Pain in arm. Any suggestions?

She really needs to report this to her treating team.  One of the risks with any type of cancer is developing DVTs/PEs and brain cancer is one of the higher risk cancers for this.  Her team can eliminate this as a cause and then come up with a pain management plan for her.

HI there, my wife had terrible pains in her knees around the same time in her treatment. We rang the CNS and she suggested that we maintain a low dose of dexamethsone which immediately cured the problem. We have tried again to come off the dex since but it now causes headcaches and confusion so she just takes 1mg every morning to keep on top of swelling in head.

As Lolie says though it's worth talking to the CNS first in case it's something else. 

All the best

Chris

HI Cranesbill

sorry to hear about your friend but as Lolie sys she really needs to consult her medical team in case it is something serious. Blood clots are a common risk and can't be taken lightly. 

Everyone's individual circumstances are unique and their own team are the best folk to support them.

I hope she gets some relief from this soon.

Love n hugs

Wee Me xx

Hi Chris. Thank you for your advice. She’s back on the steroids today after speaking to her doctor.

Kindest regards

Sarah

Thank you Wee Me. I think she’s sorted and back on the steroids now.

Hope you are doing?

Oh glad to hear it. I'm hanging in there. We've had a rough few days but today's been better. Last Friday my husband started to have new issues with his vision and by Sunday he was down to narrow tunnel vision in his right eye. He had a "wobble" as he put it on Monday night for a few minutes which we now know was a small seizure. he had 4 more on Tuesday then one yesterday. The CNS has upped his Keppra dose and so far so good -only one wee one today so far. She did tell me there was no need to call them back with any more concerns over symptoms and advised that I reach out to our GP with any more concerns. I was a little surprised but on reflection I think she has jsut slickly moved us into the palliative care space. Time will tell.

Hope you're doing ok.

Sending love and light and hugs

Wee Me xx

Oh gosh. So sorry to hear your news. This rollercoaster is not a fun ride. I really hope you both get some more quality time together for a long time yet. 

We’re in limbo at the moment as my Dad is waiting on news of his scan. The last appointment was in September and we’re going back on Monday next week. We all feel so tense and sick to our stomachs again.Fingers crossed it will have remained stable.

Keep up the fight and hugs and love sent to you too ️️xx

Hey Wee Me...

Glad that the increased dose of Keppra is having a positive effect.

Being handed off to palliative care feels like a big step (every step feels like a big step!) - but for us it was an absolute game changer in being able to access the right services and support.  I hope you get your GP referral to the hospice quickly and I hope your local hospice is as good as ours is.  They are there for you and the family as much as for your husband.  Fi pretty much refused to engage with them until she was too ill to say no - but I told her from early on that I needed them - I needed their advice to help me manage her mental health and changes to drugs and to get access to community OT services to help her with her mobility and to keep her at home - and that pretty much stopped that argument.  And they were the thing that kept me going through the end of her illness.

I hope you are doing OK.

Pete

HI

I'm doing ok. I need to call our GP again on Monday to sort out a prescription mix up and the plan is to try to talk to the Dr to get their advice on what we need to prepare to put in place. 

The biggest challenge will be in convincing my husband to see or speak to anyone about this  but one step at a time and we'll get there. I had been in touch with the family support person from our local hospice back at the start and was having regular calls but they went off ill and the last message I left for a call back went unanswered, I've just quietly got on with things without them since but I agree I need someone in our corner from here on in. If I say I need support though my husband's stock answer is "Why? Nothing's changed. I'm fine,"  even when he clearly isn't at times.

love n hugs

Wee Me xx

Hey Wee Me...

Sounds like you are doing all the right things.

I had similar issues with Fi - but slightly different.  She refused to ever accept that her cancer was terminal and so when referral to the hospice was suggested she just refused point blank.  She was also going through her manic phase (partly tumour, partly high dose steroids) so when the hospice initially phoned me they got to hear her in the background shouting and swearing at me (absolutely the opposite to her normal personality - but quite useful that they could hear what I was dealing with) about the fact that she wasn't going into the hospice; I then passed her the phone and she gave them a good telling off as well.  As I think I said - I just told her that I needed help to support her at home and they were the means that the NHS had set up to provide that help.  "They are there for me - not for you!"

But they were amazing... constantly respectful and accommodating.  She refused to go to the hospice.  She refused to let them in the house.  She refused to let them wear their uniforms.  So eventually she agreed to meet the nurse at the local garden centre cafe.  I persuaded the nurse to let me buy her a coffee and then took as long as I could so that they got a chance to talk.  When I came back to the table they were getting on fine and Fi eventually agreed to meet a doctor and to have an initial chat with a counsellor (but not in uniform, and only at the garden centre).  Both of which were small but significant steps.  Eventually they were even allowed to come to the house.

Even before Fi was seriously ill they helped me to sort out a blue badge and PIP and they had better readhback to the hospital psych team than the GP and the switched up her mood meds and managed to sort out the manicness - which was the thing that was in danger of breaking us.  And sorted me with a counsellor.  Then as she continued to deteriorate, I had the confidence that I could call them whenever I needed support.  The nurse also sorted out a referral to OT and neuro physio.

So... why am I saying this... I always thought Fi was a nightmare for them to deal with, but in the end I don't think she was actually that unusual.  Against her protestations they managed to provide her with a lot of help.  And she got to set the parameters for her care - which is appropriate - as long as she factored my needs in as well.  By the time we had people coming to the house in uniform she was so ill that she didn't care any more.  And in the meantime they helped me to stay afloat.

I am aware that you haven't had the best experience with the hospital recently.  I hope I am not setting unrealistic expectations for what you might expect from your local hospice.  I remain daily grateful for the support ours provided to us - I hope that you will get what you need.

Hugs...

Pete