A little edited update to add a bit more of a positive vibe and lift my doom n gloom post below. Piccy of my beautiful grandson born 2 weeks before lockdown. This is our reunion after 4 months enforced separation. The faces say it all . He recognises me through facetime thank the lord. 😍
Actual post - Wow, what a week ive had. Last Sunday fever spiked and ongoing issue with L1 mets/hip/leg pain escalated dramatically. been in hospital since Monday. Had every test available, probably broken hospital budget lol but could not have had better care and this all free nhs 👏👏👏.
So had mri which ruled out L1 spinal chord compression - good news
mri also revealed further areas of mets. Already knew about L1 T5 AND T9. Additional mets to T11, right hip and c3 in neck. Mixed feelings. Bit shocked that more than we realised. But, good as all stable so Ill focus on that.
Mri also revealed totally unrelated c3 degenerative arthritis, together with c3 mets - concern around risk of spinal chord compression from this. Im greedy arent I, not enough just to have c3 mets haha.
Referred to spinal surgeon who reviewed mri scan. No immediate risk, no intervention needed at this stage. One to watch carefully.
When mri showed no spinal chord compression at L1 bottom of back, dr yesterday said this created another concern because very weak right leg on neuro exam, no knee jerk response, severe headaches and my stage 4 mbc so had to investigate spread to brain. Now, Im very strong and positive but I admit this scared me so much. So had ct head scan today. Also my temp spiked up again yesterday and pain level in right leg went sky high. Omg the pain was unbearable. Had to whip me quickly on iv parcetamol to kill temp and bring pain down.
Oh yeah, also iv antibiotics and 2 x different oral anti bios. 8 strong steroids per day - dexymethazone I think especially for spinal mets ibuprofen, tramadol and codeine. Plus now some proper neuro tablets especially for nerve pain but I forget the name. Rattle rattle lol.
Not got expert radiology report yet but dr reassured me tonight hes not worried about head ct. Phew. Got to wait for specialist to be 100% but pretty sure doc wouldnt have stuck his neck out if he wasnt sure.
Sorry such a long post but what a physical and emotional roller coaster ride of a week Ive had. . All on my lonesome physically, no visitors cos of covid 🥺. Oo yeah, another test i had. negative of course cos shielding but still good to know. Thank god for facetime and our lovely lady on here Clare - BellaE , as ever with me every step of the way, propping me up and giving expert physio advice. 😘.
So... my next question is about the potential risk of spinal chord compression in c3 coupled with c3 mets. I know nothing about degenerative arthritis and whether I can pro actively help myself to slow progression cos dont fancy having mobility scooter races just yet with dad haha.
Obvious ones are no heavy lifting which of course will also help with the lower back pain - totally separate issue.
More calcium. already have supplement cal chew because of denosumab. Too much dairy makes gives me nausea and indigestion because of palbo/ibrance but I can find a balance.
Do any of you lovely ladies (or gents) have experience or advice on whether progression of degen arthritis can be stopped and or how can I help myself.
Blimey such a long winded post but needed to give full picture. hope Ive not bored you silly .
Home tomorrow. yay.
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Mindysooty
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Oh my goodness what a nightmare week you’ve had...poor you...I feel guilty now complaining about my awful pain when yours must be so much worse
I’m afraid I know nothing about arthritis apart from it being painful but it seems you’re pain medication is getting sorted
Keep us informed about your results...such a worrying time for you
The Covid situation makes it so terrible...everybody I know is down in the dumps...everyone crying everywhere and we’ve had cold rainy grey days which don’t help...it’s bad enough with mbc without the extra worries
Thanks barb definitely my most trying week of this frightful journey. Thankfully pain now under control, dont ever want to have that again which is why I want to gather as much info on the c3 development as poss. Onwards n upwards and massive relief on the non brain involvement. Dont want to be negative but for me personally thats my biggest fear. However even then, there are people on here with it and coping admirably which really helped get me through this horrific time with that particular worry. So yet again this site kept me grounded without anyone even realising. This is why Im so glad I stumbled across Health Unlocked MBC group 👌👏👏👏😘💕.
Thanks and best wishes and you have had prolonged pain which must be very hard to cope with and can cause bad depression. I have friend with severe back pain retiring on ill health due to pain and depression. The struggle is real and coupled with our mbc worries, is enough to tip us all over the edge at times. X
Pain is the worst thing and I’m sorry you’ve had to deal with it
I remember a lady dentist I knew suffered with awful back pain after an accident...she actually hung herself and I remember thinking why do that just because of pain and she was only in her 30’s...now I understand why she did it!!
I spoke to my GP a few minutes ago and she’s told me to keep on taking the morphine slow release but not to take Shortec for breakthrough pain but to take cocodamol...apparently they work better with morphine...just shows how easy it is to mix the wrong combination...she wants me to keep a pain diary so she can then sort out the morphine dose...very helpful and made me feel better mentally...I’d got it in my head that morphine was the end of the road but she said many patients take it for non cancer pain so that sort of reassured me
OMG thats terrible about your friend. Poor poor thing must have felt so helpless with no way out. Horrendous.
You're right about the meds combos, so many variations, need to get it right. Pain diary is great idea to keep track because we do forget dont we. I imagine you have to write down what you were doing before and after the pain if it spikes and look for trends, all that sort of thing. Good luck with it all, I'm sure even just having a plan will help. It feels like you're more in control of it and yes, morphine used for loads of stuff not just mets so you hang onto that thought. Take care x Josie x
So sorry you have had such a tough week , and because of Covid , had to face it alone ( but glad Clare helped you get through it ) . I can’t help with arthritis advice but just wanted to let you know I am thinking of you , and hope you’re ok . Glad you can finally go home tomorrow and thank you to the N.H.S. ! Much love ! x
Big up to NHS and my angel here on earth Clare. I must say I also have a wonderful family and friends and work suppirt network as well as on here. I am very lucky. Thankyou for your best wishes. And not forgetting my beautiful grandson Charlie , born 2 weeks before lockdown who is the new light of my life. I'll edit and update with a photo of our recent reunion after 4 months. Divine 😍. Take care. X Josie x
Wow you have been through it this week, sorry to read about that!
Glad you're in good hands with our fab NHS. Not got any experience to draw on to answer your questions, but again just wanted to reach out and say thinking of you and also reiterate to keep us informed on your tests etc....hope you are managing to sleep as well as possible!
Sleep deprivation to the max. Since Sunday morning ive had around 4 hours sleep in total, no exageration. Night one A&E from 10pm to 5am, night 2 virtually all night awake with blinding headache even though dosed to the max with massive cocktail of drugs. Last night, well wow, literally no sleep not even a snooze. no noise to disturb me just the noise of my own thoughts swirling round my head. tried everything laid in doing dark box breathing, meditation self reiki counting forwards and backwards. 4am threw towel in and had midnight feast cheese n biccies lol. Tried again 5am to 7am, nope nothing. Then discovered steroids side effects is sleeplessness. No shit Sherlock lol. Took me off them now so fingers crossed for tonight. Strange thing is, im ridiculously perky. Go figure haha.
Hope you are sleeping now. Steroids are terribly when it comes to sleep...I’ve been there and done that. Ask for sleeping pills if you are on them again! I’m off to bed or I would say more, so I’ll add more in the morning. 1 AM here and I need sleep too! Elaine
Much better now thanks. Having 5 or 6 hours so thats great for me. It was so weird though, I just didnt feel tired. Hope you got a good sleep too. 1am late to bed lol. Take care x
Glad your pain has settled enough to write a post. You have been so strong and brave this week.
I’m sure I will be doing a little video for you of exercises, but in the meantime I will say that posture of your neck is the most important area to maintain. Gently draw those shoulder blades downwards to get your neck in a nice neutral position. Keep the neck moving in it’s normal range, avoiding sudden movements. Your head banging days are over.
Sleep on your side with one pillow.
Lots of heat or heat and cold as an anti-inflammatory.
Fab practical advice as ever. youre a star and have helped so much. Dammit on the head banging, do love a sot of mosh pit mayhem lol but time to be sensible now. Seating required too methinks. X
Gosh. You have it going on! So sorry to hear of all this. But a fabulous post for any one of us who Ed to know we are not alone.
The only arthritis pain I have to go in is both my thumbs. Trigger thumb and carpal tunnel adding to bad osteoarthritis in both thumbs. But nothing like yours.
Im sure stress and lack of sleep contributed to the blinding headache. Also the fever. They never located the infection by the way so goodness knows what that was about. Have been having bad headackes but Im sure working from home on laptop also isnt helpful, likewise with the posture.
Ps, sorry to hear about your extras. hope you get good treatment, tablets, physio to help. Maybe even occupationl therapy? I bet you know all this anyway but gadgets for opening jars etc. Best wishes x
After going through such a horrible week, you still manage to sound upbeat. I’m sure a lot of us in this group wish we could have even just a bit of your positive outlook. I’m sorry I don’t have any advice on arthritis. Pins and needles on my mastectomy arm is what I have as well as pain on my ribs (right side) when I cough (this hasn’t gone away since I had that choking on a tablet incident although it has improved.)
Enjoy your week end at home. And your grandson definitely has your positive vibes😄
I just try to look for the good in everything. If theres a problem i will dissect and break it down into good and bad. plan what i need for bad bits to make it better , turn negative to positive.. and focus on good bits. Dont get me wrong, I know on this journey there will be darker moments and it must be horrid for people with anxiety and or depression, thankfully not something Ive experienced in my life thank god. Poor loves that have to contend with that too, must be hard.
I'd love to think my positive outlook could brush off on anyone and help them if they are down, that would be great.
Sorry you have pain in rib area , I wonder if you pulled a muscle or something in the coughing fit. if its getting better that could be feasible couldnt it. Hope you recover soon.
Thanks for Charlie comments. hes amazing. Very happy little chappy.
I am so sorry you have had such a dreadful time of it and without visitors too! I cannot give any input of value regarding the arthritis part but would just say that bone health requires more than Adcal! As much as calcium, healthy bones need vitamin D (more than they put in Adcal!), magnesium, vitamin K2, long chain omega 3 fatty acids and regular exercise. Things that deplete our bones of their minerals are smoking and excess drinking/smoking. I cannot fathom why our oncs seem to focus only on the calcium, it's only one part of the puzzle!
Your grandson is adorable and I love that photo of you both beaming! xxx
Ah thanks for the bone advice. i havent had time or energy to research anything so thats really helpful. I knew someone on here would come up trumps. Im a bit screwed on the exercise front for now but I have my lovely personal physio Clare -BellaE keeping me informed there too. Ill look into the other stuff. Just need to be careful with palbo dont we but if others are taking those things (are you?) With the same combo, ill get some. any particular strength I should go for. Top whack i imagine. No good me asking my onc, she wont participate in any conversations other than what she prescribes. Bit didappointing when its all to greater good but oh well cant force her to. prefer you lot on here anyway. Much more informed lol. Thanks. And thanks for comments on Charlie chicken wing as we call him. Lol. Take care and best wishes. X
Ps Ive never smoked. Im not a big drinker, odd glass of wine generally. Not a saint though, recently got a bit carried away and was defo, lets say merry lol. It was a lovely warm evening sitting outside. Guess I was just enjoying the moment a little too much haha. X
Nowt wrong with enjoying the moment! xxx I'm no medic so can't advise on strengths of things to take. However, I can tell you what I do! Omega 3: Nature's Best High Strength Pure Fish Oil, 2 caps per day. Vitamin D: 1000 iu per day (I know my vit D levels are fine, if they weren't I'd take a much higher dose. Obviously sunshine on bare skin is best for this vitamin, when possible (not at the moment in the UK!) Magnesium is a tricky one. I take a small dose of magnesium chloride per day but I know it is not easily absorbed in this way so also apply magnesium oil (home made) to my skin after my shower each day. I don't currently supplement with K2 but I know it is in fermented foods (sauerkraut, miso) and dairy stuff like cheese and yogurt. Hope that helps my lovely, sending virtual hugs. xxx
I'm so sorry to hear of the horrendous week you have endured! I hardly know what to say. You must be feeling wiped out mentally and physically. But it sounds like you have your pain under control, which must be a big relief. I don't know about you, but I cannot handle being in constant pain. Even having a headache is enough for me, and I take painkillers at the earliest opportunity. I'm not brave, and do I try to soldier on with pain. I hope you were treated well in hospital and took the time to rest while you were there. You deserve some TLC and proper care. I had to smile when you said you had probably broken the hospital budget. You are worth it! None of us should feel guilty for receiving the very best care that there is.
Your grandson is gorgeous! You look like such a proud, happy grandma. I hope he is a welcome distraction for you.
Wjlhst a gift to have a new, beautiful grandson! Congratulations gramma! Wow, you have had a terrible time of it. My heart goes out to you. Glad you are out of the hospital and on your way to recovery.
I also have degenerative arthritis in my lower back. Not sure how to stop it. Hopefully, someone here will have some insight!
Oh such a gift and he came to mine to welcome me home. First visit to my house post lockdown. Best medicine ever.
Im sorry you have degen in lower back too. And hope you dont suffer too much. My drs advice and reading suggest you can help yourself with diet and supplements and gentle appropriate exercises and the obvious postural and no heavy lifting cautions. LouisaMay put some good advice and suggestions for bone related supplements on in this thread that may help you too.
So glad the week from h--- is over. Sweet little Charlie looks like he would be a big help. Nothing wrong with a glass or two of wine or even a jug. So glad you have some normal back in your life. Best wishes. Blessings, Hannah
Thanks Hannah, Charlie came to welcome me home. First post lockdown visit to mine, so special. I can still hold him sitting down so say in rocking chair to feed him , followed by milk coma and sleepy cling on cuddles with his little arm round my neck. Best medicine you can get.
On cocktails of a different kind now so best skip the wine jug for now haha, but a tiny glass if I want one wont hurt for sure.
Hi Sandra, nice to hear from you, helpful as ever.
Thanks for Charlie comments. hes a joy and a blessing.
Totally agree about Onc involvement with this bone stuff. she will interact about this because she prescribed the calcium in the first place but your comments on that are very informative and helpful as everyones initial thoughts with strengthening bones is calcium isnt it. I was all set for a pint of milk a day and cramming the dairy stuff in so its a good job I have this new info to hand. I knew this board would come up trumps 😘. They've liaised with my oncologist during my stay in hospital so shes fully aware and Im going to ask her advice on anything more I can do. I suspect she'll say the Xgeva, or Denosumab as its known in UK, together with calcium Im on is appropriate but now youve armed me with more info I can probe and question a bit more.
Thanks for the info on the degen arthritis. Defo is an age thing. I was in an accident a few years ago and all the impact actually on the same side as the lower L1 issues but more age related methinks. I had the conversayion with my friends and we're all creaky gates one way or another. It used to be boogying the night away, now we've all on to get on and off the mini bus hahaha. But yes, usually slow progress which is good because there spinal surgeon has advised there is a risk as there is already a small degree of spinal chord compression around c3 and c4 but no intervention needed at this stage. One to watch.
Thanks again for your invaluable support and advice. You take care. best wishes. Josie x
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