Great to hear about your scan resuts Esha. Glad the chemo is working for you too. What a relief. Love Val
I think what happened to me recently LG has some similarities with your experience. I had a nerve block back end of nov for the pain in my lower spine and the following day had severe pain start up around the front right of my ribcage which moved round to the back quite quickly and went on day after day. I didnāt rush to make an extra appt. at the hospital because with the degree of damage I have with bone mets I do get pains that come and go. Eventually I had a clinic appt. and had made a note of questions I wanted to ask, including this pain. Before I had a chance to got through them the oncologist said the results of my last 3 MRI scans had been good - they were all stable - just a little problem with T6. This ālittleā problem was a tumour starting to grow again and pushing my spinal cord over to the left! Not little in my mind and had been noted on previous mri scans. I was actually quite cross and told her so. I told her that this pain I had is probably related to that and had I known I would have called to get an earlier appointment rather than suffer. (At least I had written it down - I was afraid she would think I had made it up LOL). I think what I am saying is that what is quite a serious problem to us seems to take longer before they flag it up as āseriousā. I think they donāt keep patients fully informed then we may well do things which we shouldnāt - like you going to your GP and to a physio when perhaps it would have been better for you not to have done. Just as they ask us (or they do at my hospital) ādo you prefer to be called by our first nameā they might ask āare you a patient who wants all the details?ā I suppose they will never win. But I do think they response you have got would have been very similar at the hospital I go to (you know which one that is LOL).
Dawn
xx
Dawn, I hope they managed to get the pain from that tumour sorted out. As you say, what appears a little bit of progression to the medics, can cause a great deal of pain to us. Iāve been mostly flat out since the beginning of December 2011, and had I known about the suspected tumours, my GP, could have given the appropriate treatment, instead of Nurofen and physiotherapy, which unfortunately did nothing for the pain, and made the pain worse in the case of the physio. Fortunately Charing X have organised rads now, and I start for ten days on the 3rd May.
By the way Dawn, weāre having a little get together at my place on the 2nd May. If you can make it please send me a pm for details.
Esha, Iām so pleased your CT was clear. Excellent news indeed.
Tara, Charing Cross did have a nurse specifically for stage 4 patients, but unfortunately, she left, and it seems they have had a problem recruiting a new one - so there is nobody to discuss scans with other than Prof. Charing Cross does have the Maggies centre, and they provide excellent support, but they donāt have access to medical records, so canāt explain specifics.
Many thanks for the invite Lesley - but we have a big function the following day starting quite early. Our new garden the āBonsai Walkā at Wisley is being opened by the President of the RHS. Family will be coming up the day before. Although it is a lovely occasion - it will be exhausting - and I will have to get out the latest fashion accessory!!! my mobility scooter. Unfortunately the colour does not match my outfit. Hope you have a good gathering.
Dawn
xx
Oh wow, sounds fantastic Dawn. Is your Nursery going to be at the Chelsea Flower Show this year? I love the CFS, always come back with dreams of gardens I would never be able to create (due to not enough money or skill).
woohoo, new forum?!! 
A little bit too much to get used to just over a week after a big op. 
Just to let you all know that my op has been a complete success and I was discharged on the 29th. Still recovering slowly, but feeling the benefits already. 
Cancer has been causing trouble though well Iām off chemo 
So canāt wait for a full recovery so that I can start chemo asap.
It might take you a while to find this update, but hope you get it in the end. Thanks for all your support.
M xx
P.S. hope by me posting something on the āfamousā bone mets thread, You can find it a bit easier now.
TESTING TESTING NEW FORUMā¦ still not perfect, but at least we can keep in touch 
So glad op went well and good to hear you sounding brighter.
Am posting in hopes that this will get us onto active posts and we can start catching up again!
LG hope rads went ok today
Dawn tell more about Chelsea!
Love to all my bone mets friends xx
hello all bone mets ladies just testing to see if this posts
hello all bone mets ladies just testing to see if this posts
Hi all 
have been exploring and managed to find my way here. We have had a lovely day at Wisley with the opening of the new āBonsai Walkā and it is looking stunning. When I get round to putting my profile back up I will put the link to our website so you can see some of the things we get up to. Julie & LG - we gave up doing Chelsea about 5 years ago now - we thought we ought to give others a chance LOL as over the 23 years we have been exhibiting we won 21 Gold Medals for our bonsai display. We loved it, but it was hard work and we felt we were just getting too old for it. Bedtime now for the oldies.
Dawn
xx
Just a quick post without much to add, but it seems this is the only way to actually follow a thread nowadays. Post on it and then get the email notification.
Eventually managed to get on site and find thread though still not easy, hopefully they will sort things out properly soon and normality will return!
Dawn the bonsai walk sounds lovely, Iāll make sure I have a look next time Iām at Wisley.
Just trying to keep the thread going in the hopes that it will be easier for others to find.
Have a good weekend all xx
Hi Girls. How I have missed this thread. I wonder if we will ever get back to doing it an easier way. Do we have to do the word notification each time we post? I think this new system is much clunkier and harder to use for us postersā¦especiay us older ones.
OH and I have been slowly getting over a cold type virus. Not so easy when on chemo. No hospital visits for me for 2 weeks. Had hair cut, been to dentist so a free diary for once.
Looking overcast here. Twas a very cold night. Must get out of the house for a while. Must try to find the Gormless page next. Been shopping again. Love to you all. Hope to be in touch with you all soon to see how YOU are doing. Love Val
Hello lassies all
Wanted to say I finally got 10 Lidocaine patches. Going to try out this weekend. How you are all ok. Good to see posting happening again!
Take good care
Tara xx
Hi Tara, I donāt know if you have used Lidocaine patches before but it is very important to wear them only for 12 hours and then remove them for 12 hours. Also do not forget to remove the patch if you go into the shower of bath as I have been told that you can get too much Lidocaine if you bathe wearing one. You can also cut them in half if you want to put them in different plqces (like lower spine and hip/thigh). Remember to re-seal the sachet each time you remove a strip. To remind myself to remove a patch in the morning (or night) I leave out the box in a prominent place(Beside pajamas or pills). I have forgotten to remove them on time occasionally myself. But then you may not be od and dopey like me! I find I need to do things in a certain order these days and if I donāt I can forget to take my pills for example. Good luck with the patches. I have never had any side effect with them so I hope they work well for you too. Let us know how it goes.
Hi Val
re āold & dopeyā - I keep a notepad beside my meds and have to write down the time I take anything because sometimes 5 mins later I just cannot remember if I have taken a pill! I have tried Lidocaine patches but generally they are not a lot of help because the pain is too widespread to be able to isolate an area to put the patch on. Plus my GP really does not seem to be happy prescribing any more expensive drugs. I think I mentioned before, when I handed in the hospital form to request her to prescribe she wrote up for the lidocaine ointment instead of the patches and to apply 3x a day instead of use up to 3 a day!! I gave up.
How do most of you who are on heavy duty meds manage? I struggle to the point of frustration that whenever I sit down, I fall asleep! Itās a sort of āhalf-sleepā, the only way I can describe it! Yesterday evening I managed to tip half a cup of tea over me. That woke me up! I better leave the laptop and go and get showered & dressed before I nod off again and tip the tea over the lappie this time! We have the pleasure of our grandson & his mummy & daddy joining us later on for the rest of the weekend :).
Dawn
xx
Hi Dawn and Val
Thanks for your help and advice re the patches. I tried one last night and it seemed to help. As my main pain is in my sternum I could use a long strip which works well and also means I can use less patchesā¦ Lucky NHS - they will rise or fall on account of my patches Iām sureā¦(Forgive my cynicism, Iām really a fan of the NHS and just hope that it doesnāt get more difficult to get stuff when GPs have to handle all the budgets). My GP has been great in fact. I am really hoping this works for me as the opiates are really out because of my low BP -unless I really need to lie down all day anyway! As if I needed an excuseā¦ I am trying my best to avoid the heavy duty meds that you speak of Dawn, so canāt help there, except to send a big hug, but even worried about that in case it makes you spill your tea again! 
Seriously though it is a good topic as many are in the same situation and as an OT I am all for strategies for coping.
Cyber love and hugs to you all on this thread.
Tara xxx
It is difficult trying to balance things when on pain meds. I find when I am that tired it is usually because I am taking too muchā¦but not always and that is the hard bit to work out! I am feeling like that myself just now Dawn. I went out for a wee whie on Saturday and enjoyed the walk and people watching etc. It was good to get out of the house. But when got back it was right into bed and I was dead beat. Fell asleep for 2 hours. Got up later and when I later went to bed I stil slept al night. I even wake up tired. But I am puting it down to chemo at the moment. Yes the general public have no idea just how much Cancer affects day to day living. They can say we look well but they donāt know the half of it. I so want to do things, I have bought new bread flour and have knitting wool to start something, but all I seem to manage is the laptop or reading a novel. Not much of a life at times. I just wish I wasnāt so tired. Perhaps my bloods are going down again too. Get them done in around 10 days. Love to all, Val
Hi all,
scottishlass - I know what you mean. People look at you like youāve got a screw missing when you say youāre tired especially if you look ok to them. Iām going through chemo just now as well and have developed terrible folliculitis. They were querying shingles to start with. My scalp is covered in horrible painful spots and my whole scalp is painful. Had to go to to out of hours at the local hospital today to get antibiotic changed to something stronger. By the time I got home I had broken out in spots all down my lymphoedema arm. Hope I donāt end up with cellulitis again. I had E-CMF 11+ years ago and I thought it was bad but it wasnāt as bad as Taxotere. Hope you get round to using your knitting wool. Iām managing to knit a lot of the time but am making more mistakes than usual!
Regards to all
Christine xxx
Hi Christine, Sorry to read about your recent health worries. Sounds awful to me and then to get another side effect to deal with after you have been to the hospital.Poor you. My fingers are too sore to knit but I havenāt the energy to do it anyway. Let us know how it goes over the next few days. Val