Hi All .
Quick post as auntie moijan is a worrier ?
Had chemo today - feel okjust very tired …
We keep fighting on ???
HI Lovely Ladies
how are you all, moijan, lisa, Zena and truffles? xx I know im new here but I do think of you all xx Charys thank you for thinking of me and I agree entirely with you, life is precious to each and everyone of us…cancer is such a stark reminder of what and who we take for granted.
At hospital with mum yesterday, onc has said to go with WBR first and then to think about trial in future, if its still indicated. I am a bit disappointed as I know that this cant be repeated in the future…however you have to put your faith and trust in those that are looking after you that its the right thing. Still the trial is still a possibility. I have read such worrying things about the side effects of WBR but then again its better than nothing. Mum feels better that something is being done, and thats important.
Take Care xxx
Oh, are you swimming?
Whatever… have a good relax xx
Truffle was joking, keep it up , once it works you can relax the water for a little while…
Hugsx
So I have had three stereotactic radiotherapy treatments so far and in the past 48 hours I have significantly lost strength and mobility in my right arm. Am lying here tapping this out on phone with left hand. Is very frustrating.
I had noticed some difference in strength between my left and right arms before starting treatment but nothing that affected my day to day life. Now I can’t use a knife and fork, safely hold a glass or cup, type or text, write, apply make-up and struggling with other things.
Am hoping this is just a temporary thing because
a) the met grew and will be shrunk and then things will go back to normal
b) the radiotherapy has caused some swelling temporarily which has created some pressure that is causing me to lose control of my arm
And not
c) the radiotherapy has caused permanent damage in trying to zap the brain met
Am not seeing my radiation oncologist until Wednesday but will try to get her on the phone tomorrow to let her know what has happened in case we need to reassess treatment.
Anyone have any similar rapid experiences like this?
God that totally sucks marnster ., I’m gutted for you …
I’m be got weakness and pins and needles in my right arm … from lymph nodes and the big tumour… I use cbd oil and not had neuropathy which is common…
I don’t know what to suggest really Hun but I know how rubbish it is to lose strength and be so weak in the arm you need as much as the other really …
For years I’ve compensated due to an injury in my right side ( now cancer side ) and have a hump back and turned I. Shoulder and pain most days … it’s rubbish , chiropractor helped and massage …
Thinking of you and your lopsided typing xxx
See my texts are terrible- proof of my dicky arm lol
How come youve kept your hair moijan ? …, must be all those carrots ???
My goodness you were serious!! I was expecting more funny pics Xx
That’s great moijan -thank you … I will def try those exercise s once I feel better, and the best sounds interesting too - brilliant …
Thank s bunny girl ? ?Xx
Hi everyone,
How are you all doing?
Sorry I’ve been missing but this pneumonia hit me really hard so I’ve been resting (read sleeping lots ???) since I came home from hospital on Monday. Just catching up on the happenings now & will rejoin the thread.
Hope all’s as well as can be. Bear with…
Much love, Lissa ?? xxx
Hi Lissa, sorry you’ve been so very unwell with pneumonia… how awful xx
Nice to hear from you tho.Didnt you mention stereotactic rads? Have you any experience of them? Maybe I’m dreaming things xx
Do take carexx
Zena, yes I was astounded to find that link… was purely accidental as was looking for funny graphics to torture you with…x yes it looks interesting… not tried it tho so can’t say if it works or notxx
Sleep soundly everyone ???
Moijan
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Hi Marnster,
Sorry to hear you’ve had problems with your arm. It’s hard to say if the problems I had were caused in the same way because I had numbness in my right arm (albeit still normal usage) before my brain surgery & then I lost the use of my arm COMPLETELY within days after my brain surgery followed by a multitude of seizures in one day (none since) soon after that. The symptoms certainly sounds similar though. They felt it could be swelling &/or maybe a small blood clot from the surgery that would eventually drain away. Honestly, it was a very low time for me - one minute I could do everything, the next, nothing… I had to carry my right arm around with my left hand but I just ended up buying a sling. I needed help to go to the loo (yikes), to bathe, get dressed, pour a drink, fix a meal, eat a meal, stay physically balanced, all the things you mentioned re the knife & fork, texting, typing, writing, loss of strength, the lot!!! Thank goodness for my mother & my sister. I hadn’t gained much functionality of the arm by the time I had the CyberKnife radiosurgery about a month later so it’s hard to tell what impact it really had. Just like you, all sorts of things went through my mind & they were all negative… thought my brain was totally screwed & that was that. Period! The medics warned me that the CyberKnife could make things worse & that scared the c**p out of me but they were always confident it would be temporary. Possibly that old saying of getting worse to get better, huh? In my case it seems they were right because over time most of the functionality in my arm has been restored. It’s not exactly the same as before - it has its heavy days, it gets tired & for example, the severe anaemia I had last November & the pneumonia I’m recovering from now has taken its toll - but it’s definitely in a much much better place. I’m still learning to monitor its use so as not to overwork it. When I have a good day(s), I forget but then I pay for it with fatigue, haha. Please note that I am typing this post with my right hand. ?
It’s a particularly horrible time for you now but there is definitely hope. Very easy for me to say that now having been through all the worry, adjustment & frustration of wondering what’s going on & eventually seeing things go in the right direction. Of course, every case is different so you’re absolutely right to speak to your radio onco soon as you can. However, I still have & will always have hope that things will improve for you. You’ve been through so much, it’s only natural you feel the way you do.
Please keep us updated. Thinking of you.
Love Lissa ?? xxx
Hi Moijan & Moff. Thanks so much. I am getting better but it is oh so slow. I have no energy whatsoever. They really did look after me in hospital though but, despite that, I think I’ve been sleeping so much since I came home because it’s so difficult to do so while being in there.
Carolyn, Charys & Nicky, very touching posts about your experiences with your family members… your mother, children, having to handle your grief & now your own treatment. I know I keep mentioning the word ‘hope’ but this week in particular I’m holding onto the idea of that magic bullet for all in our situation with my fingernails. Had sad news re my aunt in the States who has succumbed. After all that I’ve been through, all the stories I’ve heard from you & others & knowing her situation, I didn’t think it would actually happen & it’s heartbreaking that still so very little is understood about MBC. Don’t know if I’m angry or what? Maybe it’s a good thing that people don’t need to know, goodness knows I wouldn’t wish this on anybody. Glad I finally came back on here because being in contact with you all has lifted my spirits. ?
Zena, glad chemo still going well & you’re managing to laugh. Truffle, apologies if it wasn’t your intention but I’ve found your ‘battle of the bowel’ episodes rather amusing. I adore the sense of humour on this thread. ?
Hope I haven’t missed anybody. Take care ladies.
Much love, Lissa ?
Oh lissa ,
I’m not as good with words as you and the other totally incredible girls on here , but you are all so dear to me … I know I don’t have the same as you and i only came on this tread all those weeks ago to say how wonderful I thought charlotte and you all were , but I’m can’t leave you know as I’ve grown to think of you all as my friends and I look forward to opening the posts, to see you all . It’s devastating to hear when one of you is down or very sick and I want to come visit wherever you are and bring cake and anything to make it better, but that’s what we get enough off in real life so sometimes I just like the raw truth on here and the kind of sick jokes ?
I know we all have this terrible real fear we share and in that we support each other.
I can’t help any with the treatment support but I’m here anyway and not going anywhere.
Marnster I hope that lissa has eased your worries a bit as it sounds like its temporary , doesn’t stop it being a blasted ball ache though I know xx
Lissa , so glad you feeling better hunny , must have been hell … we get used to medical words and names for the stuff we get but they are so much more than that. When I get struck down with an Se or sick with a bug, I go into a bubble where time or the outside world doesn’t exist, it’s how I cope … then when I come out I forget how bad I was and try to get the new new normal , normal … does that makes sense? I’m glad you better anyway that’s what I was trying to say , don’t forget to rest though like I do and get bad again!!
Moff … thinking of you and your lovely precious mum , it’s so scary what you are going through. Hoping and saying a prayer for you and her today, as it sounds like a positive step, I’m feeling it’s gonna be ok and help her xx
Big love to charys , Nicky and Carolyn too incredible incredible incredible 
Truffle I think I saw you on PIP page yesterday from a while ago - I’m going to my GP today to get the form … enough is enough my Hubby and I are really struggling to pay bills now.
And bunny hope you ok and resting enough you superstar lady … ?Xxx
I’m trying to rest today as aches and nausea back , I did too much at the weekend because I’m so happy to be alive . Me and my son daughter and sister when to make a pot at a pottery place - it was so lovely. But as my husband worked all weekend I had kids and now feel like I’m getting ill … never mind il be ok just need to rest …
Sorry for long post xx
I’ve decided to get more into Facebook now as I bit of a snob about it before but look me up if you can
Zena greene xxx
Lissa,
Great to hear from you and thank you for sharing. Do look after yourself… we aren’t good at that… I keep trying to prove bc makes no difference to my life… every time I overdo it, I then get some sort of bug, so am really trying to nurture myself now xx
Zena, you also seem to be a bit like me… plow into stuff when feeling better, then pay for that later… thank you for the FB invite, I’m not a snob, but have been bitten in the bum a few times so I don’t do FB anymore. I find this forum to be a more genuine place to be, and I feel I can trust the friendships I make here - I don’t feel that way about FB at all. But if it works for you, it’s great, that’s the most important thing really… doing what works for youxx
Well, the weather is truly wonderful this morning … am sure the ducks are ecstatic
Keep warm, dry and well everyone.
Moijanxx
Hi Moff
Just had chemo today . I’m ok just so tired … worried I need to get laxatives right or it will be hospital again … annoyingly I’ve eaten like the hungry caterpillar since I got home . Ridiculous eating feel so bloated now and pAniciced about potty training tomo . Sorry to much info ??
How is your mum Moff ? Has she felt ok after treatment. Silly question really I’m sure but , is she ok ? Xxxx
hope things are ok with everyone, at least the sun is shining.
docs have stopped my chemo as I cant get rid of this UTI, 4 weeks in now, exausted, but whern she said , stopping chemo for a week , the first thing that came to mind was … oh good I can have a curry, its always the simple pleasures we miss isnt it , or is it just me
have a calm and peaceful weekend
xxxx
Excuse me …moijan but I was under deck eating kitkats and avoided the photo shoot all together …ha ha xxxx
Hello Marnster,
So glad to hear from you. Even better to learn your arm is much improved & you’re reducing the steroid dose. That truly is wonderful news & must be a great relief for you. Hoping your MRI results show improvement too… when you eventually have it. Waiting until May means the chemo has time to start doing it’s thing. Sounds like all is going in the right direction. You’re right about the blood transfusions… I’ve had a few since starting chemo.
They showed the storm on the news here. Hope it didn’t affect you at home.
My energy levels are getting better after the pneumonia. The oncologist cancelled last week’s chemo session (second time) to make sure I’d be fit enough. Honestly, I was glad as the pneumonia wiped me out & I wasn’t anywhere near fully recovered. Plus after getting the news about my aunt, I really wasn’t in the mood. I finally had my PET/CT today so will have to make myself super occupied (within reason) until I get the results! ? I also have a week off from hospital appointments & you’ve given me an idea… a massage may just for the trick. ? Maybe some jazz & singing.
Moijan, Truffle, Charys, Carolyn, Zena, bonariensis… how are you all getting on?
Moff, how’re you and your mum doing?
Wishing you all well & sending much love & hugs.
Lissa ???