Another sleepless night

Dear Daloni and Rayboy,

Sorry to hear of your sleeplessness, and Daloni of the kidney pain.  Is there any end in sight? I remember there was an infection when the replacement was put if ( and how long it took to get them to replace the stent). Hope they can correct the problem or at least address the pain to zero.  

I too have some sleepless nights I am awakened by back pain caused by the Bendamustine treatment .  I just give up take another pain pill and read, Sometimes putting on my daytime backbrace helps the pain and I can go to sleep. That is why I am up at odd hours reading the forum.

To everyone, better sleep and happiness in the future.

Hugs to all,

Millie

Hi Millie

Thanks for your kind words. I’m afraid there is no end in sight to the kidney pain - just managing it. I had a tumour block the ureter back in spring 2018 and that was resolved with a stent. But that’s precipitated various infections and it needs replacing regularly. I saw a urologist about three weeks ago and she said they just hurt sometimes. It’s not due to be replaced until summer next year. Replacing it early won’t resolve the pain. So the current plan is working out an effective pain relief schedule with my primary care physician. It takes time but we will get there. 

I am sorry to hear you get woken by back pain. Why is it that pain is worse at night? Do you know? 

Xx

Dear Daloni,

i have no clue why  pain occurs more at night. I’ve tried  sleeping on my side, back, stomach etc. just very thin vertebrae.. oh well I plan to ignore it. My daughter is taking me to see Phil Collins this week that should help keep my spirits happy. .

Best wishes in your new clinical trial! I send great hope.

HugS,

Millie

Hi MCLkid,

Sometimes pain that's worse at night is an indication of inflammation, and slow release anti-inflammatories can help. Unfortunately they're often contra-indicated by other problems or medications, it's never that simple for us. xx

Thanks for that info, . That certainly fits what I’m experiencing 

xx

Dear Tinalay,

 Thank you for the suggestion. Yes you are right,  that would be good, but my medication causes bruising and bleeding so no anti-inflammatories  for me. Today was better think I need to strengthen my back muscles....

Best,

Millie

Hi Millie

Sorry to hear that you are suffering so much with back pain, it's horrendous as I well know. I can't do without antiinflammatories, don't know how you can. I remember one time when I was working, my body was seizing up like I needed WD40! I went home, took antiinflammatories, went to bed for a couple of hours, got up and the whole body stiffness had gone. Naproxen it was. Now I'm off that because I had a stroke about exactly a year ago and apparently Naproxen can cause them. I was put on Clopidogrel again which I was on for strictly 1 year only after my heart surgery 7 years ago.

When a specialist nurse diagnosed me with spinal stenosis just over 4 years ago she recommended that I go cycling as that would build up my back muscles in preparation for an operation on my back. I have a fixed exercise cycle at home so I began to cycle. I never got the operation because the pain moved to across my lower back and after a second and third opinion, all offered by the consultants, the answer was still no. That's because a few operations had been done under those circumstances and there was no benefit so now the operations aren't offered. 

The cycling is what I was advised but please check with your medical team because it may not be their advice.

Millie, I read somewhere that you were going on a holiday to the Baltic which puts a little smile on my face every time I think of it. There's you, in Hawaii, lovely and cosily warm and you go to the Baltic, and we here in the UK usually go to a warm country 

How was it, Baltic?lol. I'd better explain that, just in case you don't know of that one! When the weather is really cold here, we say that it's Baltic!

I was at a couple of top class vegetable shows recently and I so wished that I was exhibiting like I used to. All my former competitors were there and I now have the bug, so I told them all I'll be there next year and they're looking forward to seeing me. So hell is going to have to freeze over to stop me! On Christmas Day at 11.00am, I'll be sowing my onion seeds as tradition goes in the world of vegetable exhibiting. I'm crazy, yeah, but when you have a calling, you've got to go for it.

Hope you get some pain relief Millie.

Tvman xx

Hi MCLkid, Well, I've been a night owl for a long time now. That's when I usually check this site. I have an iPad and have also downloaded Headspace. I have been doing meditation for many years now. I also do jigsaws online, there are some great free apps for jigsaws and it is hard to let your brain wander while struggling with a jigsaw. I also have a Nintendo and play Patience, Solitaire and various other games (although I'm not into video games). When I get fed up with that, I read books on my Kindle. I have read lots of books since my diagnosis but sometimes it's hard to concentrate especially when you are really tired!

I think it's a case of finding something that suits you! I also have arthritis like Tv man but have recently been told I can no longer take ANY anti inflammatory drugs as they are affecting my liver. I use Lidocane patches but they can be a hit or miss! I'm in bed now to try to get some sleep as we are going on holiday in the morning and leave for the airport at 3am. In the last four days, I think I've slept a total of about 3 hours, so feel exhausted now and when I'm this tired, everything seems to hurt! I hope you find something to distract you!

Thank you Annette!

My daughter and I flew to Tampa to see Phil Collins tonight that should take my mind to a better place will put on my lidocaine patch to help pain settle down. 

Trying to keep my mind busy and would like to try online jigsaw puzzles what is your favorite app? Brilliant idea I had not known about.

hope you have a safe journey home!

Hugs to all,

millie

Hi Roobarb

Sorry this is so late but i thought i would let you know i phoned the assessment suite and they told me to go to A & E were i was seen by one of the oncology registrars.  She informed me the itching is a common side effect if the immunotherapy i had and prescribed five weeks of steroids tarting at 80 mg per day.  I am hoping this will stop the itching which has been driving me mad, but have some concerns as the last bout of steroids Made me feel very low.  On a positive note my liver function is okay so i am relieved as i thought after my last bout of hepatitis caused by treatment i believed it had returned.  Thanks for your response and best wishes.