Ps Mathew does believe in markers and he wants them done even though they don’t give a true account they do show movement which he prefers
Thanks all. I am pleased it has raised awareness a little - somethings are just not mentioned to us and even the Drs do not realise what it is at first. I’ve read it’s not that rare too.
I have a few questions still for mums oncologist - she tried to call be yesterday but I didn’t make the call in time.
Stresshead - make sure if they investigate your skull/spine, they do it with an MRI - mums ct scan didn’t pick it up, the MRI showed what they thought was spread to the bone in the spine and only further investigation - I think bone scan and a contrast MRI showed it to be leptomeningeal.
Mums biggest symptoms where the horrific leg and lower back pains, numbness in legs - started like neuropathy, then the confusion was deja vu at first. Mum kept thinking what was happening had already happened. She was aware that she was confused though. Then there were random comments and thinking thighs had happened that hadn’t. There was normal conversations too though inter spaces between the confusion. Mum also had a vague headache all along - before her CT scan. I did mention it on here as mum never used to get headaches. Even in hospital mum said it was still there in the background all the time, despite the painkillers. I think she had it throughout the past few weeks.
Mums funeral is on Monday. Moijan - I hope mum is out there somewhere but who knows.
Tournesol - hope you are settled in the hospice. Mums was such a relaxing atmosphere - everyone was like a counsellor and I found myself pouring my thoughts out to all of them - even the Drs. They treated mum with so much respect - so different t from the hospital - that place makes me shudder.
Another word of advice - make your wishes clear to your family that you’d like to go in the hospice if that’s what you’d want. My mum only just made it in there. On the Tuesday the hospital told me the leptomeningeal news - said average is 6 weeks but stressed it was only an average and told me that mums oncologist would come and see me with the actual prognosis. I popped home to get a few nights belongings as they said I could sleep over. I missed the oncologist. They asked if mum wanted home care, hospice it stay in hospital. I knew mum had tried to get her dad in a hospice years ago so I knew she’d prefer that and I told them that- also what I had read on here about the advantages of the hospices helped me choose that. on Wednesday night they said she wasn’t going to make the ambulance run to the hospice as it finished at 8pm (had to be at hospice for 8)and theyd been busy. They said she’d go the next morning to the hospice. Then all of a sudden they turned up just before 8 and took her. When we got there they told us if they had left it until thurs morning she may have been too ill to move and that they’d bent the rules as they knew it’s was mums wish. I was so relieved I’d told them that. I was also shocked as nobody at the hospital had told me that mum was that close. They told me to take it half a day at a time at the hospice. I only just got my sister home from Canada in time.
I will stop telling you about mum now - I acknowledge that it may be hard to hear. I just want to share in the hope it helps - symptoms, hospice wishes etc. This site helped me realise that the hospice was best for mum and I am greatful for that as it made the end of mums life be as stress free and dignified as possible for her.
Xxxx
Dear Daisy thank you so much for your message as I shall be having a MRI scan hopefully with a brain scan as well as the spine. You have highlighted a subject we have not touched on we had a lady who we were very fond off who died earlier this year her husband warned us about headaches.
I would also pleased to read about the hospice I must admit since seeing my dear friend who dx same time as myself is sadly dieing with her lovely family and partner caring for her. It made me start to think about my own situation my husband could not look after me in the same way as my sons live far away.I have been giving the hospice alot of thought so I value your comments.
All the best for Monday when you and your family say goodbye to your Mother :heart:
Tournesol your stay in the hospice is also valued. Cyber ((((((((hugs)))))))) :heart:
Marierose, so glad to hear yo are now more positive about things. I too am really pleased with my new onc. I know he cant work miracles but i certainly have faith in him.
Daisy, my thoughts will be with yo on monday.
Tornesol, glad to hear you are keeping as well as possible. Sending you good vibes.
Love to all ‘skinnies’. xx
RRH, lovely to hear from you. I too am due a scan in October and already dreading it…well not ‘it’ but the results…i will have been off chemo for 3 months so who knows what it will throw up. It must be really tough on you coping with this alone at home but at least you dont have to put a brave face on all the time and you can have a good cry when you want rather than bottling things p to protect others. I think its a really good idea to visit a hospice. I was terrified whrn my macmillan nurse suggested i saw a doctor there but i’m glad i did. Please let us know how you get on. xx
First of all Daisy so sorry to hear about your mum, I’m not as good as some putting things into words but my thoughts have been with you.
Well I have decided no more treatment,had one Eribulin just over a week ago and had a terrible reaction frightened my husband. I was OK for a few days after, think it must have been the steroids keeping me going, then I just collapsed one day apparently my eyes were open but I wasn’t there, after that I felt so ill for the rest of the week. This would have been my 7th chemo and I feel it’s my body telling me no more, Saw my oncologist Tuesday and she agrees with my decision,every time I have chemo it works for a while and then I am back to square one and I have had enough. I did weekly Paclitaxel for 6 months, for what,to be exactly back where I started.
I am comfortable with my decision and have been assured that I will get plenty of support when I need it.
Take care.
Jan
Hello Janice.
When I read your post I was tempted to " read and run" as I’m gatecrashing here anyway but I don’t have any experience or knowledge but all I do know is like smartie you have made a very big decision to enjoy some quality of life without all the toxic invasion. The body is a wonderful thing but it can only take so much medical invasion and I’m sure when my time comes I would probably make the same sort of choice …
All I can do is send loads of hugs
Carolyn xx?
Hi I cant help but agree with you all.Thi is my fourth chemo and the last few months have been a nightmare in and out hospital for drains .six.doses of docetaxol not easy .three months later stomach draining and on erubulin I think I will wait till iv had 3 treatments which is six injections
I have felt bad lately no quality except for family…I have already been going to our hospice as an out patient.get great help and advice.when and if my time comes I want to be ay home for as Long as I can then hospice .
I m at quite a low point
I have discussed it with hubby he sort of agrees with me.usually he doesn’t want to talk emotional.
Really what I’m saying is I understand when people have enough…xxsharon
Thank you all
I have given you all a hug because I think you all deserve it I can hear you all speaking from the heart sometimes the reality of this disease needs to be heard.
Janice please keep us informed like Smartie you have been with us some time and we do want to help you with your decision and be here for you both.((((((hugs)))))) 
To all my skinny friends ((((hugs)))) xxx
Hi all
It’s maybe not my place to input here but I just wanted to share my feelings as a member of the family experiencing it.
My mum want to fight - but it was only her first fight with chemo for secondary spread and she had had such a bad experience with her first treatment.
I am devastated to lose my mum. But I also see all of your fights and I was so worried for my mum as I felt she was going to fight for us (me and my sister).I have a sense of relief that she isn’t going through that. However I admire your fight - and I’d do the same. But…having chemo to end in the same place must be beyond disheartening and I can see why so many of you decide not to fight.
You have to go with what your heart tells you and your family should understand.
Xx
Xxx
Hi Janice, I totally understand. I often think about what it will be like to get to that point. It sounds as if you have made a wise decision and right for you at this time. I also endorse what has been said about hospices. i went in to see our local hospice last Friday to drop in a couple of cheques and to have a look around.
the staff were absolutely lovely. There seems to be a revolving door these days in hospices, with outreach nurses going to help people stay at hme as long as they can/wish. I was impressed with the facilites I saw and I have heard several times from other people that they are’ the tops’ at pain management and sorting out medications.
thinking of you, please let us know how things are going…if you feel like it.
Smartie, lovely to hear from you tooxxx
love and hugs
Moijanx
Janice, just wanted to echo what all the others have said. I understand about having chemo upon chemo to end up back at square one. You are as brave (if not braver) in making your decision as carrying on fighting when you know its a battle you cant win. I remember a few months ago when i was really ill with pleral ffusions etc, my daughter said something like ‘how do you do it?’ and i replied ‘i do it for you and dad’ She said ‘i know why you do it i dont know how you do it’. i suppose there comes a time when you just know yoou cant do it anymore, even for others. I’m sure, like Smartie and Toirnesol you will find peace and comfort and be able to enjoy your time rather than be tied to medication and hospitals. My thoughts are with you, especially as i believe it was you who started this thread. We are all endebted to you. Sending love and best wishes to all. xx
Just wanted to let you know that I’m still checking in and reading. Mums funeral was yesterday. I managed to get up and give a little speech about my life with her, our latest memories and the final conversations we had. I wanted to tell everyone that she wanted to live on in people’s minds and memories.
I still care and feel for what you are all going through and is why I am still going to check in and read. You are all wonderful and strong, regardless of whether you decide to carry on fighting, or decide to stop putting yourself through the treatment. Both decisions take bravery. Xx
Daisy it was so nice to hear about your Mum’s funeral you certainly are a credit to your Mother she will be looking down on you and will be so proud.
Hi to everyone else I am having trouble with my skin mets one has broke down and is weeping again. I have tried to avoid this happening but I need to go back to my dressings. I don’t think I will be normal ever again in that area.
I started my new chemo yesterday and was amazed I had no pain in the night but spent most of the night awake with stupid things on my mind. I did feel I was going to be sick but the tablet helped that I think it was caused by lack of sleep. Then this morning I woke with a red face which seemed funny as my skin has been so pale of late.
Janice I am thinking about you and hope you are ok I send you my love do keep us informed how you are getting on.
Tournesol you say you have been in the hospice 7 weeks do you get chance to go outside for fresh air. You are in my thoughts too and I send you my love
So are you Smartie you are in my thoughts too my love goes out to you too
Love to all my skinny friends ((((hugs)))) xxx
Marierose, sorry to hear about your skin breaking down…i too have resigned myself to having to live with ulcers, dressings etc for the duration. Still, if i’m living i dont care. I went for reflexology the other day and was talking to my therapist about different things like essential oils and honey , She gave me a sample of something called propilis(???)…which is what bees produce to protect their hives from dirt and bacteria. I have started to use it on one area so i;ll let you know how i get on. She also mentioned frankincense but has to be medical grade as is it taken orally, which i had never heard of. I will look into it and let you know if i get anywhere.
Lotgs of love to you, smartie, tournesol, janice and everyone else on here. xx
Frankincense - not cancer related but my husband suffers from folloculitis of the scalp. I got him this from Holland and Barrett’s (and put in the carrier oil) and it cleared his condition up as well as the antibiotics he was given months previously. I am a microbiologist by the way (I work with bacteria) and I was impressed by how it worked so it is definitely worth a try xx
Hi Stresshead, yes, there is some news around re franknsence taken orally, but so far, ive been unable to rource it…apparently ts good for lots of things? Also have tried to source m*r*jua*a, which we arent alowed to discuss, but join the dots…
i heard these two are available online but am wary in case they arent pure…
These new creams sound interesting do let me know how you go on stresshead I would be interested to see if it works. Frankincence sounds good another one to watch.
I see my MS nurse tomorrow I will see what she says to the weed as MS sufferers use it in spray form so I will let you know Moijan.
Tournesol I hope you are still ok from your visitors yesterday. Smartie and Janice I hope you are also ok and I am sending you all loads of :heart:etc etc etc
To all my other skinny friends Love and (((hugs)))
Hi fornymum
I got your message today and will reply as soon as my little one is asleep. I conversed with many lovely ladies on here - mostly those going through what our mums have been through. I still check in on the forum as i don’t feel like I can let it go just because my mum has now sadly gone.
Hi all - hope you are all doing ok as possible.its been a while since any of you posted on here
Xx
Hi formymum welcome to our lovely thread
I wanted to reply to your post but I have had my chemo treatment today and we have been out for dinner so I did not get chance to read much.
Tell your mum she is living with cancer not dying from it there are a few ladies reaching the age of 70 and still going strong. She must get out and ignore silly remarks they are insensitive to the real issues of cancer.
I went to a wedding reception Saturday and as I have MS and cancer in both legs I have difficulty walking but the sound of the music and lots of old workmates I really felt like dancing so I got up and started to dance having well meaning friends who wanted to help me to walk I asked them to give me chance to do it myself and I danced to 3 different songs I felt great but knew when I had enough. I think the steriods I am having are giving me more life.
My skin mets are strange I have an ulcerated patch on my old ulcerated scar that healed and another tiny met that started to bleed next to it. But I feel some of the mets seem to be shrinking. I hope it isn’t wishfull thinking I would like them all to disappear but there is too many for that.
Daisy I am glad you are still popping in to see us and I hope you are all getting comfort from your memories.
Love to all our skinny friends and (((((hugs))))) xxx