Not being able to lie flat mets to back and still walking with crutches

galaxidi123

Hi I just joined have mets to back a tumour pressing on spine lots of spots im told. Was in remission from bc for 17 years back ache suddenly got bad May 2017 thought just ageing did not think I would get cancer again. Got radiation which reduced pain, then letrozole which stopped working now on chemo capecitabine 4 th round markers still not too good. My biggest concern is im still walking on crutches did not expect this doc says keep practising you should be able to walk, is anyone else experiencing difficulties walking without aid.  Before this I worked in a good job was the breadwinner I have 3 grown children, two at home who I am now completly dependent on im 57, my husband is not well and has not been for quite some time. Im about to get assessed to see if an exercise program can get me off crutches, doc is worried does not want me falling, I feel hopeless most days have always been strong and active, Also cannot lie flat on back anymore so how would docs rescan.  

Mollygirl

Hi @galaxidi123, I cant imagine after 17 years what it would be like to have the beast rear its ugly head again. Whilst I don't have any advice ... Just wanted to give you a hug   and say do what feels right and safest for regarding the crutches. Xx

AllyJay

Hi there  @galaxidi123. So sorry  about  this recent  turn of events. Big hug for you from me. Regarding the  crutches, all I can add is  this. Afterfinishing the  Paclitaxol part  of my chemo, I ended up with severe peripheral  neuropathy. I also have  other pre existing medical  conditions  which  result in my  havingvery stiff and painful joints, particularly  my knees. If I can't see my feet,  I have no  idea where  they  are  and end up  "scissoring" them,with consequent fall risks.Considering I also  have  severe osteoporosis,  and am now on Letrozole, big danger for fall fractures.  I have already had two spontaneous  rib fractures  (different ribs),  without  any falls or bangs. Got a few after a fall  too. I now use a wheely walker, and I have to say, I have  found it a bonus. I put  all my stuff under the padded seat, and it  allows  me freedom to  go  where I  want.  It also alerts oncoming  pedestrians to be careful when they walk around  hypnotised by their mobile phones and not looking where they're walking! I  would imagine crutches  are  a  pain in  the behind and much more  clumsy  than the walker. I'm 59 and  feel my  dignity (what's left of if after this shitfest), is less important than  my safety,  so Granny Walker it is for me!!

Afraser

This is really difficult stuff to deal with, physically and emotionally. Like @AllyJay, I was affected by taxol and feared for my ability to walk. I am OK, feet are still damaged but I can now walk without pain or difficulty (running is another matter!). However my mother had a lot of spinal damage (not cancer)which badly affected her legs, particularly her knees. The constant rejoinder from doctors and nurses was to keep walking as much as possible. Which is consistent with the advice you are getting. Perhaps best to check if a walker is acceptable instead of crutches, as anything that helps you walk more would be good. Very best wishes. 

primek

Certainly the physio might help and come up with alternative ideas to get you more mobile and feeling safe. Are they considering additional radiotherapy? You might need additional pain relief to get through a scan. Hope things improve for you soon. 

Zoffiel

Oh @galaxid123 what a shit turn of events. Doc says keep practicing, oh that is just brilliant. Really not helpful. Lose your balance and accidentally stab them in the leg with it. So sorry, difficult things, crutches.

 Do you have access to a pool? I've got an open door membership with my local YMCA which, though I still feel awful about accepting charity, lets me get in there and use what I still have. I can help you sort that out if there is a facility near you.

 I think in the coming years there will be a realisation that while 'muscle and joint pain' is listed as a possible side effect of Letrazole, it's something that a great many people experience. It's turning me slowly to salt, but also gives me a 30% better chance  of survival. What do you do but take it.  Let's hope the new drugs make life a little easy. Best wishes and good luck. Xxx

galaxidi123

Thankyou for your posts my other challenge is boredom of not being able to do much my family will take me for drives to see friends or go by the water practise walking with crutches get some fresh air I find im struggling with this adjustment its now 8 months I get an assessment this week will see if experts can get me walking again. I cant be by myself feel very vulnerable and as with all of you the uncertainty what next, friends family suggest movies books etc cant get motivated just not myself anymore. Asked cancer nurse re any face to face groups and she said she would find out, there is one but that is on the other side of sydney, I was a fun witty person with a good sense of humour before this. Now im very needy and insecure. I feel better away fom home seeing people dont like the isolation. Im very thankful at the same time for good family and friends and resources such as this site to connect with you all.

Brenda5

Sorry to hear your bone troubles. My dad has it too. He gets radiation on the parts of the back which are really bad. He has bone mets in many places and if it gets unbearable they zap it with radiation and if that doesnt work he has his high end pain killers.
He is loathe to want to use his wheelie walker but if we are in a shopping center, we have discovered if he has a supermarket trolly to push, he seems to be able to get around better.

AllyJay

Hi  there @galaxidi123,  are  you unable to  walk at all at the moment? You say you are being  reassessed  this week  regarding mobilisation...hopefully  they can help you. I'm  sure  that  your only options  are crutches...very limiting and cumbersome. You also mention  you are in Sydney, but that  groups are on the  other side for  you to  attend. What suburb are you in? I'm near Hornsby, and although I don't drive, I'm able to  travel the  train  tracks to  my heart's content.  Once  you  get  mobile,  we could perhaps meet for a  coffee and us two old trouts can whizz  along with our walkers!!! I intend dressing mine  up with GT stripes, some hanging furry dice, a nodding dog on the seat and an airhorn to blast my way through crowds...(kidding).   

Marianne_BCNA

Hi @galaxidi123, I’m going to send you a private message as I may be able to help you with ideas re groups and some other ideas.