[mhnevillParticipant]

Hi everyone

When I was in Clinic last week I met an elderly fellow MM sufferer. He had an interesting take on things. He didn't want to know anything about the disease and was just trusting his Consultant. After all,he said, it isn't the MM that kills you.

I've thought about this, and of course he is right. I think of two younger friends I have lost on here, Bridget and Outdoors Paul. It was infection that took both of them off far too young. Perhaps we need as much research in the fighting of optimistic infections as we do the actual dreaded MM.

Just a thought!

Keep as good as possible everyone.

Mavis xx

[tomParticipant]

Hi Mavis

That Fella is correct am sure, I also trust My Consultant and am sure many of you know I am Happy when he is Happy 😎 Do I know what my PP levels are ? do I know if My Platelets are good :-/ do I know if my Bloods are Ok :-S do I know am still in remission :-0 Too true I do Why ?? Cos My Dr (Dr Jalihal) is smiling and introduces me to his trainee Consultants as the Mr Lappin that Tells me we are doing great 😀
He's Happy am Happy 😎

Enjoy the long week end.

Love Tom Onwards and Upwards x

[dickbParticipant]

That reminds me of the saying, jumping off a building doesn't kill you hitting the ground does.I think we still need to take an interest and question our consultants to ensure that they are on the ball and not just going through the routine. After all, it is our life.

[DaiCroParticipant]

I tell everyone I meet that the greatest killer of MM is infection. We have to monitor the efficacy of treatments and the side-effects of medications but it is in the picking up of infections that most danger lurks. :-0

Perhaps this is why I get slightly paranoid about visitors with lurgy… be it ever so mild. I still often think of Bridget and I thought Paul would be with us for years Mavis… but such is the way of MM and infections, so I agree wholeheartedly with your statement:

[quote]Perhaps we need as much research in the fighting of optimistic infections as we do the actual dreaded MM.[/quote]

Especially those related to chest/lung infections.:-|

There are ghosts around my bed… I see them often from the corner of my eye… but I do not fear them, they have not come for me… just visiting, then they go on their way… gently, quietly, tranquilly… at peace.:-)

Dai.

[eveParticipant]

Hi Everyone

Danger lurks,wish I new earlier what I know now8-)

Infection and damage by infection has always been the biggest worry!!!
Why are you not told steroids mask infection?
I was told no one can prepare you,for infections plus the damage they can cause!! So wrong,always keep antibiotics in the house,better save than sorry.
Why not give every patient on chemo a prevent does of claxane or now there is a new pill Rivaroxaban instead of injections,cheaper than injections.

Slims nuets are 0.3 platelets 33 it is so important that carers are aware of the bloods,and keep up to date on new treatments,I have asked for something called shots to help Slim with nourishment ,this week I finally received them,dietician said they did not do them,well I have them now,if someone says no ask why!!!!. Be active in treatment,Eve

[tonyfParticipant]

So right about infections, there I was happily buzzing along, woke up Friday morning, temperature 39 plus. Straight down to the assessment unit at Leicester Royal Infirmary and here I am lying in hospital bed, being pumped up with antibiotics. I am bored silly, temperature has stabilised, but I have to stay the course.
I bet they will not determine what the infection is, and I have no idea.
So, it's another bank holiday weekend in hospital!
Gotta keep smiling
Tony F

[CarolsymonsParticipant]

I am also dealing with this temperature malarkey. Went to A&E last Sunday with temp of 38 as instructed by haemotology nurse……blood tests, urine, chest X-ray, 1 bag of saline, 1 bag of antibiotics, neutrophils 3.4 so sent home. Monday at haemotolgy day ward for bisphosphonates temperature again 38 (neutrophils 2.9) as it is again tonight, even though I have been on augmentin since Turesday….so frustrating. There is no point in going to A & E…last Sunday they told me how well I looked! So it's paracetamol and another augmentin at 10 pm. I don't understand why they don't seem able to locate the source of the infection after so many tests. Husband (from Bosnia) tells me I have a temperature from sitting in a draft but as an Aussie I don't believe that story! Only worry is that if I stil have a temperature come Tuesday they probably won't restart the CTD regime and I so want to demolish those last 5 paraprotein gremlins.

Carol

[DaiCroParticipant]

Hi Carol

These Bosnians… tut, tut… anyway, don't sit in draughts.;-)

Dai.

[tonyfParticipant]

Hiya Carol, that sounds like a real saga. I wish they could isolate the cause of these infections.
At Leicester Royal there is a specific assessment unit that we can contact at any hour of the day or night. When you arrive they do all the tests, then take whatever course of action needed. It's a good system and it works well.
I thought that all hospitals had something similar!
Hope you can get that temperature down ready for next week.
My pp has been at 1.8 since my SCT last February, so fingers crossed for you.
Regards
Tony F

[DaiCroParticipant]

Hi Tony,

We have a similar unit at the City Hospital in Nottingham… I've spent many a nice few Bank Holidays inside. The QMC also has one… I know this because I once spent 5 days there and it wasn't until the 4th day that I found out where I was… I had been submitted with a temp: of 39.6 and thought I was in the City as per usual. The two units look nothing like and I was completely compos mentis within 12 hours, so I have no excuse.8-)

Dai.

[AliParticipant]

Hi Guys

My Mum has just spent the past few days in hospital, temp 39.1 when admitted. Infection source unknown. I fetched her out this evening. These infections are such a worry 🙁

You are in the best place Tony, better to be safe, but hope they set you free soon 🙂

Love Ali x

[andygParticipant]

Hi all
When I was diagnosed and my consultant ran through my likely journey – chemo, remission (got that wrong!),SCT ( got that wrong too!), relapse then return to chemo and start all over again. I was told after all the drugs and options ran out that would be it! I asked the consultant what would get me in the end and she told me it would be most likely an infection that I couldn't fight off. So I've known since diagnosis the danger of infections and do my best avoid people with coughs colds and sneezes and my family and friends know to keep clear if they're ill.
As most of you are aware my neuts are very rarely 1.0 or over so I'm neutrapenic most of the time. Having said that I still go out to pubs/clubs and have holidays. You got to live haven't you 😉
If my temp stays above 37.4 for any length of time I have to ring into the haematology ward directly whatever the time of day. I then either go to the day unit or they arrange for me to be admitted – because infections are dangerous very dangerous it's no time to mess about with GPs.
Latest Neuts 0.8 :-S 4 weeks till Greece 😎

Every days a gift
Make sure you use it

Andy

[tonyfParticipant]

Morning everyone thanks for the replies, encouragement and discussion, it's what makes this forum great.
Dai, I knew Nottingham had a good system, does it work well, should be copied by all the big centres.
Andy, I can't out do you mate, I agree live it, I'm supposed to be off to Majorca next Sunday!
Carol, stay out of the draughty Bosnians way! Haha only joking, lass.
Regards to all, you lot are great, thanks for being there.
Tony F

[jmsmythParticipant]

Hi Tony

We have something similar at Belfast city Hospital. They are available 24 hours. If Frank is feeling unwell he calls them, tells his symptoms and they speak to a doctor and are back to him within 10 minutes. If he has to go up there is no waiting he goes through to the Unit and tests and examination are carried out. I can't speak highly enough if the team there. They are excellent

Tony have a great time in Majorca – it is one of my favourite places.

Andy enjoy Greece. We are booked for a cruise 13 Sept

I echo Tony – great bunch on here 😀

Take care
Love Jean x

[BADGERParticipant]

hi Mavis
good to hear from you I quite agree about infections but we cannot be on anti'B all the time as we will lose any protection they might give us so don't know what the answer is I hope you are keeping well God willing:-)
love Jo

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