I went to a leaving do last week. For an old workmate who had met at Training school in 1970
There were equal numbers of old and retired and new and serving colleagues.
Without exception all the 'old' people asked how Peter was, One young person asked too and another said Im sorry MIn Im frightened to ask how peter is in case it upsets you or he is dead!
Ironically two days later two of those ex colleagues died on the same day.
One of a heart attack due to hardening of the arteries the other from a Brain Tumour secondary to breast cancer.
Both of them considerably younger than Peter.
Thank the lord no one knows what the future holds for them.
MIn
Got to have my two penorth as Peter has Kappa light chain too
This is getting complicated but I may be able to shed some light on the figures.
Only because I dug out some results form the time Peter was 1st diagnosed. and was awaiting his transplant and They are from Birmingham University too.
1column Kappa MG/L Lambda Kappa/Lambda Ratio.
……. 173.64 ………………… 5.66 …………………….. 30.678
Grab a calculator and devide 173.64 by 5.66 and thee result is 30.678
If I recollect correctly the 1st set of figures 173 was always the ones Peters consultant used to and still does quote
perhaps Eve you are being given the Ratio figures which look good on Paper but Im too thick to understand.
I used to ask for copies of the University of Birmingham letters but dont need to now as the FRH has its own SFL MACHINE/ANILISER
But let me tell you Peters last lot of figures were in the High 4thousands July and doubling each week so whatever your figures are Slim and Dai
You must be in rosy health by comparison to Peter!
I think there are many other factors to be taken into account and Perhaps Slims dreadful infection kicked his low numbers into touch. Or maybe he has become a non secretor! producing false blood tests.
That is why I was asking the BLOOD MAN craig to produce some results that mean something to the layman cos they are just too complex.
We need a Pie chart something visable in the form of a cake with slices followied by an idiots guide to blood results in myeloma.
Hi Eve
Peter did 5 or 6 cycles of Velcade. Getting two DVT s as a result after the second injection.
Once he was on Tinsaparin. (clot buster) he was in no danger from the velcade as the drug is taken for 6months as a prophylactic to prevent any further clots that the velcade caused. His lungs were never checked again other than with a stethoscope because he was no longer breathless. (He has had several since then unrelated and no sign of the problem.
Cannot help with regards to bone marrow as peter has only ever had one of those at diagnosis.
But the back problem I can advise as this was his biggest concern.
Find a hospital with an osteoporosis nurse specialiast[b].Tell them that Slim is on steroids[/b] Book him ( no cost and no long waiting list iether) A Dexa test is the name of the scan that was done on Peter but its a very simple lie on a bed thing while a computer does its thing and it tell you him how damaged his bones are all over.
Following this the nurse should be able to refer you to a spine specialist.
I rang this nurse up in Newcastle to ask her who the best person surgeon would be to get a private consultation for Peters back. She in turn booked his appointment with herself and she did the referal to a spine specialist.
The spine specialist did his operation last week for kyphoplasty and he did the 1st one In Dec 09.
Not many surgeons have had the kyphoplasty training so ask around in the spinal injuries or trauma department.
the day certainly ended better than it began at 2am.
He is esconsed in his single room with en suite so Score 1 point
He is responding to the iv anti biotics Score 2 points
He had a long talk and cry with the lead nurse Score 3 points
She is arranging for a professional to talk to him about his concerns more points
He rang a while ago to say he felt better but the Diarrhoea is wining score 1.5 points
He also gave me instructions on what to tell the contractors when they arrive…. Thats much more like the Peter I know and love.
From my point of view I am so pleased he is where he is; and getting the attention and care he requires and that makes the outcome so much brighter. I am pleased I didnt have to shout after all but I am going to get the resolve to be able to when necessary.
They are not going to rely an my poor quality care by comparison to a host of healthcare professionals and all that goes with being an inpatient.
Thanks mates for keeping me company during this rough ride.
Love MIn
As it happens events overtook us, Peter started with a temp at 2 am and at 4 he would not let me ring the hospital. at 6am it was 39.3 and we had a blazing row, followed by me walking the dog.During which I rang the ward came back gave him paracetamol.
We attended early for his appointment and he was told he was staying in had a hissy fit but was finaly persuaded to stay and that is where he is now while I organise a kitchen to be delivered that should have been comming on monday.
Peter is very depressed at the moment and its difficult as he has never been depressed before and had resolved that he wanted to be in control of what was happening as his perception is people are sticking needles in me giving me this that and the other and no one asks what I want.
I say I but mean him.
He knows what is needed he just wants to be more involved in the choices and he is so tired he cant think straight.
My Im falling off the edge slowly.
Hello Sarah,
Its so nice to hear from you, I know its the DS who will do the work but I just felt I needed the Macmillan to stick the boot in and make it happen.
They seem to have so much clout and can shout and be heard where we would go round the houses and get nowhere.
She was excellent at getting what we wanted 2 years ago when Peter could not climb the stairs to go to bed or get in and out of bed, requests to our GP had to go to several offices and took weeks to do nothing while he could only sleep in a chair in the lounge. One word from her and they were here the next day. Therefore we hope she can shake someones cage.
In addition I have to admit to needing the help and support she offered in the past.
Thank you for dropping by and don't turn into a stranger we are here for you when /if you need us
love
Min
Oh Bridget
Im so sorry to hear this news what a bug ger . and the rest.
Apparently its a little knows scientific fact that swearing is effective. what at i cant remember due to altziemers !
No one knows your body better than you and your instincts are correct so make sure you always listen to them.
i dont know what the plan will be for this maybe a blast of a ray gun of some kind will murder the blighter.
Bad news is always responsible for 'downers' in our house and we have had too many of those of late, so wont share it with you all.
The sorrow of friends on here has had a lasting effect on me, so its important to stay positive and know you have a wonderful team looking after you so hopefully they can get this under control and you can get on with your interupted life again. Best wishes
Love Min
Hi Helen
Picked him up as 1-30pm he has been asleep in bed since, having had no sleep in there so dont expect him to apear much before am tommorow. Back on Friday for bloods and GCSF at 36 and again on Sunday to ward 33 so if you still in then will call on you.Hope its going well.
Min
Hi Dai,
Whilst I wait for the phone call to go collect Peter, I remembered that when he had his back op last week he had to wear the compression socks( delightful) and the nurses gave him a plastic bag to put on his foot and ankle which allowed the socks to slip on quite easily.
Hope the swelling is still receeding and the velcade side effects are bearable more importantly
Have a lovely break(holiday)
Min
Hi Eve just a quick one.
Get him to take the Dex 1st thing in the morning before he goes to the unit, It might have worn off by bed time!
love
MIn
Hi Helen
He is in 33, gets his stem cells back at about 9-30am should be going home by 11 ! my daughter and he have both asked for him to stay in but he is in a 4 man room with emergency leukemia admisssions so it is probably safer for him to be at home. Not at all happy about having to return to 36 for bloods as there are often a lot of sick people there so watch this space as I may get angry.
Hope you doing ok and the new sick medication worked well for you.
Min
Hi Meike
My husband had a balloon kyphoplasty on Friday last, this is the second time he has had one but on this occasion he is suffering from more 'discomfort' mostly in his ribs but he says its muscle pain.
Probably from being thrown well not exactly thrown but you know what I mean! over from his back to his tummy for the op.
When we were seeing the surgeon some months ago about this op, I mentioned to him the possibility of having the most recent form of kyphoplasty where the balloon is left in place as a safeguard to leakage.
He totaly [i]poo poohed[/i] the idea and said absolutly not. >:-(
When I collected Peter to go home…. Lo and Behold he had had the new type. On one of the two they did.
Which is evident by the fact that the wound( I have to put clean dressing on) is a single hole with one stitch.
😛 and he has a picture frame drawn on his back. Whats all that abut then but he is happily saying he is no longer feeling lop sided or leaning forwards
Day 3 now and little by little the muscle ache is receding .
Shotrly he will forget about it when the agony of melphalan tommorow is infused.
Got a bed and going in at 3-30pm today
Regards
Min
Hi Craig,
I am just a carer of a MM sufferer who in 2 short years has undergone CDT therapy followed by a stem cell transplant and more recently a relapse with velcade and revlamid therapies.
Not being the patient I don't feel qualified, but i think there are a good many people who would love to hear more and have more input and indeed information regarding blood testing and results.
Perhaps we could nominate Mr Eric Lowe or some one else from the 'office' who could represent the patients and carers and ask a variety of questions on our behalf.
You have to understand that those people who are currently undergoing treatment cannot make plans as far ahead as November !
Because with the best will in the world they simply do not know if they will be well or undergoing a treatment which makes them feel like sh***
A newly diagnosed person would probably be getting ready to undergo a transplant in Nov.
One of the many questions I would have wanted to ask at the outset was-:
Can I have a permanent print out of blood results. Having got these in the early days, I had not got a clue as to how to interpret them, what all the letters were short for, and more importantly what 'normal ' was in relation to those results.
I might have like to see a chart that was easily understandable as hearing from a Dr that Light chains were over 5 thousand meant absolutely nothing at all to the uninitiated.
Furthermore I would have like to see a chart that showed what if any progress was being made by certain drugs and which of those drugs was producing the lowered figures.
That is not to say I have no confidence in the Dr it is simply a record of events. Consultations are over in the blinking of an eye and generally I will remember parts of the consultation and my husband will remember something else but between us we get sidetracked and lose site of the bigger picture which if presented in an easily (layman's terms) presented format would make all the difference as all Haemo patients are always awaiting blood results. Like Dracula!
Maybe a questionnaire of the most popular or frequently asked questions could be presented to your meeting with the minutes that appertain to those questions being printed on here?
Regards MIn
Hi Roz
It all looks superb, someone has put a lot of hard work in and you have obviously put a lot of thought into it.
Low maintenance in order to manage it. Bring on the Birds
I love your garden bench, Michael will be watching you sitting there, and possibly sitting beside you silently.
Love MIn
Nice one Helen, Mine will be bacon and tomato! See u monday
Peter is sore but sleeping, Im off to the shops for some treats.
Min
