Breast Cancer Now Forum

too tired to type but thought my days were up. Spoke to Chris and hopefully you will hear updates somewhere. Just popping in to say I am still alive....just!! Val xx ... View more

Hi girls. Was near death's door and hubby called duaghter in France to come to assist. Not able to walk unaided without help. Thought my time was up. Thanks to \gp talking over my care and on reduced meds am feeling a bit better but early days yet, Not well enough to attend hosp so off all infusions. In PJs most ot time. Girls a great help and Jo here until end of month. Too tired to type. Scottishlass sends much love to all. XX Val. ... View more

Just a quick reply, not had time to read all your news. I had signed up for a trial to start a drug called Salivex but neeed to have a complete check up first. So usual bloods, Urine, lungs and chest, found out my pulse was rather high, so then through to have an ECG, only fo find machine broken. So called in next day to go to another ECG machine in main part of hospital. The doctor called me at home later to tell me that at some time I have experienced a heart attack ......, unbeknown to me.....So went in following day to have Echo CG which could tell us when the H/Attack took place only to find that the machine is fully booked for 5/6 weeks but have left my phone numbers and told them I could be there in 10 minutes if anyone cancels. In some ways I am pleased I volunteered for trial drug as I would never have known about the heart attack otherwise!  I am unable to do trial but will know more next week. Feeling very breathless but my HB is fine. I am going for bone strenghener on Monday afternoon and may have more to report by then. To top it all I was told to come off my Magace last week as another drug has improved my night sweats. they have disappeared.......only to have a period like discharge to cope with on top of everything else. I am a bit breathless and tired but had a lively afternnoon with 3 friends at my house where YD ran around making coffee for all etc. OH was our walking with 2 pals but had the house all ticketty boo for me before he left. Hugs to you all. Keep well, Love Val. XX ... View more

Hi Rowan44, I have replied to your PM. Hope it helps a little but feel free to ask any questions as they come along. That is how we learn, little by little. There was a time when we were all new to this and have only learned by asking questions on here and sharing experiences, Hugs, Val ... View more

Night Night Lisa. Hope your op went well. Will scrpll back tomorrow to see what you have been up to but do follow your antics on the other site!  ... View more

hi Ponsmuir and Mema 23 good to know you have been keeping the thread open.  Scottish Ass indeed! Now that would have been an apt desciption for me a few years ago but I am more of a No Ass Lass now as I have lost so much weight!  I am trying to put some weight on now but it is difficult to do. MY OH is a good cook but I just cannot eat as much anymore so it is hard puting the weight back on again. I am only about 8 stone 6lbs and size 10 where before lots of chemo I was a size 14/16.  It is not a good look so be carefull what you wish for because I always wanted a flatter tummy and a smaller bum.  I wish I had a curvier body again, I really do. I am lying flat on my back in bed. Have been reading another Peter James Novel, the crime writer whose series is set in Brighton. I was there many moons ago and would like to visit it again....without the murders though. Night night lovely ladies. Sleep well. LOve No Ass Lass ( for today only!) ... View more

A Happy New Year everyone, sorry I have not been on the site for weeks but plan to pop in more often now. Congratulations on the birth on baby Tiny Lily. Hope Lisa and Carole are getting over their operations and treatments. I have not been well at all really, struggling a bit and feeling like a frail old lady, which I suppose I am   The Pain management team phoned me today and have agreed to see me on Thursday to see what they can do to help. I see my Oncologist next Monday and wonder what she is planning for me next. The pain in my lower spine, ribs has totally healed and now I have pain in my right shoulder and right knee. I have had to up my morphine and am on 70mg twice a day now. Plus I need pain patches on for 12 hours a day or night for my shoulder or knee. I had to come of my Dicomax because it was affecting my kidneys and when I increased my Gabapentin my hands started to shake all the time and I couldn't hold on to a cup of tea.  Now thats enough for now. Christmas was lovely but did not enjoy new year. I have started to go out in the afternoons for short walks and managed to have a walk along the beach at Pittenweem which really lifted my spirits. Lily for the first time in months I managed to bake some bran scones which we had with butter and cheese. Too tired to write anymore but will be good to catch up with you all again. Much love, Val ... View more

A Happy New Year everyone. Sorry I have not been on here much but am hoping that I will get back into the routine and visit the site more often. I know many of you on here so hello to you all, and a warm welcome to all the ladies I do not know yet.  I have been dealing with bone mets for a lone time now. I first had BC when I was 39 and continued to work for 10 years when I found that I had extensive bone mets in 1999. I have been having all sorts of treatments over the last 15 years but am having a break from chemo just now.  Just wanted to let you new ladies know that there are long term survivors out there with Bone Mets.  Will look in here again soon and see how you are all doing. Feel free to ask any questions. Love Scottishlass. ... View more

Hi girls, sorry not been in touch but just read back all the new posts and now ehausted haha. I saw Consultant yesterday. Not such good news. The Vinorelbine chemo has not worked for me and my TMs are rising quickly. The bone scan was much the same as last time but a couple of spots have got worse. The pain in my wrists arms is thought mainly to be arthrytis. I came off my Diclomax recently ay her request as kineys affected,( after 15 years being on it)  and increased both my Morphine and Gabapentin as she instructed and can take more still of both of these painkillers. But the news that floored me was that she does not want to give me any more chemo as I am vary frail and too thin and not gaining weight. She said that she thought we should concentrate on quality of life more than quantity. I was quite upset at the time but now that I have time to think things over I have come to the decision that she is right. I don't think my body could cope with any more chemo. She has said I can restart my Femara (Letrozole) the hormone blocking tablet. Now i the time for me to try to build up my strength and attempt to put some weight on becasue I look like skin and bone and it is not a nice look! I have not been well enough to send any cards this year or buy any presents at all but the people that matter all understand because I am so frial it takes time for me just to do the basics like have a shower etc. My Cons will see me again soon to see how I am doing but I knw my body just couldn't take anymore. I feel a weight has been lifted now that I know whre I am going and I will just have to try to be patient and try to build up my stamina. Wishing you all a happy happy Christmas and a Great New Year and hope that 2014 is a great one for you all. HUgs and stuff, Val XX ... View more

Hi Ladies, Have read back a few of the posts. Lisa, I am sorry to hear about your pet Pobson failing and it made me sad. Perhaps it is time for him to go as it can't be much fun for him when he is whimpering. He must be in discomfort. I know it happened to one of my pets and it broke my heart at the time but suffering is just not fair for him. Hope you are not offended and that is not my intention. I am going for round 3 of chemo (vinorelbine) on Tuesday and my bone scan is on Friday and that is to see if there are any hot spots (Lily that is to do with the arms, wrists, base of spine and ribs that are painful). A lot going on at the moment.    Consultant has another chemo in mind if this chemo shows not to be working but I want to have one more cycle to see how it goes. The next chemo she has in mind will mean loss of hair again but trying not to think that far ahead yet. This would be in the new year,     My calcium levels are high as bones leaking calcium, my HB was low so they gave me a blood transfusion for that. I have come of Diclomax as my kidneys may be affected and I increased my morphine by 50% to ease the pain. I am not any more tired after this so I must need it or I would be in more pain. I slap on a pain patch now and again which helps if I am going out. But I think my walking has improved so going out later to see if walking is still easier.    I am trying to drink more but am constantly thirsty and have a dry mouth and at night I get itchy sometimes so take piriton for that. OH was out yesterday so I did a few chores around the house but my ribs are sore again so perhaps I stretched myself too much.    Not coming on this site as much as most of the secondary ladies have migrated. But girls do not be worried or concerned too much about me I have been honest just to let you know how I am and what is going on.    I spend my time on my laptop watching things I have missed on TV, I still manage to concentrate enough to read a book, and I am not feeling depressed, just have a bit of a wobbily sometimes and had a weep when the BCN phoned me because she had missed me at the clinic, and she was so kind and supportive and said my Consultnat was not throwing in the towel for me yet and would continue to do what she could for me. But I do think that things are moving on a bit too fast for me and not in the right direction. Just when I think I am doing fine, something else pops its head up out of the blue. It is ok coping about what you do know but it is different when they say something else is not right, for example my kidneys, I as thought they were working fine. Anyway will know more when I see Dr on 16th Dec to get results and may hear some news on Tuesday when I go for cheno and bone strengthening.    Love to you all. Still have not baked anything but have itchy fingers to get the baking tins out. Will be in touch soon. Hugs to you all. XXXXX Val ... View more

Whole paragraph missing from post. The bit after my blood transfusions does not make sense.....I was referring to "Breaking Bad" which I have been watching free on laptop. It is very addictive but not for those with a delicate nature. The ward told me yesterday that we now have wi-fi so can take my laptop in when I am there tomorrow for 4 hours. Hope this makes the first post readable!   ... View more

Sorry to absent for so long. Lisa I haven't finished chemo which a lot of people on FB have commented on. If you look at the start of the post I wrote about finishing chemo in APRIL. Someone added a comment recently and everyone seemed to think I had finishedchemo but I had finished Taxol back in April. Well I am now on Vinorelbine. I have had 3 infusions so far, the last one was yesterday. I have infusions on week 1 and week 2 then I have a week off. To be repeated until around Feb/March I think. When I went yesterday I had my bone strengthening infusion first and then the chemo and just I I thought I could go home and Richard came to pick me up they told me I needed 2 units of saline ( had to have it a few weeks ago) as something in bloods resuts too high, think it was Urea was too high.   Not good news on bloods as HB now too low and calcium levels too high. My appointment was 1pm  and I did not get away until after 6pm.      So tomorrow I have to return to have 2 units of blood which will take 4 hours or more.Any of you watched this yet. You can watch it free on the laptop and it is very addictive but NOT for those with a delicate nature.!!      Then on Monday I go to see my Consultant about painful wrists and arms.  I wasn't due to see her until late December but head nurse arranged an earlier appointment with her in case I need bone scans or any other scans. May be all or nothing. I thought it was due to using crutches when in France in Oct but returned on  Oct 12th and not improving.  Then on Tuesday I return for next chemo infusion and then hopefully I will have another week off. What I do not understand is that I was feeling so much better this last week, not breathless or lacking energy.     Last Friday was a nightmare. My aunt's Daughter' son was unwell and attending the GP. He called his mum to help in tt the loo around 5 30 and she made sure he got back to bed. Then at 7 30 she went to check on him and she found him dead in bed, aged just 23. Then my friend had a heart attack and needed to have 2 arteries unlocked and a stent put in but they couldn't unblock the second on as she was too distressed. But she is home now and I am puzzled why they did not keep her in hosp until they could carry out the second procedure.    Having to take it easy today under R's strict orders. He is making me a lovely pot of soup and listening to the radio in the kitchen.  Have read all your posts. Sorry I have not been on the BCC site much. Keep well all of you going through treatments etc. Much love to you all, Val X                       ... View more

I hadn't ever heard of the pain management team either and had been attending the hospital for years! My pain was so bad once Joules that I did go to A and E and had a morphine injection done. It helped enormously. I had been trying Oromorph Liquid before that, that eveing but the pain was getting worse and worse. The injection did the trick. I was crying with the pain. But that was several years ago. Someone should be able to help you with something that will not affect your heart. You could always phone your Consultant's secretary to ask if there is anything she could advise to help with your pain. Hope you get some relief soon. I am away to have a soak in the bath to ease my sore tired back before I hit the bed with the electric blanket on. There are lots of tips on ways to cope with pain. Hugs Val ... View more

Hi Joules, Is there a "Pain Management Team" attached to your hospital because I have found them to be very helpful. The first time I went the re-jiggled my meds and introduced me to Gabapentin ( someone else mentioned this drug below). The had a lot up theiir sleeves to help me. I talk slow release MST and recently had to increse it from 30/30 to 40/40 which sorted out the increase pain. I have liquid morphone but seldome need to use it now but it is there for emergences. There are also Lidocaine patches that you can slap on painful areas. These can be cut so that you could put a maller piece on your lower back and the other piece where there was pain. You can only keep them on for 12 hours and MUST remove them before a bath or shower. So if pain is worse at night you can use the patches then. But if pain is when you go out in the day you can use them for 12 hours in the day. If you are on diclophenac there is a slow release one that they recommended rather than taking the normal one in the day.  I am sure there is more I can add but that should be enough to get you started. I have had bone mets for more than 14 years now and find with proper pain control ( for me that is) is possible. Take care and let us know if you get sorted. LOve Val ... View more