Hello Eve Tom Tony and Pat
Eve I think you should be the secret weapon, can we just bottle you and send you into the department of health? I know I should write letters saying what I think but I'm so lacking in the energy to do it except at 3 am on dex!
Tom you do make me laugh, if you walked into our day unit I'd speak to you! I was just staggered by all the beeping machines everywhere and the fact that if you were waiting for a drug you were slap bang in the middle of it all. I go on my own , I was offered a cup of tea but said no, didn't want to be a bother, silly me….. Then later there wasn't any!
The main waiting area is nice but very airy and cold and full of display cabinets with those polystyrene heads in them displaying wigs and hats and they give me the creeps, I don't want to see the reminders of hair loss and cancer. They really get me down. I also hate all those racks of information books , I think they should be in more discrete places, last week the booklets on closest line to me was about relapsing and it made me feel very depressed just seeing it. I know I'm relapsing I don't want to see that in print. I also hate how the toilets are in the waiting room and everyone's fully able to hear what is happening in there! 😛 🙁 🙁
I do talk to the people I know from the myeloma clinic but I'm not interested in other people's conditions really, I'm polite but its all about trying to deal with it and what is going to happen next.
Tony, that is a horrific tale! :-0 how does someone get that far into the system without detection? was there a recommendation afterwards or are there control of infection rules about the proximity of patients in chemo day units? How many of us when immunocompromised are put at risk . Where are the answers to these questions. I don't know who to ask……YET
Pat I'm on the sofa, I've knitted half a jumper, had breakfast, am contemplating lunch, answered work emails and watching TV. Dex still working! 🙂 the mark on my stomach is 4 cms round and very red but not sore I'm still feeling tired but ok. I can go in to get bloods done before I go to the unit, but they don't make up the drug until I get there and they can see I'm well, then it takes 45 minutes before it gets back to the unit from pharmacy. I suppose I will get used to it in time. What is really silly is that I know from reading Eve's stories with Slim last year, just how much hanging around there is, maybe there should be a pile of mailbags we could sew so that there is some profit from the wasted time! Perhaps I will talk to the hospital artist, we could do an art work called ' the waiting'
I saw Jenny Eclair, I love her, I want to be just like that! Oops maybe I'm halfway there:-)
Love Helen
Dear Tom and Tom 🙂
Well, I've survived, the first velcade and the dex is working well, headache and shattered, not much sleep last night. I have an enormous bruise on my tum:-( not hurting but……. We did everything right, no rubbing etc is this common? , clearly I will not be getting the bikini out!:-(
Thanks for the driving advice, definitely wasn't up to it yesterday, very light headed as I walked out of the hospital.
And incidentally to any of you out there with a view? what are the chemo day units like, facilities wise, in your various hospitals, I'm feeling like doing a little survey, ours is difficult and that waiting for the velcade to be made up, :-/ am I just turning into a grumpy old woman? Well yes probably, but while I'm kicking my heels on the sofa for the next week I thought I might canvas a few opinions to put to mm uk especially regarding cross-infection, proximity, noise, beepers, visitors, radio and having to talk to total strangers when I don't want to just because I'm sitting next to them. ( hasten to add that I was very polite, but so twitched up about yesterday, I should have been put into a locked side room for the safety of others! 😛 , she did offer me one but I declined as I thought it made me look too precious! What does that say about me?.)
I'm told that patients are regularly surveyed and they like it like this? Or do we say what we think they want to hear because we don't want to upset them in case it alienates? I think some embedded patient experience might be useful.
I hear you all saying ' my my look at that dexamethasone working, will someone steal the soap box or get the straight jacket out………
Buzzin Helen,
Hi Christine
That's all right then! I was told that getting back to pre mm fitness was going to be very very slow and not to push myself at all in the first few months. I never did get back to that point before I relapsed.
Let us know how you get on tomorrow.
Love Helen
Dear Pat thanks for this info, it's sometimes good to have an idea of what to expect even though we all differ so much. I'm not in contact with patients much at the minute, we are at the end of an enormous study looking at depression and have lots of tidying up to do. Once that is done I could sit back a bit, I am very lucky where I work, I can do paperwork at home and can do a lot of stuff on the phone, it is good to be able to plan a bit.
Thank you too San for your good wishes, hope your mum is still ok, no more eye poking has occurred!!
And Tom I'm glad to,hear you managed work ok, I feel a lot more apprehensive going into this treatment than the last time, I think I was sooooooo ill and didn't realise it then, i didnt have time to worry, whereas this time my counts are much higher and I'm near normal now I'm off the Revlimid. You don't mention driving, am I allowed if I have no ill effects, I've been warned off for this week and all treatment days?
Dear Dai You will be relieved that this treatment round has started uneventfully, I for one would like you to keep it this way! Spreading out the Velcade seems to be a good idea too so I have my fingers crossed that all goes well for you and it keeps you going for a very long time.
And Hi Vicki Eve and Mavis
I'm not a work addict, it's just that the diversion of it is good and most of my friends still work, children away, so home is not a place I have ever spent much time on my own except after my SCT. It was so hard being home alone then that I think I felt a bit trapped in the house. We have had such awful weather too that I was really trapped. I don't like viewing the house as a prison but maybe that is how I feel about it! Anyway, I'm prepared now for a few weeks of indecision and see how I get on with the treatment.
Also Mavis, it's lovely that you are able to forget about mm a bit, drifting in and out of the site is a good thing, I find myself less fixed at times too.
I'm not having any treatment on the carpal tunnel yet, now I know what it is I can just wear the splints, see how it goes with the velcade then see after the course finishes.
Love Helen
Hi Christine
I don't have much to add but I do wonder what you mean by keeping fit, is Chris working out? It's just that the effort involved with work out and muscle maintenance uses lots of energy, and I'm just wondering if that is causing a lot of stress to his already very pressured body?
Love Helen
Well, good people out there, does anyone have any tales to tell about working and energy levels while on Velcade? ( with dex and cyclophosphamide)
We're you able to do it? Full time? Part time? No time?
If not what happened?
Could you drive?
Did you have periods where you were 'good' and 'bad'.
Could you plan a day when you could do things and other days which were written off in advance?
I'm trying to make a decision about what to do, both short and long term, in fact I've tried to make this decision a few times already and still not managed it.
I start on Tuesday pm, nerve conduction tests show carpal tunnel syndrome so think it will not inhibit treatment, and the black eye was not worthy of any comment……. have I poked it on something. :-/ (well…..:-P I think I'd have noticed)
Love Helen
Hello Mavis
Thank you
I too was surprised! I had been told it was slow to grow and so would be a few months/ years before needing more treatment. I know my bmb has been the subject of much discussion with my consultant and his colleagues and the considered outcome was to start treatment now! I have a suspicion that the 'mixed' cell nature of the biopsy means that while the mm is indolent now, it could turn more aggressive. I haven't asked this question directly! I'm not sure I'm ready to hear the answer yet. I just have to trust them.
I'm still at work, I go for first Velcade on Tuesday then take things day by day!
Hope you are doing well at the minute?
Love Helen
Ps I think you look ok H
Dear David
Looks like you have done an amazing amount. Weather seems to have been good for you too. Hope all your other trips go as smoothly
Love Helen
Dear Dai and Eve
Thank you
I have asked about future trials, unfortunately there are none set to run here in the next few weeks, muk5 is on its way but you need to have tried Velcade and it has to have worked. Maybe there will be others I don't know. They are concerned about my neuropathy as there are very few other options if I can't have Velcade.
Anyway the plan is to try it next week, watch this space!
As for clinical trials, I've thought about your other questions Dai and wondered about adding in my 10 pence worth! As you know, my employment over the last 20 years has been as a clinical trials nurse! I have recruited and supervised thousands of delightful people on their journeys through testing everything from foot cream to antipsychotics, with analgesics and cardiology medicines, antidepressants and bandages to name but a few.
I don't have any answers. The trials are to inform. They give a general view….. We test a substance on a hundred people…. Watch to see if it works…. If it works for 80% with no side effects…… Then it's a winner! If it works for 50% it's also worth a punt…… But for 50% …… we have to remember that … it didn't work and that disappointment puts many people off. Until we can look at the biophysical makeup of an individual and tailor treatment it is not going to change and unfortunately I think we are quite a few years off that yet. The trials are also tailored so that there is as even a playing field as possible, if all the participants have similar disease stages and trajectories then we are able to make closer comparisons for efficacy.
Incidentally Europe doesn't accept American findings so that the European scientific and pharmaceutical business is able to compete with America so it is a highly political arena.
The National institute for health research is running a campaign this month, link below, which is asking patients to enquire more and get involved with more research.
I do think you are right , we have to ask what is available, but we have to accept that there have been many mistakes in the past with poor research and it is now very carefully regulated. I find it quite salutary that my mother was given thalidomide for morning sickness in 1959 and I have been treated with one of its analogues now… She never took it as she thought it might be bad for the baby,so my sister was ok. But there that is one of the reasons that drug trials are now so carefully monitored.
Love Helen
http://www.ct-toolkit.ac.uk/news/its-ok-to-ask-the-nihrs-new-patient-empowerment-campaign
Dear Vicki, Eva, San and Jean
Wonderful holiday in Cornwall thanks, weather splendid as usual down there. 🙂 Vicki, I took the daughter and the boyfriend……. Cost me a fortune they did…. Returned home to the usual frostbite and wind! 🙁 And a letter from the hospital detailing the velcade appointments, :'-( hey ho just got to get on with it but I still can't really believe it is happening to me:-/
Anyway, the pins and needles in my hands and feet, probably down to the myeloma and as the Revlimid is wearing off I'm noticing it, I have had it all the time, I am to have some nerve conduction testing and will be closely watched on velcade, maybe starting on a low dose and see what happens.
The eye?… Well more blood tests but not too worried … Will check the platelets ….as you suggested Eva.
San your mums results are heading in the right direction.
Jean, how is Frank doing now? I do hope he is feeling more like himself.
And Eva, thanks for your sound advice and support, I hope your trip is a good one and your son and gf indulge you well
Love Helen
Dear Eva
Many thanks for this, I will certainly see the optician, I have a supply of antibiotics too…. An enlightened haematologist I think.
San and Jean thanks for your good wishes, I've updated my recent thread.
Love Helen
Dear Dai
I hope it works for you again, i await your musings with interest as I start the same regime with added cyclophosphamide next Tuesday, I'm not looking forward to it, but suppose I must get on with it. I currently have pins and needles in my hands and feet and a black eye which I woke up with on Friday, just what is all that about?
Love Helen
Hi San
Yes thank you, even have a sun tan! do your mean its not always sunny? The friends we stayed with are going to invite me back soon apparently because I always get sunny weather in Cornwall! 🙂 if only it were nearer Northumberland ! Love Helen
Dear Andy and Steph
Thank you for going,to say goodbye to Keith and to support Sue.
Love Helen
