[MothasParticipant]

Helen regarding driving I would check with the consultants. I do drive but since I had the plasmacytoma in my shoulder I haven't really bothered as it is uncomfortable.

I would say that most of the time I would have been fine to drive, the odd day I wouldn't have wanted to because I wasn't feeling well enough. But do check.

[tomParticipant]

Hi Helen

Yes its work but not hard work to be fair as I have been looked after like a long lost Son at my workplace.
As for driving yes I did and still do after my SCT in 2009 I had to go back to hospital every week for bloods and a check up and I drove to and from Hull 😀 , even after my BMB at 100 days I took a Friend with me to drive home if I was in too much pain but I was Ok so I drove.

Stay well and good Luck.

Love Tom Onwards and upwards.
ps as for being trapped in your home get a dog it takes you out and you meet other dog walkers 🙂 x

[HelenParticipant]

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,

[eveParticipant]

Hi Helen

I am the carer,and cannot blame the dex8-)
Hospital waiting times,grrrrrr organise yourself s if I started,I would need more than this topic. I found it horrendous ,far easier to do a 60mile round trip,specially when Slim was not feeling to good,I have been known to take Slim home after Velcade and go back on my own for tablets making it a 90 mile trip.

The worst thing about it ,no one gave a dam,attitude was I do my job,must be someone else,s fault:-P

Talking about surveys met a friend who is doing a survey,s for NHS for ccgp,s laughable ,they are asking questions concerning services in GP surgery,s as lots of services are going out of hospitals and into surgery s ,sounds great,but what there not saying its privatisation by the back door.the doctors budget will pay for those services,but has a doctor the experience to diagnose unusual cancers like Myeloma,I suppose GP are cheaper than consultants.:-)

Bring on the soap box plus the DEX.

Glad to hear you do not have side effects,Slims started about the third cycle mainly became anxious,but he new he was being unreasonable,just really believed I was going to have an accident. Love Eve

[tomParticipant]

Hi Buzzin Helen

Lol I know how you feel 🙂 but I really wanted people to talk to and still do (too much all my gaffers used to say Lol) but we have two side rooms at the place I used to go to for treatment, I was asked if I wanted one at the start of treatment but declined (I need company Ha ha).

But to be fair I got more info out of the Partners/carers than I did with the MM'er lol.

Just for your Survey Helen stick me in the Box "Needs NO Needs Company Lol"

Love Tom Onwards and Upwards xx

[tonyfParticipant]

Hello Buzzin Helen, you really are Buzzin!
Let me tell you a little tale about open plan clinics, back in January prior to my stem cell harvest I was in the day clinic for my monthly penidronate infusion. ( i chat to everyone, so would probably get on your nerves! ) Some weeks later, after the stem cell transplant, I was recouping at home, the post arrived and there was a letter from the hospital telling me that I had come into contact with a TB sufferer, not something you want to hear after going throu the stem cell treatment. I later determined that it was at the day clinic that the contact had been made! Needless to say I had all the checks, yet another blood test, and was found to be clear, but it did give us a few sleepless nights, as you can imagine. There were a lot of people having the tests done, so it must have been a real aggravation for the hospital.
Next time I attend the day clinic I'm wearing a face mask! haha
So if the mm doesn't get you then your fellow patients just might!
Regards
Tony F

[PatGParticipant]

Hi Helen,
Glad to hear that things went well for you. I get a 'mark' on my stomach after the injections, one side more than the other for some reason, and so make sure I alternate sides so that it doesn't get too bad. The skin does get very dry there after a while so plenty of moisturiser is called for.
As for the Day Clinic – well I have the blood test done at my local Loughborough hospital the day before, ring Day Clinic on Tuesday morning to see if all is well, take Dex and then go in to Leicester Royal Infirmary about 14.00. Injection is normally done by 14.15 – 14.30 and I am away. Not too much time hanging around and not too much chat if you are not in the mood. It does appear to be organised chaos at times and I am dreading next week as Monday is a Bank Holiday. Phlebotamists are not working which means going in early to have bloods done and hanging around along with everyone else who will have the same problem. Oh well, can't have everything. But make that grumpy old woman number two. Mind you after watching Jenny Eclair last night that's not such a bad thing:-)
You may have noticed I am still on the dex sleep pattern but will be back to normal by tonight! Plenty of books to read for tomorrow just in case.
Hope things continue to go well for you.
Love and hugs
Pat xx

[HelenParticipant]

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

[MothasParticipant]

Ha, ha. Helen you're [i]well dexed up,[/i] as the kids on the street would say 🙂

I forgot to mention about the injection site bruises. Yes mine came up lovely for every dose. Occasionally itchy but aside from that nothing much to worry about.

Here is the perspective from UCLH.

We're spoilt rotten with the new Macmillan Cancer centre, as it's dead flashy and everything is brand new. The chemo suite has a floor of it's own which is open-plan with big comfy 'designer' chairs and lots of light and space. I think the best thing i can say about it, is that it doesn't look or feel like a hospital, but rather a 'chill out area' for some flashy club or architects office.

There's a nice tea lady who comes round and offers tea, biscuits and sandwiches. On the whole, the staff were excellent, friendly and thoughtful.

Waiting times varied. Sometimes I had to wait a couple of hours for an injection that took 5 minutes including observations. Towards the end of my third cycle though they had instigated a new protocol. As Velcade is given very quickly they processed us as soon as we turned up, rather than let us wait in the 'queue' so I could be in and out in as little as 15 minutes (excluding blood test which is taken in 'the basement').

tom

[jmsmythParticipant]

Hi Helen

You are having a bad time 🙁 . I hope things start to improve soon and you get back to your old self soon. Re the day clinic; we went yesterday and Frank has started Zometa again. Normally when we go in, bloods are taken, wait begins, we see consultant and then sent to wait for a chair to become available for the infusion. This as you all know can take hours. After we saw the consultant Frank went down to get his place in the queue and I went to make the appointment for four weeks time. . I went to the waiting area and couldn't find him. Wee nurse came along and asked men if if I was looking for Frank and she pointed me to what I thought was an office. When I went in there was a man getting Zometa and Frank being set up. Heather the nurse explained that they where trying something new. She explained that in the unit some treatments can take hours where Zometa takes 20 minutes. In the unit you may have to wait some time after you have beeped for a nurse to come. This room was an old discarded office. She said as Zometa is quite quick they decided to try this. Been doing it for 2 weeks and it has been a great success. As soon as patient registers the Zometa is ordered. I know I waffle but the long and short of it is we were in and out of it in 30 minutes which included talking with the nurse and filling in a questionnaire.

Helen have everything crossed for you
Love Jean
Ps the other man with Frank has had MM for 12 year and had transplant 5 years ago and is still in remission

[eveParticipant]

Hi Helen

To be fair about the unit,they have improved,opened another section,have taken on more staff,volunteers who help in hospitals fetch and carry drugs,before poor nurses were doing it,and would not let carers do it. So they did listen after written complaint, I do think they might be dreading us returning. LOL.

May I suggest you take a rather large book to write in,do a time and motion study,chart your own experience as this would be good feed back from the patients perspective , I left it far to late,use to comment verbally,by the time I got so angry Slim was near the end of treatment.My complaint was Lack of Co Operation between Departments,as they just do not seem to work together,when you have mistakes because staff are busy,for example prescriptions not sent down in error,the pharmacy still make you wait.So it's the patient who suffers.

The problem you have Helen is you are not institutionalised,you should know as a nurse anyone spending long periods will eventually become institutionalised and more compliant with the situation,go on be a rebel or even pro active as young Tom says,it's normal for me.;-) 🙂

Saying that I sent an e mail to Slims consultant with the knowledge of a Myeloma Trials person,no reply yet,consultation is tomorrow morning.:-P
My job many many years ago,was dealing with complaints !!!

Interesting story today,recently we have changed surgery,s as after Slims fiasco with old GP,the doctor who diagnosed Slim left old surgery,she is a good doctor and rumour had it,they got rid of her,I was told today over 400 patients left the practise.
The one thing you can do is vote with your feet.

Good luck Helen.Love Eve

[tomParticipant]

Hi Helen

Yes I agree Eve should be bottled 😀 but don't let me get her mixed up with my Vodka Lol.

Am pleased you would talk to me Helen but would you still next time we met lol. I always go on my own to Hospital as the young bride (Elaine) looks after our Grandson on those days :-D, and I let him pull any plasters off that I might be given but I don't have any these days as am drug free 😛

Stay Well Helen
Love Tom Onwards and Upwards xx

[eveParticipant]

Hi Tom

I am very thick skinned,and I do not just mean I am fat.but I have a very soft centre. Luckly Slim loves me,he would be the first to tell you he loves never having to worry about anything. (Control freak ) never,just cannot abide a job not done properly.

Helen if you are taking up knitting can I put an order in for a cabled sweater,,!!!
Tom I am a G&T ,vodka no thanks,in Portugal they make Viga out of Figs ,sure it means fire water or gut rot.more or less the same as vodka.

Love Eve

[meganjaneParticipant]

Hi Helen,

Velcade seems to be particularly annoying for wait times. Phil had to go in for the blood tests in the morning and then they had to wait for the results of the tests before they would even make up the velcade and then you had to wait for the velcade to be delivered to the ward and then you had to wait for someone to inject it and then finally you could go home. For a grand total of about 10 minutes of treatment Phil was often there for six hours or more. There was no option to have blood tests done at our local hospital the day before so Phil just had to go and be prepared to wait. I don't think you are grumpy at all, there has to be a better way to organise it but I am not sure what that is.

Even now that Phil only needs Zometa once a month it can still be a longish wait. This month it was about four hours at the hospital. Bart's has a tea/coffee/water/juice trolley with biscuits in the main waiting room where you can help yourself so there is no shortage of drinks but the chairs in both waiting rooms are very uncomfortable. Phil and I can never understand why you would have hard, low, plastic chairs for people who predominantly have bone damage. The good thing about Bart's though is once you are called through to the treatment rooms the chairs for the patients are comfy (the relatives find whatever they can to sit on!) and once you are in the chair you can stay there all day until your treatment is done if you want to.

Phil was put in a separate room twice to wait by himself when he was recovering from pneumonia but I know there are not enough private rooms for everyone to have one. The germs in the waiting room did concern us a few times, it often seemed to be the carers/relatives/friends who were coughing and spluttering the most 🙂 but we were both very careful to use the hand gel often and to not breath too deeply while we were waiting. We couldn't really complain too much about this as we get the London Underground to and from the hospital so who knows what we come into contact with on the journey!

Phil (and I) have enjoyed talking to other patients and carers while we wait as we find out lots of useful info that way and it passes the time but sometimes we would be anti social if Phil wasn't feeling great, he would snooze and I would listen to my ipod.

I know it is a bit late to answer your earlier velcade questions but Phil alternated having the velcade in his stomach with having it in his upper arms, there is some debate online about whether this is as effective but Phil was never told he couldn't have it there and it spreads the bruises out and allows the various injections sites to recover a bit. Phil was also never told he couldn't drive and he did drive off and on throughout his treatment but I think, as with so much with Myeloma, it will depend on how you feel on the day.

Megan

[tomParticipant]

Hi Eve

I also am "Thick Skinned" but I like to say to folk "You wont bother me because I am Thick Skinned" and that Gap between the two words works wonders for me Ha ha. I know you have a soft centre 😀

And trust me the Vodka is Good for well me Lol

Love Tom xxx

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