cancel
Showing results for 
Search instead for 
Did you mean: 

Waiting to die - rant warning!

74 REPLIES 74
Highlighted
Member

Re: Waiting to die - rant warning!

Hi all, 

 

Please see here for news regarding Smartie. 

 

If you are in need of support or would like to talk you can reach us on our helpline at 0808 800 6000. The opening hours are below. 

 

Monday-Friday, 9am-5pm
Late opening Wednesday 9am-7pm
Saturday, 9am-1pm

 

Best wishes, 

Lizzy 

Community Champion

Re: Waiting to die - rant warning!

HI Tournesol, how are things going?

 

lots of love from this endxxx

Moijanx

Community Champion

Re: Waiting to die - rant warning!

Hi Smartie, 

 

how are things? Hopefully you are now a bit more comfortable?

 

love and hugs, Moijanxx

Community Champion

Re: Waiting to die - rant warning!

Hello to Smartie Tournesol

I do hope you are both keeping well. Tournesol are you still reading our posts. Smartie has the eye sight returned.

 

You are both still in our thoughts and I am sending loads and loads of love and ((((((hugs)))))) to you both xxx

Community Champion

Re: Waiting to die - rant warning!

Just to echo what Charys said. You are both often in my thoughts xx
Community Champion

Re: Waiting to die - rant warning!

Hey there Tournesol and Smartie, 

 

still thinking of you both, and hoping life is treating you well as it could, and you are having happiness. 

 

X

Community Champion

Re: Waiting to die - rant warning!

Hi MarleneRose, just read your post on the other thread...sorry to hear youre  not as well as you have been 

but, Yes, I have heard somewhere that Avastin is good for eye mets...maybe that would help Smartie, tho she did decide not to have any more chemo...but eyes are so important to us at any stage, arent they? 

 

I wish you well and do hope things improve a bit for youxx i think you also said you have a cold just now? Hope it clears soon.

 

love and hugs.

 

Moijanxx

Member

Re: Waiting to die - rant warning!

Dear Smartie:  I just signed into this new group when I found it was quite up to date.  I am so sorry for all your bad luck with treatments and diagnosis's.  I am somewhat like you, this is my second cancer Stage 4.  I was good for 14 years and now almost 4 years since recurrence.  I had lots of hormone therapy in the beginning until I was told I needed to start chemotherapy systemic treatment. I was so bummed and started Taxol with Avastin.  Combo was fine until lately with me getting very depressed, sick after treatment with vomitting during and after diaherra, which are side effects of the treatment. You see, and probably know, the more treatments I have make me less tolerable of the Taxol and Avastin.  It is starting to be too strong and will see doctor on Nov. 7 and see if we go forward with more treatment.  I want to decrease the taxol a little more and keep Avastin.  You see I was diagnosed with tumor in my eye also.  My eye doctor saw it when I went in for new prescription for reading glasses.  Tumors in the eyes really wake up the doctors.  Before I knew it I was sitting with an Oncologist Opathamalogist in Mayo Clinic, Rochester, MN.  I was sent there by my doctors in La Crosse, WI.  Anyway, Dr. at Mayo said, yes there is a growth in the Orbital rim/bone.  He said we could do a biopsy, but could cause damage to the eye.  He said I also could "wait" and see., come back in 3-4 months to see if the tumor shrunk from the Avastin which is one of the drugs in my bag of tricks, or I if it got bigger would have to consider radiation.  I returned in 3 months, that was a couple of weeks ago, and doctor said he had good info, it was like a miracle happened, the growth had shrunk significantly and was no longer a threat at this time.  My doctor could not believe it, my husband was also surprised as he was hoping for no growth, which would be a tie ballgame.  Me, like I said, closet thing to "a miracle", it was like God placed his hand on my eye and has started to heal it.  And I know I pray alot to God and have had lots of luck thru this horrible sickness.  I was thankful for that, but continue to have other side effects.  Bad constipation and vomitting as I build up to getting off Taxol.  Avastin I need as that is the only drug that could have reached the bone blood barrier of the skull to know that eye tumor on its but.  

 

Also sometimes I forget people like you, and forget about all the others of us that continue to take chemotherapy with the hope maybe, just maybe, that new drug is coming shortly to cure all of us.

 

I hope your radiology went good and I hope it will shrink the tumor and help with your sight again.  But you might ask your onocoligist about Avastin to see if it is an options for you.

 

Thinking of you and others like "us" everyday.  God Bless you and your family.  Prayers also.

Community Champion

Re: Waiting to die - rant warning!

Hi Tournesol, you too are in my thoughtsxx how is it going?

 

Moijanxx

Community Champion

Re: Waiting to die - rant warning!

Hi lovely Smartie,

 

you are often in my thoughts. Great to hear from you. I hope you get some improvement from the treatment....im guessing this might be over time, rather than immediate, so dont worry too much if it takes a little while. I was told rads keep working up to two years after. Amazing what they can now do!

 

Smartie, Just to also say, im sure you often feel alone....you are NOT!   We are all with you and im convinced that loving thoughts are very powerfulxxx.. You are getting loads and loads from all of us,so hopefully you have a warm glow inside💖

 

thank you for the feedback re Eribulin and that you had two lots of sessions...were they given 2/3 weeks? Someone said ask for monthly? but  your cancer didnt get resistant to it the first time?

 

you obviously read the threads and keep up with all our goings on which is just great xx

 

I have been a very, very  naughty girl and did 38 in a 30 mph speed limit! So am trying to fit a speed awareness course inbetween onc and chemo, eye unit and heparin clinic appts. ......I think i'll have to get an NHS season ticket!

 

hey ho, find myself actively looking for speed limit signs now in my sleep.

 

lots of love,

 

Moijanxx

Community Champion

Re: Waiting to die - rant warning!

Hiya smartie
You are always in my thoughts too but I do forget to look at this thread some days ..smack my legs !!
Sending every hug from my special hugs cupboard to you.
Xxxxc
Community Champion

Re: Waiting to die - rant warning!

Morning Smartie

Glad your rads are over now I do hope you are not too sore and  I hope they have given back your sight when will you know if they have worked. You have been in my thoughts this week.

 

Sending you lots of ((((((((((hugs))))))))))) and Love  xxx

Member

Re: Waiting to die - rant warning!

Hi All

 

started rads on Monday and got last treatment today. Can't say it has been pleasant at all. Am exhausted & feeling spacey now. Find out what tomorrow brings for me, will let you know, once I've finished, they have said I am going to be exhausted.. Moijan I had two bouts of Eribulin and did OK on them both. Hope you do too.

smartie xx

Member

Re: Waiting to die - rant warning!

Hi Smartie, just wondering how you're doing. Maybe you've posted on another thread, I will look. Hope you're not too knocked out by the rads.

thinking of you

Jacksy xx

Community Champion

Re: Waiting to die - rant warning!

Smartie, how was the first rads? I guess its maybe daily?

 

let us knowxx

love Moijanxx

Community Champion

Re: Waiting to die - rant warning!

Smartie, Hi. Nice to hear from you.

 

sorry you feel so awfulxx And its fine to feel scared, we all would feel the same, but im sure they will help you through it.

 

Liver bloods...I think Marirose has a point because even tho my tumour markers are dropping..my liver function test results have always been pretty awful...my onc give me a print out of my bloods and every time..he says' dont worry about the. Liver results' . So they really arent reliable!

 

like everyone else, am really hoping your radiotherapy gives you some vision imvprovement...I dont think they would offer it unless they felt it would help, so fingers, toes and legs all crossed here!

 

my own vision is not as good as it was...I think its the cancer drugs...the eye unit keeps getting conflicting results...also my last letter to the gp said ' her optic discs look suspicious! Just that, not why or anything...so im thinking..blame the  b chemo!

 

you are in our thoughts all the time Smartie, do keep us posted, how ever you are feelng.

lots of love, and hugs, Moijanxx

Community Champion

Re: Waiting to die - rant warning!

Smartie
So nice to hear from you ...we are all holding hands for you.
Sorry you are having probs but hopefully things will get better for you.
Meanwhile enjoy some nice autumn sunshine .
Carolyn xxc💗💗💗
Community Champion

Re: Waiting to die - rant warning!

Dear Smartie

So sorry you are feeling rough you need your strength for next week. I do hope the rads will give you back some vision in that eye. I can understand you feeling down with everything thats against you. The liver bloods are not always right a ct scan is a much clearer indication as to how the liver mets are going or so my onc told me this week.

I am glad you are able to let out your feelings on this site I think we need to express our thoughts and feelings to poeple who understand and I want you to know we are all here for you to cyber hold your hand and give you big hugs.

 

Tournesol still thinking of you too

 

HeartHeartHeart and (((((hug)))))

Member

Re: Waiting to die - rant warning!

Hi Moijan, thanks for asking about how I'm feeling. Actually feeling pretty rubbish. Gradually got worse over the last week/2 weeks. Abdomen still tight and swollen - am waiting to see if Spironolactone increased dose helps, not enough fluid for a drain. Liver results from blood test this week not too good, all heading in the wrong direction after moving in the right one for a few weeks.

eye still the same,almost no vision now in right one, also have numb forehead on left hand side, a new development.

Feeling lethargic and don't want to do anything. Body generally very stiff and weak. No appetite, trying to force foods down. Feel like I did when I came back from holiday in the summer when I went from bad to worse so it's a bit of deja vu.

Start radiotherapy on Monday (scared) & know I will be exhausted even more.

Sorry for moan but it's good to get it off my chest & share.

I do hope everyone else is doing better.

Sending love to all.

Smartie X 

Community Champion

Re: Waiting to die - rant warning!

Hi Smartie, how is it going?

 

 

hi Tournesol, how are you doing?

 

love and hugs,

 

Moijanxx

Member

Re: Waiting to die - rant warning!

Smartie, only just seen this thread. I would be so worried about the mask, being a bit clastrophobic, so you have done brilliantly. Hope it is all going well.

Tournesol and Jan..always thinking of you too.

Love to all. xx

Community Champion

Re: Waiting to die - rant warning!

Dear Smartie

I am so pleased you got through the making of the mask well done girl so lets hope the rads go ok too. I do hope it will kill that alien in your eye and give you some peace.We will all be with you in spirit Smartie I expect you will be sore for a while after all those blasts. I know what you mean when they run out of the room and leave you on your own with just the machine. But good luck for next week Heart

 

Tournesol are you ok I am thinking off you Heart

 

Love and ((((hugs))))  xxx 

Community Champion

Re: Waiting to die - rant warning!

Smartie
It's good to hear from you but it does sound uncomfy but if it helps you ..it will b worth while.
Sending u loads of hugs xcc
Member

Re: Waiting to die - rant warning!

Well can't say it was a pleasant experience but the rad team were very good and I got through it with the help of a Lorazepam. The mask is quite tight (I guess it has to be) to make sure that they zap you in the same place every time. It's like a cross between a fencing mask and Hannibal Lector!

Starting the treatment a week on Monday and will have 5 sessions over the week. It apparently only takes a few minutes for the actual zapping but then they also have to position you etc. So I will be strapped in for about 10 minutes and left on my own in the room for about 7 minutes for the radioactive bit. That's the bit I don't like the being left on my own strapped down. Perhaps I will practice a bit of meditation beforehand and see if it helps. Almost lost vision totally now in the eye anyhow so it needs something to happen, if it doesn't have any effect on vision hopefully it will shrink the tumour for a period of time at least.

Thanks for everyone's kind thoughts - you are a great support to me.

Smartie X 

Community Champion

Re: Waiting to die - rant warning!

How did it go Smartie? I've seen pictures of the mask thing, it is full of holes isn't it? Its great that they are being proactive with your treatment abd can do something to help with rt. It must be very frightening, I can understand that, I so hope your planning went well.

Member

Re: Waiting to die - rant warning!

Just checking in to see if you had posted an update on your rads planning appt today, Smartie.  Really hoping the rads team were sensitive and gentle with you.

 

Along with Smartie, you are in my thoughts daily Tournesol.  Sending gentle hugs and love xxx

Community Champion

Re: Waiting to die - rant warning!

Hi Smartie

Good luck for tomorrow I do hope you cope ok with that mask I am sure they will help you to feel more comfortable with it. There must be so many who feel scared about wearing one of those I remember my father who had one made he was really nervous but then seemed ok with it.

 

I will be thinking about you tomorrow best wishes sending loads of love and (((((((hugs)))))))  xxx

Community Champion

Re: Waiting to die - rant warning!

Smartie, good luck tomorrow...my thoughts are with you. Lets hope the treatment helps.

 

hugs,

 

Moijanxx

Member

Re: Waiting to die - rant warning!

Hi Smartie. I don't have any experience of the mask fitting, but I just wanted to say I wish you loads of luck for tomorrow xx

Member

Re: Waiting to die - rant warning!

Hi All

 

Saw the radiotherapy team yesterday and they feel they can treat the orbital tumour palliatively. Side effects will be potential short term headaches, extreme tiredness and blurred vision all of which I'm getting anyway so I figured I hopefully would not be any worse off (famous last words). Obviously it's not a cure but it should stop it growing for a period of time (how long no-one knows) so that it doesn't cause any more side effects or damage. My droopy eyelid is likely to remain but if I don't do anything the tumour could push the eye forward out of the socket or grow backwards and impinge upon the brain tissue itself.

I'm nervous about going to the planning session which is tomorrow as they make a mask for the treatment and I'm claustrophobic so really scared about having my head encased and clamped down. Hope I can cope. Then I will have 5 sessions of radiotherapy itself. 

The onclogist looked at my abdomen too and said there isn't enough fluid yet to drain it off and the main part of the discomfort and tightness is due to the swollen liver. My steroid dose will be increased once I start the radiotherapy so hopefully this may assist the liver in reducing a little too.

Feeling under the weather, lethargic and uncomfortable & scared about tomorrow. Wish me luck. If anyone has any experience they want share about the mask fitting I'd be grateful.

 

Hope everyone is as well as can be

Smartie x

Community Champion

Re: Waiting to die - rant warning!

Just wanted to echo what Moijan said. It was just what wanted to say but I'm rubbish at writing things. They always come out wrong.
Anyways you are both in my thoughts every day and I check in to see if you've posted regularly. Lots of love and hugs xxx
Community Champion

Re: Waiting to die - rant warning!

Hi Tournesol and Smartie,

 

was just reflecting....I wonder if you realise how much you mean to us all? 

 

I realise many of the family at bcc have known you both much longer than I, and that you dont really know me, but honestly,, I often find myself thinking about you both, wishing I could just 'pop in' and meet you, have a chat/gentle hug etc.. This forum is a wonderful venue to share help, love and suggestions, but I would love to actually meet people when they are having a tough time... Its harder when you cant see people.

 

anyway, rest assured, you both do mean a lot to us all and are in our thoughtsxx

Moijan 💖

Community Champion

Re: Waiting to die - rant warning!

 
Community Champion

Re: Waiting to die - rant warning!

Hi Tournesol and Smartie

Just popping in to see how you are both doing. I do hope you are both ok.

 

Smartie how did you get on with the radiotherapy people with your eye. It is so hard for you having trouble with your stomach and then to lose your sight in one eye is too much this disease is so cruel.

 

Tournesol are you still in pain or has the Dr been able to help you we have not heard from you for a while.

 

You both are in my thoughts and I send my love and (((((hugs)))))  xxx

Member

Re: Waiting to die - rant warning!

Hi Tournesol - can't imagine what it is like for you - I guess trying to get some peacefulness and comfortable acceptance of how things are.

 

I've recently started a mindfulness course where you spend a minute or 2 meditating and focussing on the here and now, not allowing all the internal chatter of the brain that we constantly do. Sounds whacky to some but I find it very calming and gives me a chance to move away from dark/sad thoughts into a lighter place.

if you have the urge check it out on YouTube, plug some earphones in have a restful time :-)

 

Anyway, thanks for being in touch and wishing you lots of comfort and light.

 

helen xxxxx

Community Champion

Re: Waiting to die - rant warning!

Tournesol, sorry to hear about the pain, yes maybe ask for a scan..will help them to help you.

 

you are in my prayers and thoughtsxxx

 

Moijanxx

Community Champion

Re: Waiting to die - rant warning!

Hi Smartie, good luck with the rads appt, so sorty about the eyesight, what a bugger!

 

am off to cehmo now, but your on my mind and in my prayersxx

 

Moijanxx

Community Champion

Re: Waiting to die - rant warning!

Smartie
We are all glad to hear from you but sorry you have so many problems to cope with.
If the sleeping tablets help ..then take them as you body will b resting and you will not have to count sheep during the night like most of us do !! Bought a sleep mask but the thing keeps moving around and I never know where it will end up !!
Hugs xxxx☺☺☺
Member

Re: Waiting to die - rant warning!

Thank you. Tournesol hope you are doing ok. I am feeling rough, vision almost gone completely in right eye, got appointment at radiotherapy unit on Tuesday to see if anything can be done. Will update you. Abdomen swelling (ascites again I fear) it has been fine for weeks now it's distended and tight, makes me feel like I can't breathe & I'm struggling to eat anything more than a babies portion size. GP has increased diuretic dose to see if that helps.

Not sleeping well either - had sleeping tablet in desperation last night and now feel like a zombie today, still kept waking up in night but did go back to sleep relatively quickly. Don't want to take another one as they make me feel so rough afterwards.

Trying not to feel sorry for myself, I know there are ladies amongst you putting up with far worse without moaning!

Let us know how you are Tournesol.

Smartie X 

Community Champion

Re: Waiting to die - rant warning!

Hello tournesol and smartie
Sending love and huge hugs to you both.
☺☺☺xxx
Community Champion

Re: Waiting to die - rant warning!

Tournesol, 

 

i posted in in exactly the same minute as you! Maybe then you will be given a scan, as you've not had one side July.....seems like a good idea doesn't it? Really sorry you have some pain, that can't be a nice thing to wake up with.

 

X

Community Champion

Re: Waiting to die - rant warning!

Hiyer to both Smartie and Tournesol,

 

I'm thinking of you both too, and hoping you are having happy times with love surrounding you.

 

Charys x

Member

Re: Waiting to die - rant warning!

Thanks Moiijan. Still here but woken up in pain for first time in months. Waiting to see a hospice doctor. But they are unlikely to know what is going on as I have not been scanned since July...

Hope you are OK.

Tournesol x
Community Champion

Re: Waiting to die - rant warning!

Hi Smartie,

 

been thinking of you, how are things?

 

love, Moijanxx

Community Champion

Re: Waiting to die - rant warning!

Hi Tournesol, how are you today?

 

love Moijanxx

Member

Re: Waiting to die - rant warning!

Hi Tournesol
You must have just posted before I posted, I just wanted you to know I'm thinking of you xx
Member

Re: Waiting to die - rant warning!

Hi Tournedol

i would just like to join the others in sending you love and hugs. I hope your doing ok and feeling brighter. 

Love Jools x 

Member

Re: Waiting to die - rant warning!

Thanks all. Have been taken off all treatment now so no need for cards, but thanks for the thoughts.

 

Tournesol xx

Community Champion

Re: Waiting to die - rant warning!

I think Helens idea of your cyber friends here sending a card or something is a good idea ..if u want us to but we need to know the address ?
Xxxx
Community Champion

Re: Waiting to die - rant warning!

Hey Tournesol,

 

glad you came back to see all the thoughts people are sending you on the forum, I know it's not the same as having people right there with you, but if you ever need somewhere to write things we are very happy to listen. 

 

X