Im out and at home. Didnt expect the do’s and dont’s though. Big no no for lots of foods I like and no alcohol. Tablets for up to 9 months.
Still home and had a home cooked meal – absolutely brill.
How about you Louis any ideas on escape date?
not sure what happened but submitted blog today which did not take.
Sa and Sun bad days neutraphils in my boots. Monday they were 0.38 and a step change in my demeanour. Today 0.96 and I went off he ward without a mask. If they trend p on tomorrows results then I am going home tomorrow.
Scary about what not to eat for 3 months, no Brie or samosas, beer, cider etc Amixed Xmas where the bright side of being alive and through STC far out weighs the lack of 3 months food stuff – no contest.
Good to hear Louis in a similar position lthough I am sorry you got an infection. I think being 100Kg probably helped me through a lot of the issue. Only lost 4 Kg .
Thanks for the support you hve given to Louis and myself – it means a lot.
lll, looks like I may be back in land of living. as neutrafils got low I crashed physically. that , being sick, having runs and not eating pretty ba. systolic hit 98 through lack of hydration. yesterdays count was 0.01 and today 0.05. foo diabolical when ou are down anyway and a sore thrat does nothing. Thought sickness had gone and Tina came in this morning for me to have 2 bouts but I think more mucus on throat. Last 2 nights resulted in wearing adult nappies in case there was a bcakfire I couldd not control. stomach was like a bubbling cauldron.Ha first cup of teat that tasted something like tea and Tina got some jellie babies for me to chew ~ good sugar content and may bind the tum.
The consultants tell you the story but not how really bad it is. I am still trying to think of the end game rather than the individual plays. Nurses have been brilll andd even had a doctor supporting me whilst on the big white phone this morning.
glad you are still doing well Louis – can you sendd your skpe address to graeme.ferrari@gmail.com an maybe we can patch in?
I am looking to be out by Friday coming so need to kick in the will power (wasnt he a singer?)
Gra
Louis, Tina always says we pay for things in life – well, other than lack of sleep or vivid dreams this morning at 6am obs I threw up again followed by 3 bouts on the loo all before 8.30. But watching the cars on the road between bouts sort of helped.
Waiting for Tina to arrive and low/behold another accident on A14 which she is stuck in.
Neutropenic yesterday so injections today.
Managed a bag of ready salted crisps yesterday and think I saw them today 😀.
Get a pair of binos and see if there is any critter movement in the courtyard. Maybe some snails or something.
How are you feeling this morning?
Gra
Had a room change yeserday moving 4 floors closer to my maker. Views are over fields facing Haverhill. Alos means I can get undressed without closin the blinds and turning light out. Had a Eureka moment where I have had 3 bowel movements after waiting 6 days, talk about luxury. May also stop the sickness.
have drunk a small/ lucozade an the very endof a mars and starting to eat meals again. Supprising how well I have one on tinned fruit.
So I have finnaly got to the neutrapenic stage and start GRGS injecs tomorrow This has been the nemisis stage in the whole process for me, the one which calmost stopped me being here now.
I hope others are doing okay.
Gra
Louis, been a bit of a sleepy 2 days along with bile and foam coming up. Food is not great made worse by not tasting anything correctly. I am still allowed out as NY cells have not reached neutropenic and allowed a window open. Everything is according to plan. Trying lucozade a tiny bits or marsbars tonight. Feeling tired and now getting light headed when I get up. Cannot have any no 2 motionsand trying not to get a heavy laxative in case I get the check runs.
Tina came in today and she accompanied me in the shower whilst I washed – and no she stayed in the dry area.
Nearly 10pm and coming up to my first week at 8pm tomorrow.
I have to corroborate what Andrewr stated that reading support on here mean’s I am not the only one going through this.
Melanie asked the docs what the score is, we are each different in the disease, treatment and body make up, they are best placed.
Managed soup and roll yesterday and also today along with chicken and jacket spud. Trying get the fibre in before the expected motions that have been mentioned. Still being slightly sick, more reaching than sickness. Not a nice felling.
As my original cells are still working I went out of Addenbrookes for fresh air today. Shorts, T-shirt and flip flops and spent 30 mins on the phone. Not sure if it boostedme or not. Came back to the ward and others had visitors. Bit of a downer as living 40 miles away makes visiting difficult especially as grand child has throat infection and other daughter not feeling well. My wife cannot see to drive at night therefore even Sunday could be a short visit. My brother in law work is here so he popped in and I do have the phone. Being institutionalized makes it worse, that lack of control.
Still good point is Louis and myself are now in a race to see who leaves hospital first. As none of you know us we are both out siders, book is now open, takers?????
My little bit of light heartedness in a bit of a weird and bum week.
Please keep the comments coming in for all of us in hospital as it does make a big difference.
Don’t know what happened last couple of days but very little yesterday as I kept being sick. Docs saying to nearly for the Mephalan and are the anti sickness drugs working – does a falling trees make a noise if you are not there?
So the cells went back yesterday and they tasted of tin tomatoes. My wife Tina missed it because the ward signs barred visitors from 1-3pm. Another error on our part as this is a split ward and it was for the other side. Ask the questions!!!!!
Today I have managed to keep the cornflakes down and just eating the apricots for lunch. I have a frog in throat so taking eating carefully. Let’s get through today eating bit by bit. I am 16 stone so some slight weight loss could be accepted.
Please advise if anyone takes offence at the blog as some people may not want to know details – me I had to know as much as possible.
Thanks Mike I will keep posting but how vivid not sure.
Chemo in yesterday pm and Shepard’s pie tea time – bad move. Talking on big white phone through the night. If you suffer sickness make sure you tell the nurses as they have lots of various anti sickness drugs. In fact any issues let them know. Share Share Share it really helps.
Dry toast and weak black tea for brekkie.
Stem cells pm due today. Another milestone.
Louis good luck for tomorrow.
I am having Mephalan this afternoon and the stem cells 24 hrs later. I guess this is the least positive I have been throughout the Myeloma journey. Not worried about the chemo as I just ha be to get on with it. The scary bit is hoping the cells take. Trying to climb over this obstacle in my head but it is difficult.
Any way enough of my worries so sending my wishes out to each of you going through treatment heads up and lets fight it.
Oh yes while I remember, Addenbrookes has a hairdresser so I went in this morning and had by receding monk like hair style clipped right back to the skull. I WILL TAKE CONTROL WHERE I CAN LOL. Any offers for someone to carry out the Brazilian? LOL
So now at addenbrookes having been assigned a bed.
This is it, I assume I wait for the doctor tomorrow and then start the chemo. Looking forward to the next 3weeks in a perverse way.
David, 2 years sounds a longtime. Would you mind explaining whetehr you were in remission at SCT and the PP count etc? I am at zero PP and feel great. The only reason to go SCT is to increase the avg 18 month remission.
Andrew
15 years hat is absolutely brilliant and now gives me a new goal.
Can you explain what you mean by memory fades? Do you mean memroy loss or you forget how bad the first one was?
Transpiresthebed allocated did not come to fruition so now 3 weeks behind schedule. May be spending Xmas in hospital the way its going. Maybe New Year as well ha-ha.
Toby, read my experience on the stem cell harvest. I was the one in a year that Addenbrookes get. I managed to pass out but also gave 760 Million cells in the 2 hours, which the equivalent of 4 stem cell therapys worth. I suggest some one goes with you as especially if you have a anula in each elbow as you cannot bend your arm. Makes reading and getting a drink difficult. They recommend 5 hours on the machine so be ready for a long boring time.
Brilliant news just what anyone wants to hear. I have completed all tests and have given up stem cells. Get a central line fitted 3rd Nov and bed availability I go in on the 4th. Scared is an understatement but needs to be done to increase remission time.