[Anonymous]

Hi everyone,
I thought I'd be like Shakespeare's apprentice but on reflection Inspector Clouseau would be more appropriate!
Until I started reading your forum I was unaware of paraproteins, light chains, etc etc!
Marc goes every week to have blood tests at the hospital and see his Consultant and Macmillan Nurse. We are always told " your blood results are fine ". We are never told what "fine" means and any questions I have are met with a glare, a 1/2 answer, and back to Marc with a lovely smile!
This usually ends with me crying like a baby on the way to the car, Marc trying to comfort me, I then feel guilty because I should be helping him….. and round and round it goes! God I hate fridays!!!
Now back to the question! How on God's earth am I to get his blood results from a Consultant who acts as if I'm an itch that won't go away and a Macmillan nurse who is better suited as a sergeant major in a boot camp!
Hope you can picture our friday excursions! To make matters even worse/comical/tragic ( Shakespeare again!!) As I've already told you I'm in a wheelchair and Marc tells me the only time I need to push myself is when he's dead and buried. On the surface that sounds lovely dosen't it? Now try it when we enter a consulting room with Attilla the Hun and side kick watching with utter disdain at the cheeky cow in a wheelchair being pushed by the "patient" who can hardly walk himself!!
God I feel better after that rant!! Sorry you are all receiving it, but know I still love you all.
XXXXXXXXXXX

[bandityogaParticipant]

Hi Pauline

I have asked for a print out each month of Ian's blod results. I am not too sure what I should be looking for but will get help on this site.

Take care and calm down.

Maureen

[eveParticipant]

Hi Pauline

Welcome ,climb abroad the roller coaster,because being a carer or patient that is what this ride is about.

First Pauline we need more info before any one can help you,why is hubby going every week???
What chemo is he on????
Has he got full blown Myeloma or smouldering???

The best advice I can give is arm yourself with knowledge,read up on Myeloma look at back issues,a must is you get on the telephone and ring Maggi or Ellen and talk to them!!!!!!:-) They will send you booklets all about Myeloma,it might seem hard at first,but you will soon pick up on the medical terms.!!!!

Get on the phone!!!, Eve

[MariParticipant]

Hi Pauline and Marc,

I am sorry you are having a tough time with your health professionals. I agree with both Eve and Maureen. There is some excellent information on the website that explains what all the possible results are, and gives you the acceptable ranges for each reading, so you can tell when a reading is too high or too low. In the three and a half years that we have been living with this disease I have made it my business to know what Steve's results are, and what they mean. I know things now that I never expected or wanted to know.

I understand that it may be very difficult to communicate with your doctor if you feel that he/she does not respect your need to know. I think it is perfectly reasonable to ask what Marc's paraprotein levels are and whether they are rising or falling. Similarly you may want to know what his haemaglobin levels are, and maybe platelets and neutrophils. I am sorry to use all the technical terms but these are factors that all of us living with myeloma need to understand, and also to be aware of the implications of raised or lowered levels of these results.

The section on the website that deals with these results is very clear and easy to understand. Take some time to read it, and maybe talk to the nurse on the Helpline. I am sure you will feel more confident when you next talk to your doctor or Macmillan nurse.

My husband's consultant always writes a letter to his GP after a consultation and this lays out his more important results and describes what course of action has been decided apon after the consultation. We always get a copy of this letter and that helps us understand what is happening. I believe this is standard policy in our health trust. Maybe this is also something you could investigate with your consultant. The days of patronising patients and keeping them in the dark should be long gone.

I am going to go out on a limb here, and I hope you will forgive me, I dont mean to offend you. I wonder if you would feel strong enough to take a deep breath and to point out, very calmly and gently, that you would like to be active partners in the management of your partners disease and would be grateful to be kept in the picture with regard to results etc.

Good luck,

Love Mari x

[jmsmythParticipant]

Hi Pauline and Marc

Very good advice from all above. You have every right to know what the results are. I asked MMUK for one of their diaries. To me they are invaluable. It is decided into sections e.g questions to ask, appointments, proper ranges of bloods and a section where you record the results. Mari is right Pauline you have to me fore forceful – in a nice way. When we first started seeing consultant she talked to Frank and ignored me. I told her that I needed to know blood results and now I go I. Armed with my diary and after she has spoken to Frank she tells me all the results and asks me if I have questions for her. Stick to your guns Pauline

Best wishes
Jean
Ps if you want a diary just give them a ring

[HelenParticipant]

Dear Pauline
I think I second everything the others have said, But I am a patient and I see things from a different perspective. I hope it doesn't seem harsh but here goes!

I don't take my husband to consultations…… I need my wits about me when I go and I don't want to be looking after him and his needs too. I also don't think it is a partnership thing , I'm me and I make my own decisions, he understands and will come with me when I let him but I'm not ready to lose all dignity yet and him being there is part of that.

I don't want him to ask questions that I'm not ready for the answers yet. Sometimes there is only so much information you can take in at one time, especially in the early days when you are trying to come to terms with things. Medical staff are aware of this need for relatives to know what is going on and patients being a bit ostrich like so that might be why they are a bit hostile. They will try to go at your husbands pace, not yours.

The carer has a tricky path but being the patient has to be worse, you have the pain of watching the people round you suffer through no fault of your own and also the pain of the condition and its treatment and trying to appear as normal as possible for as long as possible when all you want to do sometimes is curl into a ball and disappear.

If I were you Pauline, I'd write a list of the questions you want then ask your husband to ask them , not you. He must ask for all results and letters if he wants them,…. Entitled under freedom of information then you can get a better idea of what is going on.

I hasten to add that I love my husband very much but in this matter we do not discuss,…. I dictate, it is too important for my physical and mental health for me to relinquish what little control I have over my health decisions. Above all else, I have to trust the people who are looking after my treatment, so I don't want anyone else interfering, however well intentioned.

Hope I didn't set the cat among the pigeons here! Good luck
Love Helen

[rebeccaRParticipant]

Thank you Helen – I thought I was the only person who went to chemo/consults alone – my specialist nurse thinks I am very "insular" but I cannot deal with this fully focussed/strong whilst considering the needs/wants of my partner as well. Sometimes it has taken me weeks to ask certain questions – at a point when I know I can deal with the answer – so I don't want anyone pushing info on me when I am not ready for it and vica versa. It is a difficult balance to achieve but I think my partner secretly prefers me doing it this way as he has his own struggles re. our situation to deal with and perhaps being at work instead of the hospital is a welcome relief – tho I know he would come if I wanted him there.

[BADGERParticipant]

Hi Maureen

sounds horrendous can you change your hospital and consultant it sounds like you should what are these people about where i go i get to see graphs of all my results you just need to know or you feel in limbo good luck
Regards Jo

[Anonymous]

Thank you to everyone who tookthe timeand trouble to write back. I have 'phoned the helplineand they gave me lots of advice of how to ask and understand the blood results. I would not havethought to ask them so thank you to everyone who told me.

[PerkymiteParticipant]

Hi Pauline,

Your questions have been answered it would seem and some very good advice from both perspectives I think. I just wanted to say how much I loved reading your "rant" great one well done 😀 :'-(

On the question of partners in or out I am in the "in" camp. Mo and I tend to do all things together anyway. We both attend the meetings and we generally discuses what we are going to ask before we go in and usually I will do the asking but Mo takes part in any conversation. It all feels quite natural.

Kindest regards – vasbyte

David

[MariParticipant]

Dear Helen,

Thank you so much for your perspective. That really needed saying, I think as a carer I am so caught up in not losing Steve that I forget his needs.
When he was first diagnosed, I needed to know everything, he didn't but he knew that I knew. He would not even come to this website, he still won't. Over time he started to ask me and he calls me his head of research. We have an unspoken rule, I don't tell him unless he asks. I dont go to all his consultations, even if at times he has needed me to physically get him there. It's a very difficult road to tread but I am very grateful to you for pointing out that it is indeed the patient who has the right to know, and only the patient.

I hope things are going well for you, i have been away so long, I feel very out of touch,

Much love, Mari xx

[eveParticipant]

Hi Pauline and Everyone else

Helen has put a new perspective on consultations!!!
Do you think it's an Alfa female thing,? As carers we natural want the best for are partners,so when we see are other half struggling with Myeloma plus what it does to body and brain,is it only Alfa females who then feel the need to control the situation?
Slim and I spoke about it from the start,he decided he would just like to concentrate on going through treatment and I would learn all I could.the pact was made,the consultant informed in writing,are journey began. We keep the children informed of any important news,and we talk about any issues that arise from this. Close friends I feel who understand the situation also.the rest of the world Slimis fine,because most people relatives and friends do not want to know,it's dreaded Cancer god forbid you upset there day:-)

As for Alfa female being a patient,well Helen I now see a new perspective !!;-) it is the other side of the coin,but if I was the male in question or the hubby,I do not know if I could cope with it.

On a personal level I nor my family have any reason to trust the SE Kent Hospitals,and we do not,with very good reason,so I have a vested interest in making sure Slims treatment plus carer is explored and done to the best of my ability.
During the 2 1/2 years I have found mistakes made nearly costing Slim his health.
So yes I do think it is important for a carer to be involved,as time progresses and you may need that support ,!!!!

Thanks again Helen it does help and open new avenues,my daughter said may be because Slim is the patient and he seems so unconcerned about his treatment,and I am asking important questions and feeling there not getting answered,???
He is the patient,! I am just the person who wants and cares that he has the best treatment. And no mistakes are made. eve

[VickiParticipant]

Hi all

Given I am mrs 120 questions and event more what if this and that Helen has made me think. Like Mari I am so scared and even more scared of losing Colin I have not thought whether actually he wanted to know the questions I've asked or not and like David we have a game plan before we see the consultant and I never stick to it! Mainly because I am so psyched up by then it all comes out in a rush. Takes all ways and all people…..bloody mm:-( sorry for swear word

Vicki and Colin xx

[HelenParticipant]

Ha ha Eve Alpha female indeed, it takes one to know one:-)
And Rebecca, I'm glad to be of help, we all have to take steps on this journey in the most comfortable way for ourselves, we need to be a bit strong to hold ourselves together and wear the shoes most appropriate.
As you know by now my varied nursing career finds me working in a psychiatry setting now and so I'm very aware of the CBT and counselling approaches which people need and use. Insularity is a great protective measure, I use it a lot and am known for my 'ostrich' approach when things get a bit tough then I ask for all info when I'm able to take it in. Ours is a lonely road, I get a lot of help from this site and some of the ladies in our mm support group.
Mari, Pauline, Vicki I wonder if it is a gender thing, women are generally the carers and I'm caring for my lot by not exposing them before needed to anything too horrible. You are all caring for your boys in your fierce protective ways, just keep going, they are very lucky chaps.:-D
Love Helen

[eveParticipant]

Hi Everyone

Vicky in the old days saying bloody would not have,allowed you to post your comment,I got caught all the time,kept looking at post and thought what the hell had I said?:-/ (Hell) was the no no word,.So you would have been damned for bloody. You naughty girl.:-S

Helen how can you be so cruel me an Alfa female,lol,truthfully it is interesting how we see are selfs,and how other people see us, I just see myself as a person who wants the best possible care fore her husband.:-)

Well Pauline you must have read all the comment?,To your own self be true,that is the question,To be or not to be.Eve

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