Nearly 4 years in and brain mets. Please help

[LissaNeverKnew]

Lissa again. Yes, the reading is improving slowly. 

Thank you for your very kind comments, Moijan. I get a bundle of inspiration & hope from you ladies. All the trials you’ve been through & you still manage to display an uplifting form of support & ‘living’. Right now, I only have the brain to deal with. Some of you have way more. Can’t be easy. Honestly don’t know how i’d cope. 

Oh for that magic bullet! Will never stop HOPING!

💖💖 xxx

[LissaNeverKnew]

Oh dear Moijan, i’ve missed you. But i’m here now. Thanks for kicking into shape. 

How are you lovely ladies doing?

I’ve been Back forth to the hospital. Had my clips taken out, weehee. Getting stronger by the day but still very weak. Have all these place to do things around the house - photography or write a song... haven’t done either 😕 - but realising I can do one thing a day, that’s usually make lunch, then I’m done. Managed to get out for a few walks, they’re slow but the fresh air is good. Doing my best to stay awake through the day so I can sleep at night. Worked twice. Still feeling optimistic. More stereotactic to come. Don’t know when yet. Still trying to get Mum to slow down. 

How’s everybody coping with sleep? Do we have Christmas trees up yet? Ours going up this week. Are you all ready? Plans - family, travelling? I love Christmas.🎄😊 We’re not doing gifts. Don’t usually. Just my sister, her husband & their kids (haha kids, they’re 23 & 18) will come over. 

Let me know how you all are. 

Much love... 💖💖 xxx

[Moijan]

Lissa......coo ee, how are things going?

Love, Moijan🤗🤗

[Moijan]

Hello Lissa,

we we are all here and rooting for you xx

hope your symptoms improve and that you can,  at least enjoy Christmas with optimism and joy. 

So far, your journey...though arduous and tortuous,  has actually been a success story 🌠🌠🌠🌠

what at an absolute star you are.

sleep well, keep us posted xxx

Moijan🦋💖💖💖

[LissaNeverKnew]

Hi everyone...

Reading is hilarious. 😂

Here goes... I hear sleeping’s a prob. Hope you getting relief with that. 

Moijan, glad treatment is working... fustrsss... (can’t spell). Yes, need that making bulletin. I have hope. PROMISE! Hope no more antiobio needed. 

Thanks Carolyn, promise i’ve give it time. 

Nicky, not sure about recovery. Still have clicks in hair. Been told it be few weeks at least before more stereotactic. Showing off now, hey. 😉

Hope everything else doing well. Babsy, Truffle. 

Think i’ll try sleep now. 

Love 💖💖xxx

[Carolyn52]

Moijan
I ordered a small sample spray for 4.99 on amazon today ..if it works i will get the full size one from boots which is £18 ....
Hugs

[Moijan]

Nicky...went to m+s got the £5 spray, but there was a load of different products...my spray was in a purple bottle...am hoping its going to do the jobx

dont think it's the fulvestrant cos I'd started to be better at sleep. Clarythramycin maybe? I have had two nightmares so far.

Moijanxx

[nicky08]

Hi Moijan

The sleep spray and/or pulse 'stuff' are lovely have a deep sniff of. The lavender scent just comes through so well. Having said that I do have disturbed nights, as I think a lot of us do - and probably more now I'm back on a hormone treatment.  Maybe this is the case with you as well?  Anyway, if I wake in the night and can't get back to sleep I roll some of the pulse point 'stuff' (what is it called??) on my inner wrists, temples, back of the neck and usually (to make sure I'm really getting the senses going a bit) under my nose ha ha.  That way, whichever way I lie I can smell it.  I convince myself it will do the trick and I think it has worked everytime.  However, it could be just because I'm so tired by then!  Never mind, even if it's the placebo effect it's still very relaxing to breathe in.

Nicky x

[Carolyn52]

Just ordered a small sample size online too ..I'm having trouble sleeping ..so will try anything ..if it works will get a full size ...
I have a cupboard of tried and failed things !!
Hugs xx

[Moijan]

Nicky....thank you so much...will be getting. Some today so will feed back..but how do you find it Nicky?

my sleep is pretty sporadic and awful just now.

Mx

[nicky08]

Hi Lissa

Wishing you a good and quick recovery from your op.  There's a lot to deal with so take it easy and listen to your body - as I'm sure you know.  Hugs to all brainy ladies and hope you are doing well.

Nicky

BTW the sleep spray is by 'This Works' and can be bought at John Lewis, M and S (as Moijan has said), Debenhams and online.  I've been using it for years and there's a pulse point roll on as well. Boots are also stocking a small size (as are the others)  - just in time for Christmas stocking fillas!

Nicky x

[Moijan]

Lissa, I'm ok, just came out of hospital from needing it antibios for cellulitis...

finding the xmas rush really stressfulxx

still on fulvestrantinj in the bum! Hoping for a miracle as usualxxx

lots of luv.

M🤗💖💖

[Carolyn52]

Hello Lisa
Just rest and let your body heal and recover. .it's been through a lot of trauma. .but we are all here and sending huge fat hugs to you and hope u feel better soon and can dig in to all the xmas turkey and trimmings xxxx
💗💗💗💗

[LissaNeverKnew]

Thanks Carolyn, Moijan & all. 

How are you all doing? Hope you’re all well. 

Home now. Went well. 👍🏾 Reading skills are awful. Huh? Will fox apparently. Exhausted so will take it slow. 

This is is probably a lot of nonsense, haha.

Humbled. Will contact when I can. Forgive it’s it’s a while. 

Please tell me how you’re all doing. Want to know. 

Thinking of you all. 

💖💖xxx

[Moijan]

Lissa...great news...lotsaluv+

ladies got a tip today. Sleepworks by mands

Spray on pillow

Moijanxx

[Carolyn52]

Sending gentle hugs and thoughts to you .
Xxxx💛💛💛

[LissaNeverKnew]

Thank you bonariesis (please forgive my spelling) & everybody. Out of surgery, eating, went well & will rest soon. Still having trouble sleeping at a decent hour through the night, haha! 🤣

Some head pain but they’re managing it. Feel fortunately. Your support has been boundless... clearly I need to trust more. ALWAYS HOPE! Making no expectations but will take it one day at a time. 

Thank you, thank you, thank you... you ladies are truly powerful! 😍

Boundless love 💖💖 xxx 

[Babsy]

Hi Lisa, all the very best for all that’s coming up xx good to have a creative outlet. I have my art but have hardly any stock left   People collecting just in case limited edition ha ha. 😜🌈👩🏻‍🎨still the 💷is useful. Actually I really enjoy the apprection. 

Hugs and kisses with you x 

[bonariensis]

Hi Lissa, will be thinking about you on Friday and listening to some jazz.

Hugs Bon xx

[LissaNeverKnew]

Thanks Babsy,

And thank you for the link. Very kind of you. 🌹 Will take a look. Am doing my best to stay focused and I’m feeling optimistic (still terrified though). Thank goodness, the MRI found only that one tumour - approx 3cm behind the left ear but close to the surface which means they can operate. The steroids are thumping my digestive system right now and I can‘t speak properly but that’s a small price to pay in these circumstances. Op scheduled for Friday so trying to rest. Will concentrate on my jazz and songwriting while I recover... see what nonsense I can put together, haha! 😂

Will update you when I’m able.

Stay well as can be everyone and keep being lovely as you are. You’re all always in my thoughts. 

Much love 💖💖 xxx

[Babsy]

Hi Lisa

Thats a bummer but at least they’re not hanging around. Have you ever gone on on a site called Inspire? It has got a brilliant info and support on brain mets especially on latest treatments. Also, www.canceractive.com is Chris Wallams is full of useful advice and I fully endorse it. Are there loads of options out there. Good luck, do let us know how you get on. 

[Moijan]

Great you got in touch..we have been looking...sorry about your news..have pm.d youxxx

[LissaNeverKnew]

Me again,

Apologies, I’ve been absent for a while. Struggling with my BP which has finally come down after trying myriad meds. Was looking back to getting on chemo as have been off it for so long. Then my shoulder and arm pain increased a lot and began making me breathless. GP thought it was a problem with a tendon and was sending me for an ultrasound.

Unfortunately, my last PET/CT revealed I have another met on my brain! 😓 Had an MRI to get complete picture of exactly what my brain’s doing. Am still NED from the neck down but the cancer seems to like my brain, grrrrrrr! Disappointment, shock & many, many tears followed. Almost feel angry that I dared to think I was doing so well. Oncologist assures me there are many options so it’s not the worst news. Whatever happens, I’ll be having either more stereotactic or whole brain radiotherapy. Definitely no chemo until after the brain’s been treated. Wasn’t expecting to have further update from onco team until later this week but got a call Friday saying I’ve an appointment with the neurosurgeon TODAY!!! Am to take an overnight bag in case they want me to stay in. Apparently, all will be made clear when I go in. Am glad for their speed of action but apprehensive too.

Anyway, sorry to put a downer on the thread but your stories have been a great source of encouragement. Honestly, I’d much prefer give you ladies uplifting news.

Off to hospital I go. What I’ll find out, nobody knows...

Much love 😘🌹💖🌹😘

Have tried to post this about 4 times without success. Don’t know why. Oh well... 

[LissaNeverKnew]

Lissa again,

Apologies, I’ve been absent for a while. Struggling with my BP which has finally come down after trying myriad meds. Was looking back to getting on chemo as have been off it for so long. Then my shoulder and arm pain increased a lot and began making me breathless. GP thought it was a problem with a tendon and was sending me for an ultrasound.

Unfortunately, my last PET/CT revealed I have another met on my brain! 😓 Had an MRI to get complete picture of exactly what my brain’s doing. Am still NED from the neck down but the cancer seems to like my brain, grrrrrrr! Disappointment, shock & many, many tears followed. Almost feel angry that I dared to think I was doing so well. Oncologist assures me there are many options so it’s not the worst news. Whatever happens, I’ll be having either more stereotactic or whole brain radiotherapy. Definitely no chemo until after the brain’s been treated. Wasn’t expecting to have further update from onco team until later this week but got a call Friday saying I’ve an appointment with the neurosurgeon TODAY!!! Am to take an overnight bag in case they want me to stay in. Apparently, all will be made clear when I go in. Am glad for their speed of action but apprehensive too.

Anyway, sorry to put a downer on the thread but your stories have been a great source of encouragement. Honestly, I’d much prefer give you ladies uplifting news.

Off to hospital I go. What I’ll find out, nobody knows...

Much love 😘🌹💖🌹😘

[LissaNeverKnew]

Hello ladies.

Moijan, thanks for checking on me. How are you doing?

Babsy, love that you’ve booked your cruise, sounds wonderful. Me super jealous too! Sorry about the dehydration. Can the GP suggest anything for you? Must be something they can do without you having to continuously fill your guts with water. Frustrating.

Truffle, glad to hear your vision is improving - even if it’s at the omission of a glass of wine. Also so encouraged that there’s been shrinkage. Wonderful news!

Hope everyone is doing well as can be. Has anybody heard from Marnster? Wishing her well.

You ladies always manage to give me hope.

Lissa 💖💖 xxx

[Babsy]

I had another recent stint in hospital managed to get dehydrated. I still keep getting dehydrated and I want to know why. I’m taking in lots of liquids. Any ideas?  Then from hospital went to hospice - hated it. People lovely but environment yucky. So gonna have to find somewhere else to die (not ready yet). Am I back at home in an adjustable hospital bed and a load of equipment but happier. 

Hope everybody else is keeping well.

barb x

[Moijan]

Hi everyone,?

how is everybody? Lissa, no hear for a while,.... how are you Truffle?  Babsy, any change?

hope everyone is doing ok....love and best wishes,

Moijanxx

[Moijan]

Hello Everyone,

just want to share this news about some advice being given to patients with brain tumours at St Thomas's Hospital It comes from the Cancer Active website and there are loads more articles to explore if you fancy looking.

i think below is well worth checking out. Actually sugar is really bad for ALL  of us cancer patients, but this particular bit of news seems to help people with brain tumours etc...so check it out yourselves.Hugsxx, 

Moijan 🤗💚💚💚

https://www.canceractive.com/cancer-active-page-link.aspx?n=3759

Oncologists at St. Thomas’ Hospital, London currently use ‘The Atkins Diet’ with patients who have brain tumours and are claiming much improved survival times. Oh, you remember the Atkins Diet, surely? It’s the one where you eat no carbs. Meanwhile, research has shown metformin improves the effectiveness of Temozolomide, the brain tumour drug (/cancer-active-page-link.aspx?n=3752); as does berberine in other research studies. The brain is particularly susceptible to glucose – See ‘Gliomas are driven by glycolysis – S. Oudard, E. Boilier et al; Anticancer Research 17; pg. 1903-1911’.

[Moijan]

No, I didn't but will look again.

M

[Babsy]

Believe or not 2018 was totally booked up a few months ago, hence 2019; ridiculous. Gives me something to aim for ha ha. 

Did you see my message about meeting up? 

Barb 

[Moijan]

Hi Babsy, did you mean 2019? I thought you might have meant 2018 as you could be on different mets in a years time? Anyway, it sounds great and I'm really jealous...enjoyxxx

moijan🤢😰😎

[Babsy]

Sorry about you eyesight truffs that’s a bit of a pain. Ooh Er, I didn’t know that about drinking wine. I hardly do but it’s kinda putting me off even that occasional glass. I’ve finally got my pain relief sorted I can’t say what a difference that’s made to my life. I know exactly what I have to do to be “normal” , at last. 

Im still booking holidays. I’ve booked a worldwide cruise trip to Australia from Southampton in january 2019, which then has then having a three - four break to explore NZ and west coast of Australia to pick up a return cruise from Singapore on 18 March. I’m really looking forward to it and I’ve worked it around my seven week transfusion needs. Hubby thinks I’ve just looked but it’s amazing how quickly these things book up oops,I know I will make it and be perfectly ok. Everything crossed m😍🎉💷💷💵🦄

[Moijan]

Truffl...much love to you...you are doing so very well. Hang in there and wait and see if your eyes improvexx

You never know...as the tumours shrink you might get some improvement xx

i recently met a guy who has permanent diplopia (double vision) with ms...he uses an eye patch on the days when it feels worse. You could try that and see.xx

Moijan💚💚💚

[truffle_shuff]

soz bout spelling still got squiffy eye x

[truffle_shuff]

scans goog all ctirers shrunk. wow did not expect thst . and also think i have found reason for bleeding on fragmin, feel right chump, i always have one glass of,  wine at tea timethis makes you bleed for britain, no one told me but my fault, its my bocdy. hope its only me , and i dont drink a lot ,.

keep well xxx 

[Babsy]

Fingers crossed, pain all sorted. Did have radiation to lower rib cage for longer term relief. I got up this morning and felt...normal. Wow was I thrilled funny how priorities really change. We’re on a roll with seliing. First boat then trike so hopefully the next thing will be the house. Then we’re see some living, gawd help you hubby xx 

[Moijan]

Hi Babsy, and truffles, hope things settle for both of you.

Hi there Marnster, how are things going with you. Love to youxx

Moijan🍀🍀🍀

[Babsy]

Hope everything went well truffle shuffles.  I'm on holiday at the mo staying in Sovereign gatehouse in the grounds of Osborn House on Isle of Wight. Vicky invited me down for a long weekend. My dear hubby has realised that he's only brought down one pair of trousers which are now in washing machine!!! Then when they are dry it's shopping time. Always a silver lining. 

Think they've got the pain killer solution under control. Waking up with no pain is a miracle and for joints to work properly so I can walk around is great. I still have NO strength in my arms. Any ideas? 

[truffle_shuff]

hmmmmmm truffle shuffles xxxxx love to all

[truffle_shuff]

I will let you know how my eye treatment goes good luckmarmster xxxxxxxx

[nicky08]

Hi truffle shuff

Great to hear from you and that your head MRI was clear. Hope the next procedure helps with your vision. Sorry I can't help with the bleeding you're experiencing but if you're concerned could you ask for a pelvic CT scan? Obviously your team aren't worried but it could put your mind at rest?

Take care and keep in touch for the support you get on here, only when you feel like it though.

Nicky x

[Carolyn52]

Hello truffle shuffle

Lovely to hear from you ...hope everything works out ok but please keep in touch ..

Sending hugs xxxx

[truffle_shuff]

sorry I have been q bit or a recluse of late. will have to come out of my shell. being a bitof a mardyxxxxlove to all

[truffle_shuff]

now been told fragmin for only 3 months. ok by me xxx

[truffle_shuff]

my wbr was ok too , still cant walk, but feel a lot better, back on chemo , keep well all . oh thre best news MRIhave told me they cac improve my vision for me , I hgo in on 20 oct , only day case cant wait , and to any one else ttith the double vision doc told me if I fhad gone in first week  they would have cured it for me , so ask everyone, it can be done ladies.

keep welldxxx

[truffle_shuff]

i have never liked choc, now in a total addict , helt.hope it stops sood, can anyone help ive hadUTIfor weeks , but what is worrying me is the blood loss that is going withnit, no one seemss bothererd, at the doc , at the hospital everywhere. its bright red in the morning , then vclears up . avy asvice would be welcome,

 keep well aall , oh my head mri es clear yesterday , come on capcitabine xxx

[Babsy]

Funnily enough my blood pressure has normalised. I have it taken once a week so I've come off my blood pressure medication, as it wasn't serving any useful,purpose. Didn't get to conference 😟The hospice had changed my pain meds to morphine (druggy now) but the dose was completely wrong so I collapsed in agony on Friday and my hubby had to call emergency ambulance. Didn't get taken into hospital, no point, but did have  contact with a different palliative nurse at the hospice who advised me to go back onto co- codemal as they worked. At least last time when I had that kind of pain I produced a baby!!! Also I'm starting to get into a better routine as we are mainly living down the caravan. Taking a tiny bit of a certain magic ingredient that has had a brilliant effect on the pain, appetite and energy levels. Only three days in, so it's true what they say. Thoroughly recommend. 

With the conference I will get written transcripts and electronic versions though not quite the same as being there. I will share the best stuff when they come through. 

Im not particularly bothered now about treatment stopping as you said Moijan I've done it once before so it's possible again. 

Sorry to hear all of the people struggling, sending you hugs and kisses xxx 

[Moijan]

Babsy -what a shock for you, I'm sorry to hear that. Perhaps some alternative medicine treatment might help? I know you do dip into that field - hopefully xx

Nicky -interesting about the bp - mine has been far too low at times since becoming a spongebob - can I ask you - have you ever had a Whole Body MRI ? It's an extra supadupa MRI which uses 'bells and whistles' to produce 3D pictures - my fear is it will throw up a long shopping list of things to investigate!

Are you going on the Fulvestrant ? Anyway lovely to hear from u xx
M

[LissaNeverKnew]

Hello Babsy.

I’m also saddened to hear this news from your oncologist. How are you feeling after the conference with Anita Moorjani & other speakers? Please let us know how you’re doing. Am keeping hope & thinking of you lots! 💖

Nicky, thank you so much. Will be seeing the cardiologist soon. Looks like I’ll be on BP meds permanently from now on too. Small price to pay, I really have nothing to complain about. 

Peace & much love to everyone. 💖💖😘

[nicky08]

Hi Babsy, sorry to hear what your oncologist has said and I hope you have come back from the weekend conference being inspired and buoyed up by the speakers. Let us know how you get on and if you're finding anything of special benefit for yourself.

Lissa, hope the BP comes down. I am on permanent BP meds and have been for about 4 years now since being referred to the cardio oncology unit at The Bromoton hospital in London. They are complete experts in the effects of cancer treatments on the heart, including BP etc, and I definitely wouldn't be here today if it wasn't for them. Many of the common BP medications can be used alongside chemotherapy and other cancer treatments and quite a few of those actually protect the heart from damage as well as doing their 'proper' job of bringing BP down etc.

Truffle, sorry to hear about the blood clots, they are associated with quite a few of the treatments we have to have. Although you are on the blood thinning injections I found you do get used to having them. There are alternatives, such as tablets, but at least for a while they will keep you on the injections whilst the clots disperse and they monitor them.

Hi to all other brainy ladies, hoping treatments are all going in the right direction and you are recovering well if you've recently had more invasive treatment.

Nicky x