[alanjamesbyrneParticipant]

Not to sure what to expect now ,I’ve had chemo and stem cell replacement ,3 weeks in hospital ,and I’ve been home 5 days ,I get very tired ,I’m not really eating ,just don’t have an appetite ,taste buds are shot ,and I drink like a fish ,lol went back to hospital  yesterday,for blood test and every thing is moving along nicely ,got oncoligy next Tuesday ,it’s when does my appetite return and taste buds ,I get short of breath aswell ,any body recomend something to drink that quenches your thirst would help ,Alan ,onwards and upwards

[alanjamesbyrneParticipant]

Sorry I missed one very important bit the staff on C6L  at Southampton genral hospital have been fantastic ,and nothing was or is to much trouble ,I could not have asked for better treatment or care ,thank you one and all

[alanjamesbyrneParticipant]

Well through the worst now hopefully. Will be allowed home tomorrow ,can’t wait ,after nearly 3 weeks so fingers crossed when the Drs do there rounds ,it’s been a long hard struggle at times ,but don’t regret anything of it ,it’s fantastic what they can do ,and very greatfull for the chance ,to prolong my life ,I could not have done it without the support from my wife ,and family ,and friends ,the wife would spend 6/7 hrs a day with me ,helping and encouraging along ,nothing in the treatment is any big cause for worry ,you fell very drained for about 10 days but when the the stem cells start to reproduce you slowly feel better, onwards and upwards ,Alan

[alanjamesbyrneParticipant]

Thanks Matt ,the boredom bit is the worse ,but doesn’t seem like I’ve been here a week tomorrow ,so fingers crossed that every thing stays or progresses and only a week to go ,I think it seems harder as it’s the weekend ,not much football to watch today ,to break the monotony ,onwards and upwards

[alanjamesbyrneParticipant]

Thanks Ron ,I’ve been on chemo tablets 2 types for 4 months now ,just had the medium dose chemo by drip with no ill effects with any of it ,apart from my taste buds ,which drives me mad,I do know that the next one is the biggie and effects every body differently ,hoping that I get an easy run with that one as well ,with no ill effects ,I also had a stent ,long pipe, fitted to my chest ,as my veins had shrunken quite a bit ,it makes life easier now ,the other bit I dred is the bone marrow biopsie,which I have had twice now ,very painfull ,but not got to have that for 3-4 months  yet ,I am lucky that I live within half a mile of the hospital ,so that makes life easier ,especially for treatment ,and the wife visiting when I have to stay in isolation ,it’s probably changed a bit now as you say, I get free wifi, tv fridge ,kettle ,in my on suite room lol ,I can take my lap top ,ipad,and keep myself amused ,you can even use Skype to stay in touch ,so preety much sorted at the moment,even got suit case nearly ready ,oh well onwards and upwards,Alan

[alanjamesbyrneParticipant]

Hi Angela and graham I am very pleased for you and graham have a great birthday and holiday ,can’t wait until I can have a holiday again ,getting fed up with being prodded and poked about ,I’m lucky that I don’t have much hair anyway ,and have shaved my head for a few years now ,start chemo priming tomorrow and the injections and  other drugs Tuesday  stem cell havest on the 16th ,back to oncoligy on the 24th and if every thing is ok the big dose of chemo and stem cell replacement on the 3rd March had a stent fitted last week and getting used to that now ,at least on chemo and stem cell ,I don’t have to have injections now as I have all this new plumbing ,lol,so I am now looking forward to June when hopefully I will be getting back to normal ,and can get get away for a holiday with my wife and dog ,onwards and upwards ,Alan

[alanjamesbyrneParticipant]

I had a few words with the oncoligest today ,when I saw him last week he said I would have the big dose of chemo next Monday ,and then stem cell harvest a week later ,and then two weeks later stem cell replacement,I thought it does not sound right,my sister agreed with me that was what he said ,turns outi have a medium dose of chemo Monday ,and the big dose in a few weeks time ,inspired or what

[alanjamesbyrneParticipant]

Thank you Stanley ,much appreciated

[alanjamesbyrneParticipant]

Hi and thank you Nicky ,I wish you well on your treatment,and hope you have a speedy recovery,I am still a bit scared ,it’s all about the unknown ,I’ve been fine with all of it so far apart from bone marrow biopsy ,which bleeding hurts,and the other bit I hate is my taste buds ,which go to pieces when I am on chemo ,everything I eat or drink tastes terrible ,catching a virus is what frightens me at the moment,any good luck ,onwards and upwards

 

[alanjamesbyrneParticipant]

Hi all back from oncoligest today ,I have to have calcium drip tomorrow,then on Thursday I have to have a longline insertion fitted to my chest . Ready for stem cell harvest ,next Monday I have the chemo which will be on a day visit,and I start the GCSF injections on tues ,back again on 16 th for stem cell harvest,,then a small break till the 24th for oncoligest,I am assuming they will be doing tests inbetween,and then if all is well stem cell replacement on the 3 rd March ,they gave me a book on procedures of my treatment,but it seems it’s all changed some what ,I can’t understand ,I have chemo and come home ,they say it is a large dose ,and I might have to be drip fed the first week ,how are they going to do that if I am at home ,also this chemo will kill my immune system,so again I’m at home with visits to hospital most days,I don’t go into isolation until I have stem cell replacement,which as I say is the 3rd March all beig well,so I have to go 3 weeks with a very lowered immune system,surely I’m going to catch all sorts of things ,I know it effects everybody differently,and hope I sail through it all ,but it does worry me if I catch something ,oh well what will be will be,onwards and upwards ,Alan

[alanjamesbyrneParticipant]

Wife is fine ,I didn’t jump down her throat that much, lol just been talking to the hospital about a general  anasetyic they said they could not do it as my blood was to thin after chemo,but would give me gas and a sedative,to help ,what a load of rubbish ,my blood would be the same if I have a local ,or a general ,I just think it’s to much hassle for them ,I didn’t get gas or air last time or a sedative,only a local ,I think there short staffed ,I will try again when they ring me back

[alanjamesbyrneParticipant]

Sorry Keith ,one other thing I hate is my taste buds everything I eat and drink is terrible ,been back on chemo for a week after 2 weeks off ,and taste buds are crap again ,I’m lucky I live half a mile from the hospital so nice and easy for the wife ,Alan

[alanjamesbyrneParticipant]

Hi Keith ,and thankyou you have help put my mind at rest ,I’m not worried about the injections ,it’s the pain from the bone marrow biopsy,got an idea this one won’t be the last ,next time I will ask for sedation ,I’ve been positive all the way through ,but just lately dobut has crept in ,I know it’s the fear of the unknown ,the other thing I hate is the Mri scan ,for most people they listen to music ,but I wear 2 hearing aids which I have to remove ,I just find it a bit scary ,I know a wimp ,my wife has been fantastic ,even though I jump down her throat a lot ,I don’t mean too ,it’s the stress levels ,I find it easier to talk to people like you ,that has done it ,and I thank you once again ,for taking the time to explain ,good luck to you and your remission,Alan

[alanjamesbyrneParticipant]

Thank you LEGAL ,happy new year

[alanjamesbyrneParticipant]

Hi all .i was diagnosed with myeloma 2 yrs ago ,I’ve had radiotherapy on my shoulder ,I am currently having chemopherpy,I’m on the 4th ,cycle of 4 ,next stage is SCT ,I’ve got to go in for tests in 3 weeks time ,ive also got to have a bone biopsie on my back ,which I am dreading ,I’ve already had two ,then we start SCT ,I’m lucky in some ways I live less than half a mile from the hospital ,got to have a 3 week stay in isolation while my immune system recovers from ,high dosage of chemo  ,some of what I read is a bit scary ,I know it’s for my own good so it’s got to be done  ,and i know it effects everybody differently ,doesn’t stop you worrying mind,I am 59 living in Southampton,I’ve been married nearly 42 yrs and my wife is my carrer ‘we have 3 sons ,who give me a lot of support ,went to mcmillians when I was first diagnosed ,but the women scared me ,started talking about dying ,I thought it’s way to early to talk about that ,and havnt been back since,I know it will kill me eventually but some people go on for years ,I am still pretty active and I have gotten through my chemo quite easily,it’s got easier as I went along ,worst bit is my taste buds every thing tastes terrible ,I will be glad when May gets here as most of treatment will have finished ,apart from tests to keep an eye on it ,oh well, onwards and upwards

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