Hi Daisy,
so sorry to hear about mum, what a rotten time she is having. Hopefully they will be able to sort things out for her so she can get home to you as soon as possible
much love,
Moijanxx.
hi ladies, just returned from a few days awy in tenby. Weather was fantastic and the break really did us good especially my husband who has been finding things too much recently. Havent had chemo for 5 weeks now (although if you count the 3 weeks cycle its only 2) and i’m convinced my skin mets are worse…may be just me. My onc seemed pleased with everything and the district nurse today, a new one, said the area was healing well and shoud get better now as my body can put more energy into the healing process rather than coping withthe effects of chemo?? we will see.
Marierose, read about your scan fiasco. Replied on scanxiety thread. I agree though tat you should go to Sheffiels and see what they say. Even if it all comes to nothing at least you will know. If you do decide to look into the treatments please let us all know…there hasnt been mch info on this sort of thing but there wasnt on ECT and look what it did for us.
Love to all. x
Hello skinny friends
Well I am in limbo land at the moment. My skin met treatment has been put on hold for now until I can get sorted on a new treatment which I have wrote about on Cape and scanxiety threads.
stresshead I look at my skin mets and I see new ones only little but they are there. I am unsure but I think I have a new one on my spine it has been there about 3 months now I did show BN and onc at the time but they were unsure about it.
I have now got an area that was ulcerated before which seems vulnerable its only small but I caught it in the bath and I got into a right mess blood was pouring from it and it wouldn’t stop. I managed it with a flannel and put a dry dressing on just like before and it did dry up but now I only dab that area with water.
I have mentioned it to the onc but her concern is the other blighters at this time. My blood does seem to be pouring out more quickly I was concerned but they say blood is ok apart from a rise in a name i can’t remember but it is to do with the bones and it was nothing to get alarmed about as it was only a little rise.
So you can see I am in a bit of a mess at the moment but I will bounce back.
Love and (((hugs))) to all xxx
We all seem to be having so much trouble with these maddening skin Mets,they bother me more than what’s going on with my liver, I think with that it’s out of sight out of mind.
After deliberating weather or not to have further chemo I decided I couldn’t just sit and watch them get worse knowing I could have treatment which could help so had my first Eribulin yesterday. Haven’t used cold cap this time as it only takes about 10 minutes would be nearer 3hours with it,some say hair thins others it all falls out so I will take my chances, have ordered a nice wig.
You were lucky in Tenby Stresshead,whenever we go to Wales it rains,lovely place though.
Take care
Jan
Hi all
I am in a hospice with my mum. Mum was admitted to hospital last Thursday as they suspected spinal decompression. This was ruled out and they seemed confident it was peripheral neuropathy, although a very bad case. Unfortunately following further scans it was finally diagnosed as leptomeningeal metastisis seen in the spinal area. Mum has deteriorated rapidly. We came into the hospice on Wednesday. Mum was in lots of pain - legs, lower back, leg weakness, numbness, pins/needles at home. This got worse and whilst in hospital she became increasingly confused - intermittent - deja vu and random conversations- at first thought to be due to the painkillers. At first though there were normal conversations and she got to tell me how much she loved me, that she’d always be alive in my head and that nobody could take that from us. It has been such a rapid decline and one that was always filled with more promising news than the truth. First, over a year ago, she was told the chemo destroyed all the cancer in the nodes, then when they realised this was wrong (they took the wrong nodes out to check) she was told she was in a good position with only 2 nodes affected, then told the skin met was a cyst, then given estimate 12-18 months(1.5 months ago), then even up to 6 weeks with meningeal mets. That was a few days ago. The hospice tell us it’s going to be soon. I won’t begin to describe how I feel. Mum seems out of pain now, although not showing signs of communication now. I have only left her side briefly as her brother and sister are here so giving them some time. Thought I could update on here although I’m anxious to get back in there.
Sorry to bring bad news to a thread that already seems full of worry.
Wishing you all the best with your treatments and hoping you, and any future women reading this (as I scoured the previous posts) all the best.
Xxxxx
Daisy …so sorry about your mum being so poorly …it seems to have progressed so fast but I suppose its the nature of the beast with this disease. …it’s unpredictable but enjoy all the time you can with your mum …even if she’s sleeping …hold her hand etc .
I lost my mum to bcc when I was 21 and after 40 years I think of her every day …good memories will always b with you not these recent ones.
Carolyn xxxx
Dear Daisy
I am so sorry to hear your news about your Mother.You have been by her side all the way through this awful disease. At least she has been able to tell you how much she loves you something that will stay with you for the rest of your life.I am pleased you have shared your love and concern for your Mother with us and we would love for you to keep in touch. May the time you have left with her you will see her free from pain.
Much love to you and your family ((((((((((((hugs))))))))))))) xxx
Dear Tournesol
I can only reiterate what Helen has said she has put it so beautiful. We are all with you in our thoughts and prayers.
Please keep chatting on here we would love to chat with you.
All our love and sendng loads of (((((hugs))))) xxx
Thank you everyone. I’m not sure it’s sinking in. She was amazing. I say was as she passed away just before 4pm. I stayed with her for a few hours afterwards.
Tournesol - my heart goes out to you. I know nothing can change this but I feel I can give you some advice. Tell anyone important to you precisely what you feel about them now. I say this as confusion starts to kick in fairly rapidly with the Mets and the medication. My mum started with confusion as they diagnosed it. Fortunately she has some non confused states the first couple of nights and we managed to say some last important things. Not that we hadn’t covered them but I was desperate to tell her that last million times that I loved her and hear her say it back.
My sister made it back from Canada amidst all the confusion but my mum still managed some small snatches of smiles and telling her she loved her.
Sending you lots of strength to get through this in the most comfortable way possible.
It’s truly heartbreaking what you’re all going through.
Hoping that sharing my journey may help someone in the future.
Xx
It’s also my first year wedding anniversary today. I’m going to make sure that each year I celebrate my mums life on this day now. Xxx
Daisy …Im so sorry that you have lost your mum …but with the quick progression , she is now free from pain and you have been the most wonderful daughter and she clearly appreciated you.
There will be so much to do the next few weeks but take time to grieve and think of all the happy times.
Accept help and support from friends and family …
Carolyn xx
Dear Dear Daisy
I am so sorry for you all but your mother has now got her wings and will have no more pain. Thankyou for sharing your last moments with her you really have touched our heart strings. I am so pleased she managed to say goodbye to your sister from Canada. Condolences to your family and friends.
Thankyou for bringing Leptomeningeal to our notice it is something I have not heard of before. You have also brought Tournesol back into our thoughts.
Daisy we have become to love you over the past weeks. May you have lovely memories to keep your Mother alive forever.
(((((((hugs)))))) and love xxx
Daisy so sorry to hear your news, thinking of you & your family at this difficult time, thank you for sharing it with us.
Tournesol - sorry to hear you are suffering too, sending positive thoughts to you.
Smartie x
Dear Tournesol
I have tried to pm you 4 times but it looks as though you may not be set up for pm’s.
Thanks to you and Daisy you have highlighted Leptomeningeal I am so sorry you have to go through with it. This cancer is such a cruel desease and stikes us in so many different ways. I hope you are surounded with lots of caring people which is usually how they are in hospices. But come on here and chat as much as you like we have lots of caring ladies who pop in to see how we are doing.and ladies with skin mets who are very knowledgeable.
Sending you loads and loads of love and cyber (((((((((hugs)))))))))) xxx
Are you having treatment for it tournesol? My mums treatment was withdrawn other than medazolam, painkillers and anti physcotic meds. I tbibk that was due to its aggression - but my mums cancer seemed much more aggressive than any I’ve read about.
Xx
Hi Daisy, was sorry to find this sad news when I came on the forum today, your mum was a very brave lady and you gave her a lot of comfort and stays with you in your home…for breaks and support. I am positive she will be watching over you. Am glad you both had time to exchange your feelings for one another near the end.
when my mum died after a stroke, I firmly brlieve she chose to go at that point, because she asked me questions to check that myself and my sister were ok, the night before. I have seen and heard about loved ones making choices about when to pass on. That may not be a comfort to you, now as I recall the terrible pain of loss. You did all you could to help your mum.
love to you and your family
Moijanxx
Tournesol, I am sorry to hear about your situuation. i had been wondering how you were. It was lovely to hear from you. I know we are all thinking of you and please keep in touch with us…we are all here for each other.
Moijanxx
Hello tournesol
Gatecrashing this thread ( I don’t belong here yet!) Just wanted to send you lots of hugs as the days can be long and am thinking about you.
Carolyn xxx
Daisy, have just come to the forum after a few days break and am in bits. So sorry about your mum. I cant say anything more than all have said before. You and your mum were an inspiration…two brave and beautiful ladies. It is so lovely that you are using your special day to celebrate your mum. my thoughts and sympathies are with you and your family.
Tournesol…sending love and best wishes to you too. Without you and daisy i would know nothing about leptomenigeal mets. I have been tellling my onc for 6 weeks that i have had a pain in my neck and base of skull, like i have slept funny or cricked it. He doesnt seem too botheres bt has added ‘neck’ to the instructions for my next scan. Now i know about this condition i will insist its checked out. I hope you are finding the hospice a calm and restful place. I only go as an outpatient bt the people there and the atmosphere seem lovely…i hope its the same for you. xx
janice…so pleased to hear you are trying another treatment. Have everything crossed for you. keep fighting!!
Marierose, so sad to hear you have been out of sorts. I havent read the other threads yet but i really sympathise with you, as we all do. Somehow, having this constant visible reminder makes everything worse doesnt it?
I saw my onc today and despite my worries that things are worse he is not convinced there has been a change. He is still momitoring me every 3 weeks so cant really ask for more…i’m sre he’s realised i am a ‘stresshead’!!
Sending love and hugs to everyone.xx
Hi Tournesol
I do hope you are coping well and send you my Love:heart:and loads of ((((((((hugs))))))))
Hi skinny friends
I have now met my replacement onc he is really lovely. I have decided on Paclitaxol and he agreed with my reason for choosing it and said I chose the right one. He was really thorough with the side effects and when and who to contact when things wrong (temp and all that) and said to go to A&E no messing about. Others always say ring here or there if before 5 o’clock. He had read all my notes that last weeks onc had prepared for him. When I mentioned the lung mets and right tumour being unknown to me he explained why the lung mets could have not been reported on the last scan whereby they were unsure they were mets because of being too small to tell. The right breast tumour he could not explained and appologised that it was not explained to me.
He asked about my skin mets and was aware of my recent ECT and Mr. Mattucci email. He asked to look at them and suggested I leave the two options alone as I would have enough to contend with. He did say he would have a word with the Radiologist and my past radiotherapy back in 1996. He asked if I had heard of him and I told him he was my onc from primary and secondary dx and said he could not recommend it on the chestwall tumour because the left side was scared but Mathew thinks he could catch the bottom few and some on the other side. So it is watch this space for now.
Another thing he is requesting a head scan with the MRI as I have been having flashing lights and swirly lines in my eyes. He also is going to arrange for me to see an eye specialist. If i had not heard from the MRI dept by Monday I have to ring my BN to let them know, But when I arrived home it had arrived and is the 1st October.
So it would seem he is very thorough thank goodness I can’t believe it he may give me a little longer with any luck.
Love to you all ((((((((((((((hugs))))))))))))))) xxx