her shoulder. I don’t think the Tamoxifen is working. She is in touch with the Macmillan nurses.
Where in Cornwall do you live?
Feeling very nervous. We see the onc tomorrow.
My Mum has found 2 more little lumps on her arm.
Just hope that there are more treatments for her.
Hi Holly
I’m afraid I can’t offer any advice on your mum’s particular situation and treatment, but I just thought I would say hello as my mum was diagnosed with bone mets about 8 months ago. I understand the shock about life expecancy and how frustrating it is when you want to make sure your mum is getting the best treatment as quickly as possible. I was wondering, how old are you?
Anyway, I just thought I’d introduce myself and offer any support I can. xxx
Hi Nipper,
Thank you for your reply.
I am 37 yrs old. How are you coping with your Mum’s dx?
My Mum started her chemo at Christies yesterday so fingers crossed.
Holly
Hello Holly
At the mo, I seem to be ok with Mum’s dx. It upsets me greatly and seems very unfair as she is a lovely person, always putting others first, but once I got over the itital shock (which took a couple of months) I just adjusted to things. Its horrible watching her hobble around the house in pain. But its also frustrating as she won’t pester the doctor!!! I wish she would make more fuss and tell the doctor about the different pains she has so that something might be done.
But we just take things a few steps at a time. She’s seeing the onc this Tues and I’m hoping there won’t be any new bad news.
I hope the chemo helps your mum and I hope your weekend has been ok! xx