BONE PAIN

Hi    Well hello Jim, I don't believe we have chatted before, so welcome to the group no one 'wants' to join but once they are here are glad they wrote that first post. I'm sorry no one has responded to your post yet, maybe in the morning you will get some replies as a lot of people go to bed early. As you see, I'm a nght owl and it's usually pain and/or discomfort that keep me awake. Of course it could be that no one knows what your bone pain feels like. I've just read your Profile Page and I have also lost several members of my close family to cancer although my sisters got tested and were told it's not genetic! Anyway back to you. I'm assuming your pain may be from your pelvis. In my opinion when pain troubles you even if it's intermittent the best thing to do is contact your GP or Oncologist. At the moment it may be a bit more difficult but even if they are not taking face to face clinics, most GP's certainly will talk to you over the phone. Your pain maybe coming from elsewhere but only a medically trained person can say from where.  In actual fact I spoke to my GP just last week and he sorted out what I was asking. Maybe start off with him then contact your Oncology nurse, (I take it you have her details) who will speak to the oncologist if she thinks it warrants it. Or you could phone the Helpline at the bottom of the page!

I'm so sorry this is all I can suggest but everyone's pain is different and what works for me (I also have osteoarthritis) won't work for you, so better to get a tailor made diagnosis. Now you've posted here, I hope you will continue to contribute here and I look forward to getting to know you a bit better in the days to come. My only advice would be to rub the 2year prognosis out of your mind and enjoy every day, one at a time. My prognosis was 5-7 months and all I could think of was funerals! I wasted a lot of precious time. Got on a trial and am still here years later!! How are you doing with this Lockdown?

Hi Jim788, I have recently been having a lot of pain particularly in my legs. My arms and legs are really aching a lot too, especially at night. I rang my GP earlier today and my doctor rang me back, she has upped the dose of my morphine and I have to ring again next week. I have cancer in almost all of my bones so knew a some point the pain would get worse,  rubbish isn't it? xx

Not sure if this applies to any of you but my bone pain gets worse when I am dehydrated and even more so if my denosumab injection is delayed. I was just in agony a few weeks ago as my appointments were cancelled to have my.injection due to the virus risk. I managed to get them rearranged so the district nurse came to do them and within days the pain had almost gone and was definitely manageable.

I also find that I need to take a calcium supplement now and again but that is more because of cramp. 

Hope you get sorted soon 

I thank you for your kind reply, what I am I looking for suppose is a magic pill to make any intense pain disappear. I have what I like to call my acre. Which is around my pelvic bone, more on the left buttock side. Nothing I can do about it. Causes some discomfort which I reasonably put up with. that and my sweats, which can be severe. I am on 3 monthly hormone treatment. I joke to my wife and friends that I am being turned into a woman. Started having severe pain. Thankfully not for long, left shin, top of left foot and big toe which started to curl upwards. These are very much intermittent at the moment and pain not long lasting. My fear is of long lasting pain and of what I have sampled, well I don't think my pain threshold is that high.

Found out today my urology consultant has left the NHS trust. Rang my GP who doesn't want to over ride my consultant, so rang my key worker who is no longer a key worker. You got to laugh, anyway to be fair someone from NHS Lincolnshire is supposedly going to ring me sometime tomorrow. Thank you for sort of listening.

Hi Jim, If you ever find that magic pill please remember to share it with us here, as I think that's what we are all looking for! Oh if only it existed! Whoever invents that one will be a millionaire! It's not good when your consultant or key worker change but maybe the next ones you get will be even better. I do hope they phone you back. Please let us know!

Hi

It’s very nice to meet you, although as Annette says, this isn’t a group that anyone wants to join it’s one that becomes a lifeline for a lot of people.

Pain. What can I say? I think it’s something so many of us here live with and it’s something that many fear. I’ve been living with pain since last July when the cancer made a self felt around my kidney. My GP and I managed to get a regime in place involving opiate patches and I was perfectly happy with that. Didn’t seem to cause me any side-effects such as drowsiness. But then I had a tumour start to press on nerves as they left my spine. That’s turned out to be a completely different kettle of fish.

I had some radiotherapy to the tumour, but had a severe reaction that involved the most extraordinary level of pain I have ever experienced. The last month I’ve spent managing that pain down. The radiotherapy is beginning to work, the pain is reducing, but I’m still on quite high doses of both long-lasting tablets and supplemental liquid to top up pain relief. I also take an anti seizure drug which is known to be good for nerve pain. The current regime does keep on top of the pain, but comes at the cost of drowsiness and a feeling of being out of it. I hope I will be able to manage the opiates down now to a stable baseline. 

The problem is that my experience is almost certainly not relevant to yours. This is really a medical matter. Living with pain is hard, and my next steps once lockdown is over will be to investigate some alternative methods. I might look into acupuncture but also into things like visualisation. The knowledge that the pain is coming, that I might be able to do nothing about it, makes for a degree of uncertainty was uncomfortable. So I think I might have to go back to first principles of finding ways to live with or alongside the pain.

I really hope someone calls you back soon. It’s such hard work chasing around after people 

xx

Hi all I would like to thank the community for all your replies. Unfortunately no phone call today, why do people do this? Sadly I have had some bad experiences with my NHS trust. last January after going through all the pre operative procedures the surgeon asked me into is office, stood up shrugged his shoulders and asked me why I was there and he could do nothing for me. I had an emergency operation some weeks before (weeing blood) had catheter inserted. I thought he was going to look at fixing my problem. I felt by his demeanor he reluctantly just replaced what I already had. So as I stand at 8pm on a Thursday clapping with my neighbor's its not for him or the missing phone call but the 98% of hard working caring staff I know are there and I know I will find them if not I have you the community. 

Hi Jim, I am so very sorry you did not get the phone call you were expecting yesterday! I just hate it when people say they are going to do something and then don't! I struggle to understand why they say it at all if they have no intention of following it up! I would phone them later today and if you don't get an answer, I'd get back onto your GP. How can he say he doesn't want to over rule your consultant, when at the moment, you clearly don't have one or a key worker. He is the one responsible for your medical care, so he should be trying to find out what's happening. Do you think the reason for the surgeon's demeanour was to do with the current situation and he was worried about you contracting the virus if you went in for surgery? He should have told you, if that was the case. I wonder was he the Consultant or the Registrar? You deserve answers, please phone them today, don't leave it!

Please keep us posted! Sometimes you have to fight to get the respect and treatment you need but only you can do this, please don't leave it there! Good luck!

Sorry to hear this Jim but unfortunately not surprised. It is great to hear that some people are getting a first class service but my experience has not reflected this over the years and I know that left to the medics I would have checked out years ago. Although I am weakening now and probably losing the fight I have had to fight my corner several times and thankfully got good outcomes each time. I once waited 4 weeksiweeks for a phone call promised the next day I hope this does not happen in your case. It is reassuring that you can still appreciate 98% of NHS staff my experiences would put this much lower now but the good ones are worth their weight in gold. 

Try to keep positive Jim sometimes the wheels turn slower than expected and sometimes the medics get things wrong. Do you have the secretaries number until recently my oncologists secretary was the most useful and helpful person involved in my case. When she left I was so upset as she was so good at getting things sorted and getting information to me asap. 

Hope you.get news today and it is good. 

Hello,

Sorry to hear about you bone pain. if if you dont mind, what meds are you on? Some meds are associated with bone pain.

yours,

millie