Dear Dai
I am so very pleased for both you and Janet, what a blessed relief it must be. PN well you can put up with that for a very short while, and it will all get right.
As long as you can still plonk your fingers on the keyboard you can continue to amuse bemuse and abuse us. Just kidding about the abuse!
I am not surprises your in your bed, Peters Hgb was 8.2 on Sunday when we went for platelets (yes we visit the hospital on Sundays too, no rest for the wicked.) On Monday they gave him 2 bags of cells. which makes him nice and rosy again and means I can turn the central heating off for a few days in flaming June as he is not so cold. Joy of Joys.
Your on your way boyo and brilliant news… I notice we you and I and probably a few others use the royal [b]we[/b] when referring to results etc. WE really are in this together therefore she is allowed to jump the gun….. Official. What car did you order jag, jensen intercepter or something more sedate? Mine wold be a mini…………
Hello Gill and Steven,
I think I know just how Steven feels as Peters mega melphalan is now kicking in with all the dreadful side effects.
I sincerely hope he starts to pick up soon and you can get off to France and recuperate.
Before you go ask you medical staff for a referral to a pain specialist who can get Stevens pain under control. I can hardly believe they have let him leave hospital in so much pain. But I imagine all he wanted to do was escape!
Macmillan nurses are really good at getting to the bottom of pain and prescribing medication to combat it.
I sincerely hope life will return to 'normal ' for you both soon, as I know you will be exhausted too for different reasons.
Best wishes for a speedy recovery
love Min
Oh Angelina,
What a dreadful hand life has dealt you and John, and all the many other people on here who have a loved one with MM. Its particularly poignant when young children are involved.
They can be very matter of fact and I am sure they will agree with what you plan. They are your future and they are what matters. Go ahead and do it and don't lose any time thinking about it.
My heart goes out to you and any parent in your position. Life is so bloody unfair. I admire your way of dealing with it and sincerely hope it will be some time before you have to publish it to the children.
My daughter bought me a book from Tesco on line of lots of personal photographs made into a bound book for my 60th Birthday. You down load a piece of software and send the photos on line in the order you want and the end result is very professional. I would highly recommend it to anyone as a keepsake that will stand the test of time.
It resembles a quality illustrated book and if you leave some blank spaces you can write on it.
I am sending you hugs ((((((( and hugs))))))))) as I think you and yours need them right now. I have been feeling really low today and Peter too and your post just puts everything into perspective. We have seen out children growing up and that is a blessing.
All my Love
Min
Hi Bridget it was the 1st drug for his mm he was prescribed by a pain specialist nurse, and he could not get away with it. He prefers mst 10 mg or 20 mg and tramadol combined. He hasn't left his bed all day and hasn't had any…Says if he is not standing up he doesn't need it… Might just tie him to the bed now!!!
Hope you find something that works soon. Have you tried them with a hot drink? work faster.
Low dose is obviously not sufficient by the sound of things partiulary with all that has been happening in your life. Try them again when your in a calmer period.
It is hissing down here but it is race week and its a certain bet it will rain now and during wimbldon Just as well as I have to cut the grass or not if the rain keeps up HE HEE
Love MIn
Hello Jo,
It comes from having been a policewoman and writing statements! Old habits die hard.
As for Peter he is sleeping a lot, as eve suggests probably has acid reflux. Feels like sh*** lost loads of weight. Weak as a kitten …. Cant interest him in most food due to the indigestion thing, although he is hungry. He had no adverse side affects apart from hair loss from his last melphalan. On this occasion he has got them all with a vengeance( result being this is like the first time for him) to date his hair is intact!!! cant remember when it falls out but by the time it does he will be really depressed as he hated it the last twice it happened.
I am just so pleased I am no longer working as I would not be able to cope again.
Thanks Min
Hi Heath,
I was really interested in your post, and it has left me needing to ask more questions of the healthcare professionals. Before my husband started the treatment he is currently on we were called in by the consultant who told us Peter had plasma cells in his blood. I did not understand what this meant and when asked I was told it was 'the cancer' He went on to say Peter had had them before he commenced Revlamid but he did not mention it because he thought they would respond to Revlamid which they did but returned again.
I now know I need to ask some more searching questions about the type of plasma cells they were/are and if they have gone again!
I am sorry for your loss Heath, but comforted by of the extra time she was able to gain with you. Thank you for a really interesting post
Min
Hi Jane and welcome,
Im a carer for Peter who is currently taking Thalidomide for the second time after break for a transplant and velcade and revlamide. It worked wonderfully the 1st time he was on it as a 1st line treatment along with dex.At that time it was discovered that he had crushed vertebrae too causing the hunched back or kyphosis as it proper name. He was given strong painkillers prior to being given Thalidomide and he was seeing things too, talking to dead people and not making a lot of sense.
Don't worry its most likely not the thalidomide that is causing it, it most probably is the pain killers for her hunch back… Im assuming she is on pain killers. IF not then I am absolutely incorrect. and I apologise for being so forward. Try and get Mum some that are not so strong or take less of them if she can cope with the pain and the things she is seeing should go away. But do not withdraw them without consultation as its dangerous.
Thalidomide is fine as long as your not pregnant!!!!!LOL it does what its meant to do, but some people cannot tolerate it. Best time to take it is late evening when she gets in to bed as it helps to sleep it off and may prevent a fall as it makes you drousy.
Make sure if she is on Dex that is taken 1st thing in the morning. sleeping …. Well Peter is doing nothing but sleep at the moment, anywhere anytime. Its the result of poor blood content due to the Thalid working its wonders. Is your mum on a high dose? perhaps she could get it reduced for a while or take it alternate days? Ask the nurse specialist to find out if its possible. Just because your on this drug does not mean life has to stop as you know it, but for a while its certainly on hold until it gets the disease under control.
Constipation needs medication, don't let it go without something to help as Thalid does bung you up, as does the morphine or pain killers she may be on?
Drop by and let us know how she is, and you too. Carers need a hand too occasionally. Even if its just to cheer you up!
Love MIn
Eve when all else fails, buy some suppositories from the chemist. If they fail too see the Dr!
They are just glycerin and something or other but they worked on Peter after a mammoth 4 days and lots of pain.
Love MIn
Hi Norman
Try this one… http://www.insurancewith.com
. I used it in April and got a quote down to £130 for both of us to Cyprus from nearly two thousand with other companies. Peter was on Revlamid at the time. They call it a Maintenance therapy drug for insurance purposes!
The woman who established the company had breast cancer and wanted a holiday and could not afford the insurance to travel. I found them via a Sky News item.
They know all the questions to ask about your condition and it was very reasonable.
Min
You have been busy Dai, what a shame and how did you cope with the embarrassment.
Nothing like a good clear out to give you an appetite.
Peter was the exact opposite on Velcade and had the runs constantly needed to take tablets for it it was so bad.
Just re enforces the fact that your all different in how you react to the drugs. But now like you he is bunged up, on Thalidomide. Figs and prunes coming up. Washed down with custard and a high protein powder.
Enjoy your week off, have a Guinness it will do you good or was that Mackeson?
Min;-)
Ok Today
Two pints of blood please. Don't mind if I do. (Says Peter) Actualy it was two units not pints
He was feeling lousy today had clinic…. light chains from last wednesday Five thousand and something. Didn't hear the rest just happy with that. that was 9-30am we actualy got seen quick for a change. The day ward now that was different matter. Waited an hour for a bed. then the blood wasnt there. plus had a heck of job finding a vein. I left and went home to do some housework. Neutropenic man at home and need surgical cleanlines>>> of the Minnie variety LOL
The hospital is only about 3-4miles away. Must log it sometime to find out. Anyway its 15minutes
Back home for about 3pm a new man (I wish) pink cheeks and feeling so much more alive than washed out. 1st time ever he has had a transfusion. He is still awake too which is a record for the past week.
Oh and the Thalidomide continues. double doses of that tablet to protect his stomach from ulcers. Back on Thursday for more platelets.
Lost his appetite, everything tastes metallic.. Ive told him to wash his mouth out with pineapple juice but he hates pineapples!
Oh, and told specifically not to cut the grass as its dangerous… not that he has the energy but an interesting fact when your on chemo. Dr did say why but I did not catch it all.
Day unit was manic today with emergencies… must have all been cutting the grass.
PS used the term stem cell rescue today… pause for thought when I heard it. But will be in abbot 3 weeks time. IF he has recovered from this lot by then. Don't want the blighters to start growing again.
Love Min
We were at the day unit today at 9-30am.
He has a mild infection of some kind, don't know yet what it is but they sent bloods off for a culture.
His WBC is down to 0.47 neutrophils 0.01 platelets 5. He was given a bag of platelets a new kind of GCSF injection and a box of strong anti biotics. He fought of the suggestion to give him two bags of blood but will have them tomorrow. He also fought off all attempts to keep him in!! Mind you they had 3 emergency admissions this morning so no beds left on the haemo wards.
He is generally washed out and totally neutropenic. But no temperature now. Tommorow is a clinic day and we will see how the dreaded light chains have reacted to the melphalan and thalidomide soup! Judging by the other blood results it should be good as he has never needed blood ever before now. Made it home by 2pm
Onwards and Upwards in Toms words. The counts that is
Love MIn
Sunday was not a good day, he had a long lie in and woke up with a pain in his tummy, now thinks he has a peptic ulcer, lots of belching and heartburn and indigestion..
Following which he had lots of nose bleeds but stopped when he lay down.Yesterday he had swollen legs ( not today though) Very very tired, felt very cold and had an ever so slight temperature. . Following which he is feeling very nauseous.
Clinic day on tuesday but if there is no improvement by tomorrow will have to take him in. The chemo is obviously finally kicking in. Hope the GCSF starts to work overnight… mmmmm Looks like the planned unplanned in patient thing will be Monday. Dr did warn he would probably have to go in if he bottomed out. Bloods wise! so we are expecting it. Peter being Peter just wants to stay in the comfort of his own home and no hospital food or acquired infections.
Need to put my bossy hat on tomorrow,,,,,,,,,,,,,
Watch this space
Min
So sorry Bridget,
My thoughts are with you and your family at this sad time
Love Min.
Good Find Jet, very very interesting. Thanks for that. How are you doing these days…Must be getting near to transplant time? Hope its all going in the right direction for you
Min
