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Bone mets - please join in

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Re: Bone mets - please join in

Thanks for the update on Helen - sure she realises how much love and support are being sent to her.
I find it hard to make the most of each day and to be grateful that there are lots of treatment options available as,like everyone else, I want to live well into old age instead of being satisfied that treatment can give me extra years. I want much more than extra time with my family but don't wish to sound ungrateful or pessimistic but hey ho that's what this disease is doing to me.
LD x
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Thanks chocolates for the update on helen. Im sure she knows how much we're all thinking of her and wishing her well but sending more hugs her way 💖

Lynn...like you I get anxious and worry a lot about the future even tho we're told to live for today and enjoy each day we have. Can't help but wonder how long that will be!
I have counselling now...but with a Senior Clinical Psychologist based at my hospital. Much better than ordinary counseling...didnt benefit at all from that. This is completely different and she's amazing. I'm sure it will do me the world of good and see things more positively. She doesnt gloss over things or make things sound pretty but just explains things rationally. Ive had 2 sessions so far...another in 2 weeks.
Its hard to stay positive but chatting to you all on here certainly helps...especially with such inspiring stories. Love and luck to you all xxx
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Thanks again Chocs. X
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Hi everyone, quick post to let you know that Helen is feeling a bit better again today. She has managed to get downstairs - so let's hope she is really on the mend now. She hasn't sought medical advice - I'll leave that to you ladies to persuade her when she comes back on. Hope everyone is doing ok.

Huge hugs,
Hxxx
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Hello Ruth
I think that I know exactly how you feel. I was diagnosed Oct 2012 with primary and then five weeks later with mets in bones and also -'shadows-' in peritoneal area, which they told me was PROBABLY cancer.
I was put on Letrozole, zometa and adcal and have remained on those since. According to my scans i have no progression and some resolution in my bones and on my last scsn result was told that the -'shadows'- in the peritoneal area are no longer showing.
I have the usual joint pain and weight gain SEs associated with hormonal treatments..but not as badly as some people do.
I know that I am very lucky, and I am very grateful. I have a briliant husband and a good family and I Count my blessings.
And yet -like you -i worry as time goes by. I am not a good sleeper and I have a lot of 'what if' moments ... .. Friends and family tell me that I have been very lucky..not with Dx but with after care and of course I have .. but sometimes i do think that my 'luck' must be running out....and yet along with that I know that there are more treatments available....
I would say that my worst side effect has been anxiety.

Mowser i agree with everything you say in your reply to Ruth...and it is very well put and very sensitive and reassuring.

Sorry for going on...I know that a lot of you are struggling much more thsn I am.......and I appreciate every bit of support that I have recd on these forums.....i believe that you ladies can empathise more than my family and friends....even though I do not doubt for one minute how much they care about me.
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Good afternoon everyone, my Paclitaxel kicked in on Sunday so just resurfacing, hmm joint pains!
Hope everyone is having a peaceful Monday, are you feeling any better Helen? Nice to see you Mavis. :-)
Stay warm everyone. X
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Hi Nanofthree I'm on blood pressure tablets have been for years (it runs in my family) no side effects from tablets. It will be better to take them then you don't have to worry about blood pressure and your heart. Hope this helps. Janet x
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Mowser, thank you so much for your kind words. I have always been a glass half empty sort of person, but you are so right. I need to get on with life and not worry about what has hasn't happened yet. I have decided to book in for some counselling. I had some at the beginning when I was first diagnosed and it was good. Thanks again. Love ruth x
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Hi to all of you.

I'm trying to catch up with the forum. Since my chemo last Tues I have been so tired and I feel that my HB has dropped again. Have had inj for low white cell count. Have also got mouth ulcers. Thank goodness I don't have chemo this week. Hope I feel more normal!

I notice a lot of us are suffering at the moment. Helen, I hope you get that pain sorted tomorrow. You can't go on like you are.Mouser I hope you get a proper sleep pattern. I have been throughout that and it is awful being awake when everyone else is sleeping. At the moment I can sleep for England!

Natalie, I really hope all your results are good. Like me though you are at a good hospital should you have any problems.

Desi, my oh doesn't go out and get nasty but he has a quick temper and forgets sometimes that I am ill and it's very upsetting when you are feeling low to start with. As for dogs, our two are spoiled rotten! OH took them on the moors in the snow this morning. The young one loves it!

Chocolates, hope you doing OK too. Thinking about you.

Good luck with treatment everybody.

Love Sheila xx

 

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Hi everyone, all well here, doing well on Cape am on my week off,am suffering the opposite of "trots" this time though.Helen so sorry you are in Pain,I do hope that soon subsides.Mowser I have had insomnia for many years and finally did a CBT programme online called Sleepio, Boots sell the 3 month version or you can purchase the course monthly online and can try a free trial, the forum members are very helpful.Since my secondary diagnosis,I have found it more difficult to put into practice the advice given on the Sleepio course, my mind is playing many more tricks and the pain from my "foot syndrome" doesnt help.Hope you have all had a lovely Sunday,very cold and icy here in Merseyside.Love and Light xxMavis

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Hi Nanofthree,

 

It is perfectly normal to worry about things progressing-you have been doing brilliantly so far, and the fact that Capecitebine has worked as long as it has, I think is a very good sign that what you have is a slow growing, unaggressive form of the disease that responds really well to chemo! 

 

So you could carry on this for years yet!!! Even if, at some point you find that it has progressed, you do not need to be overly concerned, because even if it does,there are lots (and I mean lots) of alternative treatments to switch to, that can be just as effective as Capecitebine!!

 

So you keep doing what you are doing-try to put it to the back of your mind and carry on enjoying life-you are doing everything you can and as long as you are being regularly monitored you have many, many happy years ahead of you, I am sure of it!

 

Re blood pressure tablets, my OH has a large dose, as he suffered a massive heart attack last year, so is on all manner of different drugs including those to control cholesterol, and blood pressure and he is absolutely fine-no side effects. Blood pressure tablets are very effective, and safe! 

 

Have a great Sunday with your family!

 

Love Mowser xxxxx

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Mowser, so pleased you had a better nights sleep. Let's hope it's the same again tonight!!! Lovely you've booked a break - weather should be a bit better then.

J - I hope yur back improves - always such a worry when we get a niggle - you're right our minds are our own worst enemies.
Desi - so sorry about yur oh - they are so difficult aren't they - I know exactly what yu mean. Just hope things are a bit better today. You just don't need this on top of everything else.

Nanofthree - can't really help you as only just over the year mark with sbc but perhaps some counselling would work for you. Someone who you could talk through all these worries and then leave them there for the week and relax a bit inbetween. I'm thinking of you xxx

Quick update on Helen - she can stand today but still struggling so tucked up in bed hoping for further improvement tomorrow. I've hinted heavily that she should still seek medical advice tomorrow. She sends all her love to you wonderful ladies and is very grateful for your concern.

Have a good rest of the day.

Huge hugs,
Hxxx
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Hi all,

 

Had a MUCH better nights sleep, thanks everyone.

 

Way too cold to go outside today! Dogs would if we would!

 

Ellie on a health kick this month, so making her own Tomato and Basil soup as we speak....The OH has all the vegetables prepared for Sunday Roast Chicken dinner, (he makes the BEST roast dinner in the world) I have just booked a weeks holiday for us, dog walking in Pembrokeshire for early March.

 

Taken pain relief for my liver and back. May treat myself to a glass of wine with lunch-used to be such a party animal but am a lightweight now!!

 

Quiet day for us today-staying in from the cold. Helen I do hope you are feeling better and that your back pain has eased. Hope everyone else is doing OK with their Sundays...

 

 

Take care all,

 

Hugs Mowser xxxx

 

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Good afternoon everyone
Hope the non sleepers can rest this afternoon and have a better sleep tonight.
Desi, hope your OH has started to make it up to you and you're feeling a bit happier.
Natalie (going to be strange calling you this!!) I'm hoping you get some relief for your back pain but we all know what it's like when our imagination runs riot.
Helen, been thinking about you and hoping you've got something to help with your back pain.
Keep warm ladies and only go out if you really have to!
LD x
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Can someone please give me some advice? I have had mets in the bone for six years now, and have been on capecitabine for the past three years. All ok so far but I am finding that the more time that passes, the more worried I get. I know there are some of you who have had mets for longer than six years. Am I the only one who worries more as time goes by? I feel as though my luck will run out soon and then my mind goes into overdrive. Went for a checkup last Friday and my BP was sky high. The hospital now want me to go onto blood pressure tablets. Anyone else on these? Any side effects? Love Ruth x
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Hi Desi-2, aww sorry you had rubbish evening with your oh....MEN!!! I hope he makes it up to you today.
Helen, hope you are feeling better today, been thinking of you.
My back still not great and feeling very tired today, get CT scan and TM results on Thursday...hope it is not going to be bad news, the pain i can cope with its what it does to your imagination i hate!! :-(
Hi to all, hugs J x x
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Morning ladies. Hope everybody is ok today - its lovely and sunny here in South West. Helen, I do hope you managed to get some relief overnight and are feeling better today. Big hugs xx

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Oh Desi-2,

 

That would be upsetting. Dogs are part of the family. Some people are not as good with drink in them, he will probably be sorry about it this morning. Try not to worry about things-you have enough going on. You just take care of you,

 

Lots of love

 

Mowser xxx

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Morning ladies wondering how you are today Helen?
Just going to have a little moan I'm afraid, after a lovely Christmas and calm new year OH went off to his football yesterday (season ticket holder) and unfortunately reverted to type on returning home, new it wouldn't be good as he was later than usual and as expected staggered in, real nasty mood on him lots of swearing and mumbling under his breath about shouldnt have bothered coming back, but what really upset me was that he was even mean to our dog. Not physically just ignoring her but when she been sat waiting for him to return for several hours he knew that would upset me. She's devoted to him and it does plague my thoughts as to whether he will treat her right and not neglect her when I'm not here. I'm sorry if that offends people with children it must seem quite trivial but can't help it😞
Xxx
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Ive been up since 4am too... its the prednisolone. But small price to pay to be able to breathe so much easier! Had a nice cuppa but feel a bit peckish now so time to pop some crumpets in the toaster i think.
Hope youve managed to drop off Lynn and
Mowser....hope you're far away in the land of nod too!
A very early good morning roll call to everyone else! 😉 xxxxx
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Hi everyone.....as you can see unable to sleep...but a lot of us have the problem don't we?
Sometimes resort to zopiclone but too near to morning now....hopefully will drop off soon for a couple of hours...
Just been reading all of todays posts....
Helen .. Hope Your back pain is better .. Like everyone else I think u should be seeing medic..
When I first started reading and posting here I got lots of support from reading Lemongrove..so sad...
Hope u are sleeping Mowser...l tend to have 2 or 3 bad nights then a really good one.....hope the good one happens Sunday night (now tonight) since I am looking after my adorable and very energetic granddaughter for the day.
Having read all of todays posts. (Sorry now yesterdays aren't they). Can see how busy it has been.....so sending love, kind thoughts and hugs to everyone.....l.
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Yes thanks, can go to bed now...Please God let me sleep tonight....

 

See all you lovely ladies tomorrow ...sleep well Helen xx

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Thanks for the update Chocs. X
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Helen is usually an early to bed girl. I heard from her earlier and the pain meds were making things a little more comfortable. She has promised me that if no better tomorrow she will get medical advice.

J, hope your back settles too. What are we all like?!!!!

Had a lovely evening with my daughter. The only pain I'm currently suffering is from my purse!!!!

Huge hugs,
Mowser hope you have a better night.

Hi faraway, Sheila and Mavis - thinking of you all.

xxxx

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Hoping you're feeling ok.
Big gentle hugs, LD x
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Hi Helen hope you are ok xx
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I sent a message has been seen but no reply as yet x

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Ditto....BCC girls to Helen, BCC girls to Helen, is anyone there? Come in Helen!  <3

 

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Helen, hope you are ok lovely. X
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Helen ive just come on to reiterate what everyone else has said. You really must get to the bottom of this pain.
Mowser...hope you get some sleep whatever it takes! Read all the other posts and sending love to everyone. Xxxx
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You tell her natalie 1!

 

Helen, we are on the (your) case now..Hope you have managed to get a medical opinion and some support with this today...

 

Mowser xx

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Helen, i am with everyone else, if you haven't already you really need to get in touch with the hospital even if it is just for advice....i think i must be coming out in sympathy for you, we had to cut a shopping trip short as my back has given me a lot of pain today :-( so get it sorted or it is the naughty step for you madam!!!!
hugs J x x x
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Sorry to hear you are suffering so much Helen, I hope you've been able to get some advice from a professional and something positive is bring done for you. Sending gentle hugs.
Bev, glad that you have some help regarding the breathlessness and that things improve soon.
Belinda, I hope everything went well yesterday and you feel OK after the chemo. I had a port fitted under local anaesthetic about 2 weeks before I started chemo and it's been such a relief. I just get 'plugged in' straight away in the chemo ward, no delays, no hunt the vein. Unfortunately I couldn't have a power port fitted otherwise I'd have asked for one, they just don't use them at the hospital I went to, so I still have to have dye injected into my arm for scans etc but now this isn't being used on a regular basis my vein doesn't cause any problems. My port is in my chest, a bit prominent for my liking but I just have to make sure my clothing hides it and it's where the surgeon recommended it went as there have been less issues with these ones that he's fitted.
Porkie, sorry to hear of the changes that have been picked up on the scan.Good luck with your treatment and hope it relieves the bloating.
Mowser, hope you get a good nights sleep. I get the occasional sleepless night, normally once a week it seems and definitely had this more often when on Cape. I don't have any words of wisdom I'm afraid I just hope things improve for you.
I was very sad to hear about Lesley/Lemongrove. She was a very active member of the forum and gave invaluable advice about treatments for brain mets. A very strong lady who will be sadly missed.
Apologies to anyone who I have missed out, it's been a very active thread recently, and I hope all those starting new treatments gets the results they want as well as all those on current treatments.
Nicky x

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Hello, Helen. I'm with everyone else on this - you really need to contact the hospital now. You shouldn't have to suffer pain like that! You haven't posted since this morning so I hope it means you are getting the help you need. Please don't suffer in silence! As the others say, if it was someone else, you would be giving them this same advice. Don't mean to stress you out here. I know you must do what you feel is right. Thinking of you. Love and hugs, Barton.x

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Yes I have come here again 'cos I'm a bit worried Helen. Don't wish to frighten you but spinal cord compression can give you weak legs, a huge onset of pain and you don't always lose your bladder control. Of course, I hope, it's not that at all but something or nothing. But maybe you can have it ruled out quite quickly at the hospital. I had some simple checks when I developed sudden back pain late December just gone. X
Thank you for that info Lemon D, really helpful. X
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Helen, I am with Chocolates on this one. I don't know if you have ever had this type of back pain before, where you feel unable to support your weight, it sounds scary and painful and debilitating and you cannot just leave yourself high on pain relief for the weekend with no other support or a medical person to have a look at you.

 

You are so good at giving brilliant advice and support to others on here, this does seem like it would benefit from a medical opinion before Monday! At least then you will know what it is, that you are treating it in the best possible way, and you can get yourself better sooner. Please, please take care, and do call an emergency doctor for this-they will not blink about sending someone out to see you-and you are not wasting anyone's time..

 

Take care, I hope you get pain relief soon, please please call someone or get someone else to call someone for you.  Smiley Happy xxxxx <3

 

 

Julie, I am thinking of you today-I didnt know Lesley, but by all accounts she was a wonderful strong woman with a lot of family and friends who loved her dearly, including you. Love and hugs to you.


 

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Porkie - sorry I missed your earlier post. Sorry to hear the results from your scans. What's next - I really hope you get your new treatment plan soon and they get everything under control again quickly. There certainly isn't a dull moment with this disease is there.
Belinda - I have a power port in my arm - it works really well. It also does ct scans etc. would totally recommend. I'm terrified of all procedures but it's actually ok to have. The worst bit for me was finding a vein to start everything off. The port has been great - I would go for it.
Helen, I'm very worried now - I really think you should be phoning the hospital. If one of us was posting about our back you would be saying phone the hospital - so please, please phone them and tell them exactly what yu are experiencing. They are the experts - let them make the decision as to what you should do. Also, I'm going to be worrying about you all day and that's not fair on me or the other ladies. So PHONE now. Xxxxx
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Good morning everyone
Just typed a long post and somehow it's disappeared grrr.
Bev, I'm glad you now know what's causing all your breathlessness and hope your breathing eases quickly.
Helen, your back pain sounds awful. It's typical that it happens at the weekend, but even so someone needs to help you. If your hospital can't help and your legs can't hold you up to go anywhere, you need to get an emergency doctor out to you.
Mowser, I could have joined you and Belinda for a drink in the middle of the night!.
Julie, thinking of you on this sad day.
Belinda, I've not got a port but have a pickman line and although I was terrified about the procedure I sailed through it with the help of sedation. I'd definitely recommend that you get a port especially as it will be used so often and the thought of finding veins weekly makes me shudder!
Keep warm everyone
LD x
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Mowser hope you managed to get some sleep eventually there,s nothing worse than lying ther not being able to sleep,but sounds like you are well prepared .
Helen hope your back gets better as the day goes on if it doesn't you really need to ring your hospital ,take cared
Hope everyone is doing ok ,we had a little bit of snow last night so no doubt when I go shopping it will be busy as people panic buy as soon as they see a little bit of it.
Take care all
Kaye xxx
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Thanks for all the info Jackie! That's really helpful. X
Helen, I'm a bit worried you said your legs are buckling and the pain is very bad. Do the hospital know about your legs? Why do these things always happen at the weekends. X
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Helen, I feel for you. I do hope the pain eases a little as the day goes on and you manage to get some relief. If it continues I woild be contacting hospital again because they should check you over if you are in that much pain. Take care,Jackie x

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Hi Belinda - good to hear that first chemo went well - lets hope it continues that way. I had a port fitted in my arm before chemo last year. I pushed for one because I hate needles and it has been the best thing I did. My only downside is that because I have lymphodeama in my other arm it is difficult to have blood pressure taken as not all health care prof seem to want to take on leg. Also my port does not take the dye for scans so again have problems finding access for this so my advice woild be to try and get a power port fitted as these can take the dyes. I was terrified about the actual procedure but it was done under local and I didnt feel any pain. My understanding is that once done it can be used for chemo straight away so perhaps if it was possible to have fitted on week off when bloods at their best this woild limit infection risk. Good luck in your decision. Jackie x

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I get zoplicone prescribed 3.75 mg get me off to sleep and wear ear plugs asked for them when in hospital last year and now on repeat you can get Sleep eaze from boots these ones are antihistamine where mine arent xxx

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Thanks chocolate xxx I had to laugh at getting addicted to sleeping pills,if only!!!
I have diazepam for spasms. I've been told I can only have a few as they are addictive too. God really I wish I had time to get addicted to them grrrr. I've had the mST,oromorph,diazepam,paracelemol ,ibuprofen and still in agony . On top of cap and anti sickness so I'm slightly high and in pain .i can't get out of bed as legs just buckle and can't hold me up. Hopefully will be better tomorrow. Xxxx
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Trying to catch up here, so much has happened,
Porkie, I am sorry to read you have had some spread, hope the Tamoxifen can hold things stable and give you a longer chemo break. X
Bev, hope the asthma can now be taken care of nicely, now you finally know, have some answers. X
Mowser, you sound a well prepared person for your sleepless nights. I could have joined you for a lime drink, 2-4am. :-) X
Natalie I used to take Amitriptyline, hope it helps. X
Helen, hope the back pain eases up over the weekend. Good old wheely chair. Can't believe the Peach Pills Saga. X
Thinking of Lemongrove, her family and you today Julie. X
A few flurries of snowflakes here, nothing much, the first of the year. Feeling ok, my first Paclitaxel yesterday, went ok. I should have had a port fitted a couple of years ago, was in hospital, waiting, but got knocked back because of emergencies and decided to go home rather than be admitted that night as only had two chemo sessions to complete. However been advised to push for port again, anyone with one, did you have it fitted mid chemo? I'm bit worried of infection risk? I'm on weekly chemo, three weeks on, one week off. A local anaesthetic and straightforward? Thanks. X
Have a peaceful weekend all. X
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Morning ladies,

Mowser, I really hope you managed some sleep. At times I find it difficult - I now just accept it and lie there with my eyes shut. Sometimes for hours but I try not to fret about not sleeping - if you know what I mean. Eventually I do drop off but feel awful the next day. My dr took Helen's view - only gave me a few tablets because they are addictive!!! Is there another bed yu can sleep in away from yur husband - I only ask because I found myself getting very irritated with my oh snoring, and not in a relaxed mood to sleep. Huge hugs xxx
Helen, I didn't realise you'd switched to the sister hospital of faulty towers. What an earth is going on? So sorry you had all that mix up over yur tablets. Now yu have a really bad back. I've struggled with back pain since being a teenager and know exactly how you feel. My advice is to max out on all painkillers and then get up. However difficult and painful it sounds you need to get up and about. My gp presribes me a muscle relaxant for at night to stop the spasms - I think it begins with d. However I am assuming that you have back spasms - if you really can't get up after all painkillers you will need to go to hospital to get checked. Easier said than done. When I phoned they presribed over the phone, husband collected prescription and what a relief. Anyway please look after yourself and don't suffer - huge gentle hugs sent to you.
Bev, pleased that they have finally presribed some meds that will make you fell better - fingers crossed they work quickly and effectively and your breathing really improves..
Hope everyone else is doing ok - wrap up warm - it's cold this weekend - and if you have snow I'm very jealous - don't think they'll be any here in the south.

Huge hugs everyone xxxx
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Thanks ladies,xxxxxx no I don't have BCN or mac nurse. We managed to get me on wheeled computer chair and wheel me to bathroom absolute agony but at least my bladder is empty. Better not drink rest of day as I don't think I can do that again! I'll just put a straw in oromorph an sip that. Lucy in the sky with diamonds .......... Xxxxxxxx
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Aww Helen, just read your post, hope that pain eases, if your maxed out on tabs maybe a hot water bottle may help take the edge off???? Sorry i know it is not much help but it may just do something.
Sending you a huge hug J x x
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Morning ladies, very cold here in the northwest and the snow has just started to fall.
Julie, so sad here of your friend Lemongrove, my heart and tears goes out to her family.
Mowser, hope you managed to finally drop off to sleep, there is nothing worse than lying there willing yourself to go to sleep, i have finally given in to myGPs advice and i now have just half of the amitriptyline 10mg tabs she prescribed, i dont have one every night just when i feel i need one, and they dont leave me feeling groggy.
Hi to everyone else, hope you are all ok and have a good wkend.
Hugs J x x x
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Helen that sounds awful and can't believe the hospital are so unhelpful. Do you have a macmillan nurse from your nearest hospice? Xx