Dear Anthony
I'm Helen nice to meet you. In a former life before research nursing and mm I was an orthopaedic ward sister and as Richard rightly says, it's easy to try and pick out what was going on and the prequel to mm.
Re the knee replacements …..I hope this isn't too tedious 🙂
You should ask what your preop blood picture was like, I suspect you would be normal/ low normal for age/ gender/ known illness. Otherwise you would not have reached theatre on my watch anyway! 🙂 Knee replacement carries a high haemorrhage risk and so this is usually scrutinised well.
Kidney function is also assessed well pre-op so I I suspect this would be normal.
X-ray of the chest and femurs also done preop would show active mm lesions, but not diffuse mm cells. MRI scan will confirm active lesions but even they fail on diffuse cells which can reach very high levels before they show up on films.
During surgery any soft bone would be obvious though its rare to find lesions in knees.
Post op the body is under great stress to recover from even minor surgery, major surgery is often an event trigger of some conditions which are just sitting there quietly brewing! Mm can be very indolent for many years then suddenly triggers its self to become very wrong, very quickly.
You could ask these questions and get the results from your GP, you are entitled to them under the freedom of information act.
All in all if everything in the systems above, pre op, was grossly normal I suspect it was sitting there silently waiting, only showing its self in areas not likely to be inspected as you had no symptoms. In fact you say your counts have been low since which suggests that this was not the case pre op. now coupled with the eye problems you have started to present some of the vague galaxy of symptoms associated with mm.
I've gone on a bit ….. I'll stop. 😀
Love Helen
Hi Maureen
Glad you had a grand day out! ………. And why don't you go to Wimbledon if you have the chance of a ticket? you can't wait for myeloma to let up, it won't, but you must give yourself treats. I know you probably would want Ian with you but it's probably not to be unless you can enquire about the disabled facilities in advance. I have spent the last 2 years sending my family places, and I've watched the events they were at oon the telly. I've felt really good in myself at being able to let them go and as another mm patient I would hate to think my illness was wrecking their lives.
I'm sorry I sound as though I'm giving you a ticking off instead of a pat on the back, as Ian is now getting out and about then things are definitely picking up a bit for you two. Which is not before time as you have had a rough ride so far.
Love Helen
Good luck with this stage Tom, hope you have that sun hat ready for the bald phase!
Love Helen
Hi Wendy
Well this RollerCoaster does deliver the peaks and troughs for us doesn't it. I'm giving you the front seat now while we see what happens to you next. I'm not eligible for muk5 as haven't had velcade, oh hang on …. I have had Velcade now… watch this space!
Hope you manage to pack as much in over the next few weeks/ months/? Before treatment hits in again, I'm ok but tired on it. I don't feel much worse than I was on the Revlimid though so still working for the moment.
Love Helen
Hi San, Tom ,Ali and Vicki
You are kind, I chopped gems head off the pic by accident! The boys are being difficult and won't pose in their jumpers? Unless drunk 😛
I wish there was money in it San, I'd do it like a shot if it'd make a living wage but it doesn't, I can't grumble, I do get the occasional good commission but they are few and far between. Gems jumper is about 60 hours and 800 gms wool. You have to LOVE knitwear to commission it or be very rich. Or have a nice aunt like me:-D
Back to Velcade and chemo unit, said my piece, reported findings from all you people to our day unit, a review is happening. 🙂
Then I waited 2 hours for 8 minutes attention today, on one of those hard plastic cafe chairs, couldn't do anything about it as felt sick when I got there and had to wait for anti sickness tablets to work. 🙁 bad day , very very tired
Love Helen
Dear David and Anne
Re the fluids, we need to keep our bodies flushed as kidney function maintenance is paramout. We excrete about 2 pints a day just breathing but the body is clever and it keeps what it needs and so we have to flush it to remove light chain deposits by peeing regularly too. There are a lot of myths about water versus other fluids, all count, even tea and coffee and especially beer I understand! Good idea not to have too much sugar in the fruit drinks. So for the water haters out there, there are other tipples. As long as it all adds up to 6 pints a day.
Love Helen
Ps I keep the water bottle line up, it is an easy ready reckoner but I keep a line of empty tea cups too and stop when I get to the end:-)
Dear Ali
I hope your mum has a fabulous holiday, I've forgotten where she was going, was it a cruise? I have loved my holidays recently, we were in New Zealand this time last year and should have been going to Peru this week, maybe next year, I live in hope but fear probably not going to get there.
Nottingham isn't far from Newcastle to visit. As Tom knows we are quite civilised up here! We have electricity and such like and lovely beaches just up the coast for proper holidays with small children, then you could drop your wool off and I'd knit you a pully, mind you my time frame is slipping, I might to give up work soon to keep up with my increasing knitwear business!
I have attached a pic of one of my recent creations. The proviso for me making them is a tasty photo in classical knitwear pose!,,:-)
Hi San
Yes I think you might be right about other wool stuff but I have so little time to do all the things I already have in mind that I'm feeling a bit pressurised by my stash of beads and wool. I did a spot of felting recently and it's very addictive. When knitting goes out of fashion again I will have to give it more thought
Love Helen
Hello Pauline and Marc
Welcome, my journey with this bunch began with the Myeloma xi trial in February 2011, I had RCD and SCT within 6 months and then had around 18 months remission. I've just recommenced treatment last week for relapse, but I'm good. Back to work tomorrow.
Hang on in there while you get used to the new life you have.
Love Helen
Hi Vicki
Thank you, I'm doing quite well really, tired of course but I'm feeling ok. On the dex down day so have sloped off to bed leaving the husband and neighbours carousing in the garden, I feel they have had enough exposure to my dexilicious behaviour over the weekend that they need a few hours off!
I have always been able to knit, and did it reluctantly from age 5 to 23, then stopped as it went out of fashion, my aunt ran a wool shop so knitting was obligatory. I picked up the needles again to do a fairisle sweater about 6 months before I was diagnosed as I felt it made me look as though I was doing something but not using any energy! Since then it has been my saving grace, the more complicated the pattern the better and the most expensive wool you can buy……better again….. Why…… Because if it is expensive and difficult you have to concentrate hard on it, and in doing so you do not think of myeloma, sometimes for minutes at a time. 🙂
Hoping you are able to get away soon and put some holidays under your belt.
Love Helen
Dear Wendy
What a blow, are you having BMB as well soon? I'm hoping there is still fluctuation room in all of this upping and downing.
I am glad you enjoyed Paris without this knowledge though, the little holidays are islands of normality. Fingers crossed for you.
Love Helen
Sadly Eve I think you could be right but I live in hope! You make a good point about noise, I'm much more sensitive to Noise now as well, I'm up looking for the source of irritating noise at all times and also get driven nuts by music, which in a family of musicians can be a little wearing. i wonder if that happens to more of us, if so it would explain our irritation with clinics.
i do hope the holiday is fun and relaxing, with lots of sun.
Ali I'm taking the tissue issue on board but won't make it part of my recommendation 😉 incidentally to be really yuk here but as a hospital person you won't mind( I'm not sure about the rest of our readers however) when my daughter was little we stayed in a posh hotel where they had no toilet brush in the loo……. She discovered that lining the loo with tissue meant no dirty toilet……
Love Helen
Dear Eve
I'm sorry I missed this end of your thread, we have no bluebells up here! I have those Spanish ones in the garden and the aren't out yet. So I never read the last stages of it.
Anyway I am sorry to hear about Slim, what an anniversary gift! He and I have now had 2 .4 years on the treatment wagon. It seems no time at all really.
I hope RCD works as well for him as it did for me, get away in your van for a few days, I hope the sun shines and I think Vicki is right the sun and the beer certainly make you feel better.
Love Helen
Hi Mandy
Sorry I haven't caught up with this either but good luck. Tom is giving sound advice as usual , especially about the eating! Eat as much as you can in the next few days, you will need all the energy you can possibly store. The ill bit for me started 4 days after my cells went back and my hair fell out very slowly from 4 days after that, I just picked handfuls off the pillow for days then most of it went. Be warned….. It doesn't all fall out, you only lose the growing hair the stationary hair can stay for 6 months but you look very moth eaten. I came home in my wig but the wispy hair I had left I kept for about 3 weeks before shaving it all off. Just keep drinking lots and moving as much as possible in your little cell for as long a possible and then just rest. You will get through it, I spent a lot of time if not sleeping just lying very still and doing relaxation exercises and listening to the radio.
Love Helen
Dear Jean, Eve, Tom, Ali, Megan and David
Am now putting all comments re clinics in a letter, and have contact name for someone to address these issues with, hurrah for dex! 🙂 and Eve I have new iPhone for birthday so have note pad with enormous memory and sat for 2 hours today making copious notes. I did tell them what I was doing and I expect that as a direct result if this I will be in and out in 20 minutes next Tuesday, 😀 >:-) I was of course as charming as possible today and politely declined the big noisy room in favour of the side room and the cup of tea! Then rang specialist nurse for chat so she could observe slowness, cunning eh! :-0 all in all ok though but took 2 hours 30 mins. It is also interesting that this happens everywhere but these are issues being addressed now. I will keep going.
Re the Knitwear Eve, I have system here, I invited family to buy their own wool and patterns, that way they would have vested interest in said garment and might wear it, and not just finding me things to do! Only provision is really good wool and no time frame for me in case i was more ill. As house is now so well insulated with bags of wool waiting for me to knit up, I am still offering same service but time frame is looking like a year now………… Of course if I gave up work I could have side line:-D
I'm ok after 2nd Velcade but really feeling 3rd dex, should stop writing now as brain is running so much faster than fingers I'm unable to keep up. Had visitors round tonight, couldn't get word in edge ways I couldn't stop talking:-S
Love Helen
Hi There
Just to add to this, when my sflc's went up a bit in march my consultant said he would wait until we had confirmation of my BMB result before relapse was determined. Until he decided i was relapsed, i was in remission! BMB was after the third definitely higher result, they crept up over the previous 6 months in a continuous slow rise, as I think David described his numbers a few months ago.
Love Helen
