[brochoParticipant]

Hi Eve I really feel for you , it sounds as if you both have a lot on your plate at the moment The trouble with dex is that as a patient its very hard to admit it is the dex making you behave badly As hard as it will be try and ignore your husbands bad temper if you can , if you say to yourself its not him its the dexAbove all though make some time for yourself to do the things you want that have nothing to do with myeloma or hospitals!!Spoil yourself occasionally , you deserve it as you are going through the myeloma journey alongside your husband and in many ways its harder on the people who look after us Your bedroom and any other jobs in the house will get done in the end but looking after yourself is more important for both of you Take care Bridget

[brochoParticipant]

Hi Ann wwelcome although I am sorry you are having to join us . I agree with Michelles advice and hopefully you wont wait too long Rrecently I was going to be referred to an orthapaedic surgeon to see if they could help with the pain in my back Apparently there are minute fractures in myeloma that can be the cause of pain but they are hard to see so surgeons use the CAT scans rather than mri. In my case radiotherapy was the answer as there was a substantial tumour on my spine , but 5 sessions of rt have got rid of the pain for most of the time Good luck Ann and I hope you get some answers soon best wishes Bridget

[brochoParticipant]

Hi Min what a nuisance for Peter to get the trots on his drug free week , just doesnt seem fair. I hope his neutrophils get themselves in order soon It beggars belief that they wouldnt do the serum free light chain test because of cost !!!Grrrr!! It makes me so cross In my case they are the only chance I have of getting an indication of whats going on other than scans or biopsy , both of which cost more than a blood test , so I hope this isnt going to become the norm Sorry to hear your rash is back , it must drive you mad This week I have been so exhausted its untrue and to top it all I have conjunctivitis in both eyes , so no mascara Next week is my week off so I am hoping to feel a bit more lively love Bridget x

[brochoParticipant]

Hi David great to hear your results , you must be on cloud nine !!Lucky you a whole 2 months before your next clinic , heaven. I hope your x-rays can put your mind at rest so that you can have some fun and normality after all you have been through in the last few months love Bridget x

[brochoParticipant]

Hi Sandie its good to hear your mum is feeling well and doesnt need treatment at the moment , long may it last Fingers crossed your scan wont show anything nasty .Work does have its good points keeping your mind busy though , hope you dont have to wait long love Bridget

[brochoParticipant]

Hi David I make a chart when I begin a new course of meds Just straightforward boxes but I leave room so I can tick off when I have taken them , the charts the pharmacy gave me didnt have space for this .I keep meaning to get a pill organiser but havent so far The other day I was told that these organisers are not safe to use with toxic chemo drugs such as Velcade and Revlimid , apparently you should leave them in their packaging until you take them . love Bridget x

[brochoParticipant]

Hi Keith it is blooming awful when your veins just cant be accessed and its even worse when you know the situation isnt going to improve. I agree with you wholeheartedly that licensing the sub-cutaneous injections needs to be a priority . It is infuriating that there isnt a short cut for situations like this Hope you arent feeling too battered love Bridget

[brochoParticipant]

Thankyou David what a great picture Bridget x

[brochoParticipant]

Haha Min I love it!!Got me with this one Bridgetx

[brochoParticipant]

Hi David thankyou that was the funniest thing I have seen in ages Bridget x

[brochoParticipant]

Hi Chris welcome I am sure you will get lot of support from all the lovely people on here It took me a long while before I even looked at this site , a form of denial I think Unfortunately not all people even try to understand myeloma but its very sad that your husbands family are so unsupportive . Grandchildren are a special joy arent they , I know a visit from mine can lift my heart even on a bad day Dont hesitate to scream or rant on here if you are need to we have all done it and there is always someone to give you the support you need , I think it must be harder watching your partner go through it than it is for us patients sometimes Take care Bridget

[brochoParticipant]

Hi Kevin its good to have you back .You have certainly been through a tough time and being in hospital that long must have driven you crazy!!! Heres hoping its a very long time before you have to go back there . love Bridget

[brochoParticipant]

Hi Kath lovely to hear from you but I am sorry you are having such a rotten time As you say it becomes a balancing act to gain some quality of life when these drugs rule our lives. At the moment I am hoping like mad that next month will be easier as I am fit for nothing most daysWhat I find really frustrating is when you have a day where you do manage to get something done and the next you are on the sofa again At least we all have each other !! I think the taste or lack of it is a huge thing it really makes me so miserable to not even enjoy a cup of coffee Hers to better days for us all love Bridget x

[brochoParticipant]

Hi Jet sorry you have had to join us but welcome to the most supportive group ever! I am on my first cycle of Revlimid too and I have been struggling Like you I am on Dex for four days, 20mg a day, and 25mg Revlimd daily over the three weeks Most of the side-effects you describe can be put down to dex but I think they are magnified when taking Rev as well As Gaye say though we are still here and as much as I loathe dex it does do the job Like you I was told the first month is the worst so I am holding onto that thought! One thing I have found , following Mins advice, is to take the Rev late at night , it doesnt knock me out just means I can stay awake a bit more during the day Keep on going !!! love Bridget x

[brochoParticipant]

Hi Norman I had my sct at UCH London , the team is led by Dr Kwee Yong who is pretty well known in the myeloma world Food was pretty much what you would expect but you are in your own room so wouldnt disturb anyone one with your own grub Macdonalds over the road and major supermarkets 2 minutes away I used my laptop with a dongle no problemswith mobile either. Mind you your appetite is probably not going to be great ! UCH uses a hotel over the road for the beginnning of your treatment, you and your partner stay in the hotel and go to the day unit for stem cell return and monitoring, until you need to go into a ward . Excellent scheme means you are not stuck in a hospital bed waiting to feel ill , but as soon as you need to go in there is a bed for you There are 24 hour numbers to contact the ward and an alarm in your room Good luck when are you likely to be having your sct? love Bridget x

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