Hi Sarah,
I empathise with how you must be feeling. When Peter got his bad news it was devastating for both of us. But there are other options out there and going back wards to CDT or in Peters case MDT is the way for us( the royal we here!) having tried Revlamid which was good, but not good enough for the aggressive cato mm
Given the past few weeks when he has been really ill and a pain to live with, he is doing really well now. Anyone would think he was on Dex now he is so snappy but its frustration as much as anything
Melphalan seems to have done the job it was meant to. We were at a clinic and nurse suggested some soothing alternative treatments so when he was having his blood transfusion yesterday he had Reiki and kneck and shoulder massage. Came home in a lovely mood! Arrangements have been made to go to a hospice and have some back massages regularly too.
I imagine Gordon is Equaly frustrated having gone through all that 'hassle' to hear it hasn't worked. Frustration doesn't quite describe it but cant swear on here; I am sue you know what I mean though.
Undoubtably you will be feeling just as angry as he is, worried too. Tomorrow will be better. If you have managed to get any sleep.
Enjoy your Yorkshire show, hope its not raining or it will be a quagmire, its rained for 3 days up here so far.Bring the BIG wells.
Love MIn
Brill Keith
Have a good break, see you there probably as Peter is going in about the same time
Love MIn
Hi Gill
Welcome to the merry band of MMrs. Sorry you find yourself here and can understand entirely how shell shocked you must be. B
You about to step onto a roller coaster and might feel like throwing yourself off from time to time but bare with us/ it. We may not have all the answers but someone on here will be at the same stage as you are or just ahead of you and with our shared knowledge and your curiosity you will know by now its not the end of the world, look at it as part of lifes rich tapestry.
Your on a steep learning curve, and in no time at all you will know all you need to get by on the mixture of whatever tablets or medication that you have or are about to be put on.
Most important of all is to stay positive and look forward, set yourself small easily achieved goals. Like not losing your temper at the length of time you sit around in hospital waiting rooms. LOL Take a note book and pen write down all the questions that will go out of your mind when your sitting in front of the consultant. Make little annotations that will jog your memory when you get home to be able to recall what was said.
Often a nurse specialist will accompany you in the consultation and she/he will be able to interpret for you as the terms used are alien to begin with. They will also be able to turn the the consultants words into laymens terms until your familiar with them.
Good luck on your journey and keep us informed when your able or come and have a moan if needs be. Scream if it helps we have all felt a little of what your feeling. Though not me as I am a carer for my husband diagnosed 2 yrs ago when he was 56yrs
Im sure your husband is just as fearful as you are and about to join you on the roller coaster. We are here for him too and family if they need support.
Regards Min
I think anyone on Velcade dex/Revlamind and dex deserves some sympathy and understanding. Compared to Thalid they are good but the downsides are worse. I have watched Peter try to overcome the side effects of V&d and R & D and he was struggling constantly with side effects.
He went back on Thalidomide the other night… after a big break whilst in patient and he slept like a baby. No side effects to speak of (apart from wind) AND he said he feels stronger today.
We had a chat with Consultant today and he will stay on it after his transplant due in about 5 weeks. Knowing what all the other stuff did its a much gentler form of medication. Especialy as he does not take dex with it.
They always printed off his bloods for the nurses to read to decide what to do next and we didn't bother but now I insist on having it when they are finished with it. They have it on computer for permanent, normally I wave his myeloma uk diary and tell them need to fill it in.
Nice are the folks to blame, Drs hands are tied by what nice tell them.. I used to find the same thing in the police force, no one was allowed to use there common sense and or experience they had to follow guidelines or else.
Guidelines drawn up by ladder climbing individuals who know all the theory but have never been around long enough to practice it… Just look at the ever younger chief officers, and indeed younger consultants
But we have all been around long enough to know that some young bright spark will come up with the innovative idea of using common sense and it will go back to what it was.
Then they will take credit for being innovative by going back to the way it was!
If only life with cancer was that simple
Get your novel out and the mental challenge may tire you out enough to get some sleep.
Min
PS Dai I am a novice on my mac and cant imagine how you get music out of it, of your own making I mean mine just plays CDs I have garage band but not a clue how to use it.
Hello Dai,
Peters time on velcade was reasonably good, except for the time it gave him pulmonary embolisms. He managed to go to work while on it, (Revlamind made him very ill) But on his visits to the day unit depending on his bloods and his responses to questions he frequently saw the Dr.
I am sure if you ask next time you are in they will get the Dr to see you, it may be that you just need a rest from it for a week or so to gather your strength and energy. HG being low may make you very tired. Do they tell you or fill in your little red book every week so you can chart your own progress? I am not talking about the light chain, just the red blood cells and haemoglobin etc. If you can see your at 8 or below its not surprising your tired. Peter was 8.8 today and is going in tomorrow for 2 bags of whole blood. Sometimes the staff are just too busy and these things get overlooked. Velcade is a chemotherapy after all and chemo makes you washed out.
Hopefully you will pick up soon, lots of vitamin C will help to make iron I try to keep kiwi fruits in Peters diet for that reason
MIn
Pregabalin, I remember Peter shaking with that stuff, it was awful turned him into a slavering inert geriatric. It took a long time to get his mix sorted but on a weekly basis there was something new to try.
Pain is awful to bare, my little sojourn in the pain stage was my sciatica and that was bad enough but at least I knew it would go away in time. You don't have that assurance but perhaps its time for more intervention of a different kind. Reiki or acupuncture, in addition to the drugs of course. Does it get any better when you take your dex? or after you have had an infusion of zometa?
I hope they sort it out, perhaps a few days in the hospice will help them to get it right quicker? A friend of mine with a brain tumour went in just for 3 days so they got the mix just right and were on hand to monitor it. She was sorted by the time she got home.
Peter is going to ask at clinic tomorrow about his kyphoplasty which has been delayed since December,when he relapsed from his scat. He is getting better daily so bloods must be on the up finally.
Love MIn
Today I had a day of pampering at the hairdressers and got some more of my long hair shorn and Peter had a day of housework, followed by some sunbathing. Progress at last.
Last monday was the day he came out of hospital, so one week on and he has got his small dumb bells out to improve his arms strength. He used the hoover& put the washing machine on and had a big lunch. Few more cans of spinach and might have my old man back. Started back on the Thalidomide yesterday.no dex but this is defiantly and improvement.
As Tom says onwards and upwards now
Min
Hi Angelina
Im so pleased Johns short visit home was successful, I pray that he will be well enough in short time to get home permanently, shame the diahhorea came back, I expect it was the excitement of going home that did it, and no doubt he had been awake all night anticipating going home to cause him to sleep when he got there.
Poor lamb. Im wishing he improves soon, and your able to look after him once again.
Love Min
Aw Kay
I feel for you, the loss of hair is a monumental event. i remember shaving Peters head in February last year and crying as I did it, after his 1st dose of melphalan, for harvest it was just growing back in May when he had his 1st sct so more shaving needed.
Last Sunday he was in hospital and I had to take in the shaver and do it again. It was not so momentous or frightening this time. But the white chemo bare head is a stark reminder of cancer. Might get the boot polish out while he is sleeping and darken it down a bit, or it will scare the grandchildren LOL. Wigs are not on the menu for men. But good luck with yours an opportunity to try a new style and colour.
LuvMIn
Hi Bridget,
How are you doing on the new painkillers? Better I hope.
The man gets stronger each day but right now he is worn out with watching the mens finals. while I have been acquiring a tan in the garden.
Today was a breakthru as he made lunch for me!!!!! Only a sandwich and crisps but beautifully served and cut. I know he can do it when he wants to, and he took the dogs out this morning so progress at last.
Now if I can only get him to eat what I put in front of him we will have cracked it.
the truth is I cant remember him being this bad the 1st time or I was so stressed it didn't matter. Need to get some fat on him or will have to buy yet another wardrobe of clothes. He has one pair of trousers that fit and they are winter ones. But with his new skinny legs its just as well, he refuses to wear shorts even to sit in the house or garden. I am building up to a break away. my break away from him… wait to see what happens at clinic on Tuesday.
I know he is feeling miserable having lost all his fat and muscles again. Hard work ahead.
Love
Min
So if you don't ask you don't get, these consultants need to read more Jo. Its not good when the patient is keeping the consultant u to date with current events.
Love MIn
David I am so jealous,
I want to cruise down the Rhine. Or anywhere else come to that matter. But i think our traveling days are over.
You enjoy life to the full whenever the opportunity presents itself. Whisper about it when you come back or I will be green with envy. Lucky lucky man
Min
Oh Gill,
I know just how you feel, its a week now out of hospital with Neutropenic sepsis,sort of the equivalent of an SCT without the stem cells if you know what I mean…… he is becoming a fad. I want I want I want just like a 3yr old and when he gets it he doesn't want it. I am worn out with trying to please and now deciding just to give up. If he want s it he can get it himself. I have spent the entire day in the garden wearing myself out,the sun has been scorching even for the north east . but, the joy of gardening is…. I don't think…at all I just enjoy;. cutting the grass potting and tidying up. I have been lost in foliage for nearly 7 hours and it was wonderful. Now got to cook dinner and listen to the latest moans.
I had my knock out drops last night and tonight I will be so tired from the garden work, that a glass of wine should finish me off nicely…
MM Men cant live with them cant live without them!
I hope Steven starts to pick up soon, life is such a bit..ch for them I know I couldn't do what they do so from time to time I get soft on him… That is where Im going wrong.
It better be worth all this aggravation or else!
love Min
Ah sleep, where for art thou. Not in my bleeding house anyway.
Peter can sleep on a sixpence at the drop of a hat, but staying asleep without a visit to the loo now thats another thing. When he is well he walks the dogs at an ungodly hour usually 5 or 6 am poor dogs miss there lie in. He then comes back to bed and has the next 4 hours or so.
Me I used to go to bed and watch tv for about 30-40 mins and fall asleep with it on a timer. But now I have started to read books again after years of not bothering I can manage 2 whole pages before I am comatose. I wake regularly at 4-30 and my mind goes into overdrive and I sort our all my problems then fall asleep about an hour later and forget what I sorted!
Once a week I take knock out drops and sleep the sleep of the dead, and wake up with a headache but not tired.
I don't know who said the older you get the less sleep you need.. it is utter rubbish.
When your pandering to the whims of a man who one day wants brown bread with his sandwich and then the next swears he never said that, exasperations drives sleep away. He is the worlds worst patient at home but a model patient in hospital. hmmf Must find a way to get him back in there! but as the visiting is exhausted theres nothing to be gained.
My knock out drops came from Florida (wallmart) and they are brilliant. Perhaps I will take another trip to get some more soon.. Thus getting a rest from the man with MM.
Desperate Min
Hello Eve
Right now I am exhausted… don't think I have been this tired in a long time. Peter is still very weakened, ( bare in mind I am married to a house husband who loves the hoover and iron!
The most he can do is get out of bed mid morning and take all the medication he needs and watch the war. GRRR on sky.
I think I am both emotionally tired as well as physically and with it comes anger (again) why did he have to get this sick and why does it seem never ending. I think of running away frequently but know I wont.
Don't worry I know I will shake myself out of this but its not easy and I hate ironing especially shirts!
The kitchen is keeping me occupied again as decided to go for more quote, cant have too many or too many designs Ive discovered.
Everyone is obviously out in there garden or watching wimbledon. Its raining here and I hate hate hate tennis. Because whenever the tennis is on it rains in the north east of England. Just realised thats why Im depressed.
Min
