Sleep

Just want share a positive thought ,I am now on 2mg of Dexamethasone daily and slept last night for a whole 51/2hours .Feeling like a human being at last .Sleep is so important when you are unwell and steroids that supposedly make you better do not allow you access to sleep, how you are meant to feel better whilst taking them completely dumb founds me.Even on them I still have lots of oedema floating around my brain delayed reaction to stereotactic high dose radiation, not sure there working for me but I have been advised to continue until next Brain MRI in December.At least no tumour regrowth so that is a positive.I am disturbed that I can no longer walk miles as I now drag my left foot and have piled on a stone in weight nearly .If only there was another way to shift cerebral oedema.Looked at the world wide web in research mode apparently vitamin E might help and fennel tea ,cardamom tea and green tea may help.It is so frustrating when there is little to do changes things yourself .At the moment I am trying to sort out weight issue by slimming world on line ,Two 10minute exercise bike sessions a day ,I have lost 2inches off my calf and thighs ,steroid and Keppra muscle wastage side effects .Due to cardiac if I exercise too much I get irregular heart beats which makes me feel unwell ,I am walking to shops and back but cannot carry shopping anymore ,well perhaps a pint of milk and loaf of bread .

The thing is I know I have cancer ?under control at the moment we don't know about the cardiac tumour awaiting cardiac review as pills work for a while regulating my heart beat and then stop working and have to be reviewed.The thing is I just want to try and improve things I have always been an active not sporty type and now little bits of effort exhaust me.

I am lucky though in some ways as I like painting drawing sewing and knitting ,have a variety of friends who pop in but never sty too long ,or take me out and have an incredible distant family nets work who ring me or visit for short periods ,I know I am blessed with these links .I also visit the local cancer centre once a week just do there craft session currently knitting up a old bag of wool ,baby hats etc give them to hospital league shop on the way out of the hospital where it is centred .I have been a nurse for over 30yrs and I know that not everyone is as lucky as myself or as able ,just been able to get out is important.I walk with a stick right now but no doubt will need a scooter soon just to get to the shops or out around the park in the winter.So it is not all doom and gloom.Really mss swimming and yoga sessions not the same doing it alone at home but my heart condition wouldn't allow me to go to class probably cause a scene and distress the instructor.Cancer is just a rubbish ailment and presents it self as a physical and mental endurance test .Anyone got any ideas of how to self manage cerebral oedema let me know .Diane.

[miasam]

At least your getting about a bit and lots off friends and knitting i cant knit at all im left handed so found it hard .glad your sleeping a bit more my husband got down to one tablet but coused lots off problems slured speach very weak keeps falling short-term memory not good .not eating but like you he did start to sleep a few hours the palitive nurse and doctor came on thursday and said to up then to 3 again so his back to eating small amount but not sleeping again

[Hidden in reply to miasam]

Yes like your husband,yesterday couldn't move my left foot after reduced dexamethasone to 2mg as per plan, yesterday totally numb left foot and couldn't place it anywhere ,so decided to up steroids a tiny bit 2.5mg daily .A little better today but not brilliant stairs are a bit challenging .Like your husband this is more than little frustrating cannot believe that a delayed reaction can cause so many problems .At the beginning I had no problems and was feeling good .Brain tumours and treatment are obviously more challenging than most cancer issues I think .

[miasam in reply to Hidden]

I feel daves never going to get off the steriods he was on 12 milagrams weaned him down to 2 now back up to 6 .i agree i think the brain tumours are harder to master .hope things pick up for you at least were lucky live in a ground floor flat .take care x carol

[Dismal]

Good that you're getting better sleep. My husband is also on steroids although reducing the dose. He's getting a good night's sleep and as you say it makes a difference to the day following.

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear diane55

Thank you for sharing your personal story, of which am sure will touch many people. Despite your change in mobility, your fighting spirit is to be admired and how you are trying to adapt to changes in your life. Would your yoga teacher consider providing a private yoga lesson for 30 mins for you, or does the local pool provide gentle aquatic exercises which may accommodate your love of the water.

Apart from medical management, there seems to be no known self management of cerebral oedema, apart from what you are already doing.

Most cancer centres now provide complimentary therapies including massage, it may be worth inquiring or treating yourself, this may help with resting but also stretching the muscles to aid them in flexibility.

It sounds like you have many hobbies and interests , but more importantly friends. We hope you continue to receive the care in all different areas of your life as you yourself have given as a nurse.

All the best

The Roy Castle Support Team