Truffle, what did they say today? Xxx
hopefully it was reassuring?
ladies…was going to mwntion this book…some people like it…some dont…but the lady who wrote it ‘the Cancer Whisperer’ she was diagnosed with 27 mets in her brain latterly…had cybeknife and there was some improvement! i would nip into Waterstones and sit and read it, rather than buy it, as then you can decide if its for you…or not.
Best wishes.
Moijan???
Good morning ladies,
i have been reading back over some of your comments with inspiration.
i was diagnosed with TNBC in 2013, last year it returned in my lung, liver, spine & sternum. I’ve recently completed a early phase clinical trial in Oxford which has had a great response with an overall reduction of about 70%. I had to come off the trial after 10 cycles of chemo as I was having blood & platelet transfusions on a regular basis & they thought it would be good to give my body a rest.
but on Friday 19th may, at work, I had a seizure, although I wasn’t what it was at the time. Cutting a long story short, a CT scan found 2 lesions in my brain. Had MRI on Monday so onc could be sure this was all they were dealing with and for a plan to be set in place. Onc called with results yesterday, and there are a few smaller of the buggers too (onc reassured me they are small pin heads). Looks like it’s whole head radiotherapy to make sure they get them all! Waiting for a planning meeting with onc & neuro team.
In 2013 a similar forum was a lifeline & im still in contact and meet up twice a year with a number of the ladies who went through the same journey. Being able to write at 4 in the morning when you can’t sleep or to just talk to someone when you don’t want to worry your family is a real help.
the worst thing for me is not being able to drive. I am so independent and now have to rely on lifts to and from work, or just to pop to the shops! I’m married, 20yrs this year, but no children. We have a massive holiday booked for September to celebrate but it’s 17 days with 10 in the middle of Kruger national park which makes me slightly nervous (plus I need to check insurance will still cover me). And that’s another mind field.
I’m still getting to grips with it all. Need to get some things in order, sell car being a first! Does anyone have any advise on dealing with life insurance, I don’t have critical cover but how does this diagnosis change things? Should I contact them…will they pay off the mortgage?
So so many questions, would anyone recommend an organisation that can help?
i look forward to sharing your journeys with you & hope I can offer some support to you over time xxx
Hi Peachy
So glad you found us and good to hear that people read these threads silently( even if they don’t always post)
First… re all insurance matters and especially re travel ins, ring Macmillan … they are so good at helping… I rang them recently about a matter and they do have experts on hand to help free of charge.
Secondly, want to say that although I haven’t brain mets( as far as I know!) I really do understand how difficult it is to deal with this illness when you have them!
We a use our brain to cope and then to have a met there … we it’s a shockxx
Am glad you can share with us. There are a few on this thread who have gone through what you are having.
Ask the ones/ neurosurgeons all the questions you have… I have liver and spine mets… I write everything on my iPad and just hand it over to the onc
I do have a friend who recently had
Wbr and so far hasn’t had any s/e but I know she gets steroids… which are obviously essential as the wbr attacks
( fairly mildly) but the brain has to respond by some swelling… which steroids work to reduce. If you read down the thread someone lost temp use of an arm… may have been Marnster? Anyway the steroids reduced the S/e.
As for your holiday, you must choose but maybe, if hubby is supportive … you can still do all of it… but cover is essential as if you were taken ill, ordinary planes could refuse to fly you back… and if you need medevac… to get back…can cost £42,000
As you get a whole plane to yourself with medical staff.
Just a thoughtxxx
Anyway good to see you
Take care, Moijanxx???
Welcome Peachy,
Sorry you have a reason to join us but am glad you found this thread. I understand what it’s like to find out there are brain mets. A similar thing happened to me and it hardly seemed like what I envisioned a seizure to be but apparently it was a mini-one. I had three mets - one approximately 1.5-2cm and two tiny ones. After brain surgery to remove the large met, I had cyberknife and have chemo every three weeks and have responded well albeit I still get infections, anaemia and usual side effects. The large cavity is healing well and the tiny ones aren’t visible. Also met ladies who’ve had WBR and they’ve had similar results. Encouraging to hear you responded well to the trial. Is there a plan for you to restart at some point soon or will you need a longer break? Or does it now depend on when you’ve finished WBR? Apologies for badgering you with questions, realise you’re still awaiting a firm treatment plan.
As for having to surrender your driving license, I agree it’s a massive shock to the system. 28 years of driving myself around (and I’m not the best passenger, haha) came to a sudden halt! I temporarily lost complete use of my arm soon after brain surgery so I suppose I had no choice but to depend on my sister during my recovery as she gave me lifts to hospital appointments, big grocery shops, etc. Shame I can’t take my mother (who I live with) out more though… really miss that. Luckily I live in an area where there is adequate public transport but I still need my sister from time to time. She’s terrific but cannot always be available so I also bought myself a shopping trolley for small grocery shops and it’s very useful. It is definitely a change but I think I’ve finally found my feet… literally! Hoping you can find a way to give yourself back some control and independence.
I’m unable to provide any information re travel insurance. I haven’t been on holiday for years and now I’m a bit scared to so I think it’s wonderful you’ll be celebrating in such a lovely way. Do tell your oncologist how nervous you feel about spending a lengthy time away. MacMillan has already been mentioned and I don’t know of a better organisation to contact.
Please keep us posted. Wishing you all the best.
Take care until… Lissa ?? xxx
Hello Moijan,
Thanks for the suggestion of the book. I usually avoid these sorts of books but I may look into this one.
How are things with you re treatment and how are you feeling? Hope you’re doing well.
Lissa ?? xxx
Hi Truffle,
Any news from the BCN? Hope you’ve got some answers now and can concentrate on your upcoming holiday.
Couldn’t agree more… cancer = chaos!!!
Thinking of you. Massive (((((hugs))))).
Lissa ?? xxx
Hi Moff,
How are things with you and your mother? Hope she’s accepting more help from you now.
Please ensure you get adequate support for yourself. We’re here or you probably prefer another form of support. Whatever you choose, I wouldn’t like to think you’re dealing with this alone.
Thinking of you.
Lissa ??xxx
marnster, am a bit amazed because i sent a very long reply to all of you and its not here!
at the end there was a big bang nearby and I thought ooh, maybe gatwick had been blown up! But actually it was thunder…we then had a handful of hail thrown at us, and thn brilliant sunshine…so, am going to say…it was bit like Melbourne for a moment or two…wish I could be over there ???
Moijanxx
The missing comment… I can’t retrieve… its bit like you singing a song Lissa, every time would be an individual creation Xx
But I do recall saying how very wonderful you all are… you all rise to the occasion when help is needed and this thread is full of lovely stars:star:
Each and every one of you. Am so glad that silent readers feel safe to
Pop up and I think that’s down to you lot and your commitment to helping each other …
and I’m feeling overwhelmed with the love you all demo.
Lissa am not too bad just now, like all of us… up ad down at the prospect of changes and the unknown Xx
Nicky, great to see you here zx like me you are in a ? Transition so we all have stuff in common wether or not we have brain mets x
Truffle hope you are ok?
moijanx
Well done Marnster, I too have scans on Monday -we can compare notes Xx
Love and hugsx
moijanx
I usually post on bone mets and Capecitabine threads but have been reading and following this thread for the last week. I just want to say a big THANKYOU to all who post here because I’m currently waiting to find out what’s happening in my brain after having a suspected TIA . Turns out it wasn’t a stroke but could either be my skull mets pressurising my frontal lobe or a spread of my cancer into the brain. I thought I would go to pieces if ever given a brain spread diagnosis, especially because I have know four people who have died of cancer in the brain, but I didn’t because of the hope that you have offered me on this thread. So once again thanks xxx
What incredible pictures marnster …
Much love to you all you amazing girlies 
…
you are never far from my mind …xc
Hi Marnster and Moijan,
Best of luck with your scans on Monday. Praying for good results.
Great photos Marnster!
Lissa ?? xxx
Hello Babsy,
Very glad you came to this thread. It’s been a most useful for me. All the best for your results, hope you get some clarity.
Much love to everyone.
Lissa ??? xxx
How annoying just typed a long message then it disappeared!!! Been diagnosed with cancer cells in the leptomeningeal lining of the brain which is putting pressure on the frontal lobe section, hence the stroke like symptoms. Apparantly rare, only between 2-5% of all patients get this. I’m really fed up with keeping being in the minority groups, give me a break! Prognosis is fairly poor but some people manage to live much longer with it. Here’s hoping that I’m part of that minority group for once. Oconolgist intially suggested WBR, until the MRI scan showed that there were no other brain mets. She consulted with some other specialists who suggested taking a more softly, softly approach and she’s going to let me do one more cycle of Cape, do a full body CT scan to check out other parts of body. She says she also has one more chemo up her sleeve. I’m also going to use some of the " sacred" plant, nothing to lose. Wish me luck. The one good thing is that the family is now more willing to have " those" conversations. Hugs to you all xx
Hi, have some liver progression, but only very very tiny and slow growing so remaining on Eribulin for a few more weeks and then re MRI
To be honest I’m happy just to float for a while …best wishes and very. Eat luck
Mx
Best luck… the predictive text is a bitchx
Hi Truffl, so glad you went xx
re balance,…sometimes the drugs they gve us can do that too. If we are dehydrated it affects our balance.
Wait and see what they say…would be good if you can get self mobile again…sadly this weather, tho a rich source of vtamin D for us, can take a lot of our energy. So pace yourself and drink 8 glasses of water a day.
do let us. Know how things go Truffle, had been missng you.
Moijanxx
Just wanted to share about fans…found two very excellent ones yesterday in Robery Dyas! Have tried them both and they are so good I thought is share… One was a 4 " Usb connection fan…all metal and I found this almost as good as th bigger one and can cart it everywhere! 5.99
190066 The other was A 14" floor fan. 39.99 and its brilliant in my bedroom at night. These made a big difference since yesterday as my house is boiling.
M
Hello truffle shuffle
Well you had a holibob and a break away from hospital for a while.
Loosing mobility and independence is the hardest thing after being very active …
I had a femur pin November 2015 and have to walk with a crutch and limited at distance …after being like a Duracell bunny its quite a hard one to face but hey hoo …hopefully you will get some reassurance at hospital.
Hugs xxx