Helen so sorry your evening was spoiled as said the lady might be old but that doesn't excuse rudeness . I have a wheelchair that I got through the physiotherapy people organised by the chemo nurses before that I borrowed one from the Redcross . Thankfully at the moment I don't need it except for really long walks. If you get one my advice is to get one you can wheel yourself .Mine is one someone else has to push and my wonderful family have a habit of leaving me in totally inappropriate places eg the middle of the pavement with "I,ll be back in a minute" and clearing off leaving me stuck. Its not until you are disabled that you see alot of problems that might seem petty . My bug bear is disabled toilets . Why do they have to put the loo roll behind you so you have a job to reach it! And why do they have to put the baby change in the disabled loo so you cannot get in the one and only disabled loo and why can't people who use the fold down changing mat fold the flipping thing back up out of my way ! I,m sure the people who design these things never actually consult a disabled person for their views.I could keep going but that would take all night . Hoping you all have a good night.
oh natalie that is so sad, poor Fiona must be devestated it all seems to have happened so quickly. I hope she will find the site a comfort and support.
Brr, getting colder here on South Coast, had a little snow today but think we are in for more soon. I like the snow but we live on a hill and always get it worse than the rest of Brighton and Hove and land up being snowed in for days. Hope that doesn't happen this time, not as stocked up as usual!
Keep safe and warm lovel ladies xx
Helen I am so sorry to hear about your eve. I do hope yo are feeling a little better today. Please as the other ladies have said mention your pain to your oncologist, I am sure a shot of radiotherapy may help. Big hug and stay strong xx
Helen so sorry to hear how your night was ruined.
If you feel up to it it would be worth writing to the venue, telling them of your experiences from parking,walking, seating etc and say how upset you were.....they may tell you of alternative arrangements you can make..and may even try to make amends..........You must reveal all on thursday.xx
Oh Helen, really sorry that you are suffering like you are. You must be firm when you go to your appointment on Thursday. You definitely need some tests. Like Belinda says it could be something that can be sorted by rads. You can't go on suffering as you are. I will be thinking of you.
Good luck. Lots of love Sheila. Xxx
Oh Helen I'm so sad reading your horrid experience of what should have been a lovely night. The old woman may be old but you quite probably are in more pain and less mobile than her so am sorry she was so unhelpful. As for the parking and stairs I wish venues were better for the disabled. I think it is hard enough for us but over the past few weeks you've been having a rough time and I'm sure this has built up for you. Sending you a big warm hug.
Hope everyone stays warm this weekend xx
Good morning to all 'mets' ladies. Hope everyone is as well as possible and keeping warm...good excuse for duvet days anyway!!
I wondered if any of you know how to change your 'sign in name' on here. I've looked on profile and settings but no luck. Perhaps you have to contact BCC??
many thanks for your help.x
Hope you are all okay today enjoying duvet days if you need it.I do admire those of you still working I feel really well but get tired so would struggle to work more than a couple of hours a day. Because of my sight problem I would be a danger to myself and others as I worked in a tradional sweet shop selling homemade fudge which I would have to cut up. I think me wealding the huge fudge knife would be against health and safety regs! I'm sure no one would want the odd bit of my fingers in their sweet bag! The weather here in N. Devon is horrendously windy We went down the beach again this morning if I hadn't been holding on to hubby and my crutches the wind would have had me off my feet. I am no light weight so that was one relly strong wind!! Have a good day everyone.xx
The waiting is the worst. I had a scan yesterday to see how things are doing but now have to wait two and a half weeks for next my appointment for the results.Trying to put it to the back of my mind so made the most of the good if not chilly weather today and went for a lovely walk on the beach with the other half and the dog. We have a rescue springer who loves chasing a ball or stick on the beach but she doesn't like noisy sea! She only likes gentle lapping waves nothing too rough so today was good for her. She also doesn't like loud noises of any kind either. She is five and we have had her for just over a year. We know there has been some mistreatment in her past life from her behaviour. Some people really should never be allowed animals it makes me so cross. Hoping you all have a peaceful pain free night.
Hi Girls, well after my post I bit the bullet and went to Evening Mass, it was so energising to go out and meet with my friends who have sent so many flowers and cards, you are all right,I need to try and "normalise" my life now that I have some more energy. Seeing a few Snowdrops in my garden today has lifted my spirits as well, Thank you all xx Love and Light xxMavis
Hi mets ladies
I hope everyone is coping with their treatments and side effects and that new treatments start to work quickly, especially for you Bev. Sorry if I forget anyone but as ever this is a very active thread - which is great, but means I forget things too quickly.
Mavis, I agree with JulieD, do start getting out a bit and doing the things that are important to you. It is so isolating to have this condition so the more you can enjoy yourself and get out to talk to other friends and groups, the better. As Julie says just be vigilant I suppose. In fact the one place I picked up some bugs from when on Capecitabine I'm sure was the hospital! Unfortunately I can't avoid that place The other things is to take some of the hand gel or wipes with you to minimise anything that you might catch , not all germs are spread by coughing.
Helen, I hope the pain is getting better and if not that you get some help with it.
Bev and Belinda, hoping you both are dealing with the SEs of chemo and coming out of the chemo bubble soon.
Sheila, good to hear you are feeling so much better, let's hope that continues.
Sorry I can't help with some of the questions about TMs and jaw pains as I don't have any experience of either. The only thing I do understand about TMs is that they can be quite different from person to person and, if I'm correct, even the way the laboratory measures them. As has been said its more the trend that the oncs look for.
To all those ladies I've not mentioned I hope everything is going well with you.
Remember to all wrap up warm, it looks like its getting cold again, that's if you haven't got it already, brrrr.
Mavis, it is sensible not to put ourselves at risk of too many germs as our imunity is low BUT we do have to have a life too. I think you are just as at risk in the hospital sitting next to people coughing as you would be in church. I would say, be sensible, avoid those with obvious germs, if you meet up with friends or go to church steer clear of those with caughs and colds, tell people your immunity is low at the moment and that you won't kiss them or come too close but don't turn yourself into a recluse, that will just get depressing. That's my view anyway xx
Sheila, great to hear you are feeling almost normal and hope next dose is kinder to you.
Bev remember what your lovely BCN said to you, give this treatment a go and hope it's 'the one' for you. Try not to look on too many sites for info, sometimes it makes things worse - don't forget we are individuals and so different things will or won't work for each of us, plus of course statistics are out of date, unreliable ....
Law, I don't see why rads should affect your mums face/jaw unless the reads are close to that area, if she was on bone strengtheners I might have thought it could be them. Mention it to your team though and hope things go well for your mum.
Staying hopeful, try not to worry about your mums TMs too much, it is the trend they look at more than the actual figures, TM can be very reliable for some people and not for others. I have known women with TNMs in the thousands who have come down to double figures. If the scans are ok and mum is feeling no worse it might just be a temporary fluctuation, sounds like the onc is keeping his eye on things.
Steris, big hugs to you. Thanks for text. Keep strong my lovely we're all there for you - catch up soon xx
Helen, please talk to your team, it may be you've got a pincheed nerve or that your pain meds need a tweek but whatever it is needs checking out.
Hope everyone who is waiting for results or having treaments have a good week. Love to you all xxxx
Hi Everyone, not posted lately but have diligently read all of your reassuring posts.I am still feeling good on Cape, but I go to see Onc on Friday for results of CT scan and cancer markers, feel that there is some progression in the rib cage because I am experiencing more pain.I use Paracetamol and co codamol as pain killers, but it is not quite hitting the "spot"Oramorph really messes my head!!
I was diagnosed last June and because of various Chemo attempts I was advised not to go to any social events because of germs. The only place I go now is many visits to the Hospital, and only about three trips to a supermarket, walking the aisles was very tiring.When I go to the hospital I am struck by how many people seem to be coughing and spluttering and I am beginning to feel I will be just as safe in the various groups I belonged to in my local church,I miss them.At the moment I watch Mass online(my church has a webcam)and my OH brings me Communion, a Holy Take Away!! feel strong enough to go out again and want to say "to hell with the bugs that might get me".I am worried I might become an agoraphobic and OH is terrified of letting me out into the wide scary germ filled world.God what a rant from me sorry. xxLove and Light xxMavis
Good morning everyone. Hope you have all had a reasonable weekend. I have felt ALMOST normal for the past week. It is my week off chemo though and it is due tomorrow so we shall see?
Bev, I am glad you are feeling a bit more at ease with things. That nurse sounds great! She is right about the team discussions. I was told a while ago that they had weekly meetings to discuss care etc. Stay positive for that holiday.
Janette, I hope all is OK with you. My onc doesn't seem to use TM even though we are treated at the same hospital. They are all different aren't they.
Belinda, hope the chemo stays doable. When I was on taxotere I think the first one was the worst although my legs became very heavy. No nausea though which is a big plus!
Helen, I am glad you seem to be a bit better but if you get a lot of pain again you must ring the hospital. Do they have a "hot line"?
When are you due back at the hospital?
Take care all of you. Love Sheila. Xx
I posted last May as my mum had just been recently diagnosed with BC and bone mets together and found your posts reassuring. She's been on Anastrazole since and her CA15-3 markers went down from 65 to 17. The last 4 results have crept up and today we've found out her markers are upto 56 from 27. They had a scan done inbetween the last results and these and are happy with those and my mum is also feeling really good in herself. I know under 30 is the normal range but I'm just wondering a) how high can CA 15-3 go? Is 56 worryingly high? and b) has anyone had results that go up to this sort of number and then come back down again? It's still an unknown journey for us and we're all feeling a bit low after today's result so was hoping for some reassurance from someone who's been in the situation. The onc has said to stay on Anastrazole for the time being as her well being and scans are OK and tumour marker readings can fluctuate. She has regular zometa and takes zomorph daily to control the pain (she broke her back which is how we found out).
Thanks in advance.