Yippee ! There is nothing like a good day at clinic to lift your spirits Even better when you manage to get out of there in record time!! Your post made me smile becauseI think we are all probably the same in being cheered up by something as simple as not hanging around clinic for hours on end !! Enjoy the breakand by the time the next cycle starts your batteries will be fully recharged and you will be raring to go! love to you and Janet x
Hi Min how crazy to expect Pter to make an arduous journey like that let alone the risk of others bugs etc Having only recently seen how much authority the Macmillan nurses have I agree they probably have more chance of finding a solution thats best for Peter It does seem unfair that those who shout loudest get the best care but thank goodness Peter has got you to fight his corner Go girl!! Having said that it must put extra pressure on you at a time when you must be exhausted. I hope you get a chance to take a break sometimes Min love to you both Bridget x
Dear Sarah it shows how many people cared about Gordon to have such a good turnout , it must be a help for you to know that . I bet Gordon would be pleased his red tractor is sitting idleand I am sure he watches over your son. What a wonderful family you have Sarah , to raise such a fantastic amount of money , especially as it must have been a very emotional day You must have been bursting with pride! Lots of love Sarah make sure you look after yourself and it would be lovely if you felt able to post on here from time to time to let us know how you are.Take care love Bridgetx
Hi Gina good to hear your mum is feeling better It is so frustrating to be stuck in hospital when you start to feel better but I am sure she realises hospital is the best place for now .I hope the results were good its about time your mum had some good news love to you both Bridget x
Hi Nettie, Jo and Dai I dont know for sure what comes next as clinic isnt until next week , hopefully I will have had the ct scan by then . Jo its funny but I had completely forgotten about Thalidomide and as I havent had it before it may well be my next treatment either on its own or with something else . I am assuming that as Revlimid hasnt worked then I wont be able to have it again, thats a question for next week Dai it seems there is a lot of new myeloma activity and whilst the radiotherapy should nuke the tumour I think my consultant may want to hit the rest hard initially Dr Yong is very good and for the most part her strategies have worked well in the past so I will see what she says on Thursday ,but I will bring up maintenance therapy if she doesnt. Nettie you are so right about the anger , in the beginning its all too frightening but as time goes on you resent myeloma intruding on your life Still anger is good if you channel it I am told. How are you Nettie? do envy your lovely way of life especially eating fish that you caught yourself!! My list of queries for next week is getting longer by the minute , which is good because I normally forget to write it!! Well The Hairy Grandson has just arrived for the weekend so I wont have time to dwell on things At the moment he is running around looking for a shoe or something else to run off with so that I will chase him, who needs a gym for excercise!!My daughter has told me the best way to get him in from the garden now is to shout Sausages, if the neighbours had doubts about my sanity before they wont now ! love to you all Bridget x
Thankyou what would I do without my lovely cyber friends to keep me going Sarah thank you so much for your post I have been thinking of you this week . Dai it is definitely a myeloma tumour , the mri showed an increase in myeloma apart from the tumour . I think the plan may be radiotherapy , hence the ct scan to get precise measurements, possibly followed by who knows what!! It occured to me that I will probably be taken off Revlinid as it has failed so I am unsure what treatment is next till clinic next week At least I know that radiotherapy is very good at getting rid of tumours as the last one disappeared quite easily , fingers crossed this one behaves as well!! I hope you all have a good day , its gloomy and raining here in lovely Beds!! love to you all Bridget x ps I have stopped cursing and have reverted to being my sweet little self!!Haha as if !! x
Great news Jet !! There really is no place like home and a spell in hospital certainly makes you appreciate it all the more . I hope your throat heals quickly , it is horrible when you cant eat or drink Dont forget take it slow when you get home ! love Bridget x
Hi Min I hope everything is going ok so far How disappointing that they dont have an isolation room for Peter , I would have thought that was the highest priority for sct patients I agree with Mavis its a good job Peter has you to watch out for him , but it saddens me that you should have that extra burden at a time when all you want is to help Peter get better love Bridget x
Hi Eve I just read your post and am now hopping mad , alright I am on a dex comedown too!! How can a nurse come out with such a c**p comment about the PICC line and really what is her opinionin the scheme of things!!! I thank goodness the team at UCH look at my overall welfare first and foremost , whether it is side-effects or the extreme discomfort caused by trying to access veins which are non-existent after years of toxic treatment!! I can honestly say they have never hesitated to find a solution to any issue I have raised and whilst they are very good at treating myeloma with all the latest treatments their first priority is my well-being. I would love to be a fly on the wall when you are having those heated discussions!!Tee-hee!! Good luck I am sure you will get Slim the PICC I hope they dont take too long !!Right rant over now I am going to find a happy song to bring me down off the ceiling lots of love Bridget x
Hi Eve well at least you have a plan now and the waiting is over I always find waiting makes me more anxious Velcade is a great drug and works well for a lot of people The first time I was on it constipation was a big problem but the dose was lowered and I took 3 forms of laxative every day Unfortunately the second time I was on Velcade it was discovered after 3 months it had not worked for me One thing to watch out for is expecting to feel better on the rest week , the first part of the week can leave you feeling exhausted but it does ease over the week I think you need to tell the nurses of any little changes especially any tingling etc in feet or hands so they can alter the dose if necessary and avoid PN . I did get some PN in one foot but Gabapentin eased it and it went about 6 months after treatment finished PICC lines are brilliant !! I have had 3 now and wouldnt hesitate to ask again if I was on treatment , like Slim and Dai my veins are shot The procedure to put it in is simple and just a slight sting nd taking them out is completely painless They can be used to take bloods and any IV meds So push for one !! Good luck Slim those numbers will soon come down love Bridget x
Good morning Ted I hope you have a wonderful birthday celebrating !! I think it doesnt matter how old we are we all want to have the best we can out of life! The trouble with myeloma is very few doctors who havent treated myeloma patients will have come across it and they read up on the bare facts without realising all the different elements to it!! Now you have been diagnosed the different doctors should all be aware of it Do you have a myeloma specialist nurse? They are great for asking questions you forget to ask the consultant and for lots of things like benefit information, parking fee refunds etc best wishes Bridget x
Hi Keith good to hear you are home where you belong and you conquered another obstacle with style!! Your wife and family must be pleased and relieved to see you getting better too Enjoy the lovely sea air just dont overdo things this is one time in your life when it is better to ignore any chores or things you have been putting off , they will wait till you are fightng fit love Bridget x
Dear Dai you have had the rottenest luck with Velcade , no wonder its getting you down! I d hope your leg and ankle continue to shrink being unable to get about as you normally do is so frustrating Over the last 5 years and countless treatments there have been several times when I had thought a problem was solved following logical thought processes only to find it didnt work like that!!Those are the times when you just want to scream in frustration or curl up in a corner.At the moment I am struggling with fatigue that is so draining , I often joke about being able to cat nap in the middle of a sentence but this last few weeks its so much worse and is making me feel rotten Its not even a quick nap thats needed but however long I sleep its not enough . Like you Ithink recent news of others pain has got to me , being unable to help is awful The other selfish side to it is knowing we can chug along with each treament thinking we are winning but that can change so quickly ! All we can do is keep on going and hope that tomorrow is a better day than today Maybe the sun will be shining or one of my grandchildren will make me laugh , sometimes its the small things in life that make a difference So heres to tomorrow being a better day for both of us Dai love Bridget x
Hi Roz wow the garden is lovely you must be very pleased with it The bench is so unusual did you have it made? You will be able to enjoy sitting out there and I am sure Micahael will be right there with you Hope you are doing okay love Bridget x
HiHelen good luck with your sct tomorrow . It is definitely worth doing and hopefully you will get a long period of remission and no heavy treatment ( thats the best part!!) I am sure you are well organised but just a thought take your own cup or mug with you When you are feeling a bit queasy tea in a plastic cup just makes it worse !! I hope you can let us know how you are getting on Onwards and upwards ( as Tom would say) Bridget
