My Mom finished her radiotherapy and is taking hormonotherapy. She was not allowed to stand/ walk for 4 weeks. She just started walking and standing. She has some métastases in her spine and sacrum. If anyone wants to share about “ recovery “ or advise on everyday life with spinal cancer I would appreciate. I know each case is different but I am asking myself lots of questions about life with spinal cancer ...For the moment she cannot sit... I hope she will be able to ...
i also have spinal mets diagnosed in 2017 after having breast cancer back in 2012.
I have mets in my neck, most of my thoracic all of my lumbar, sacrum and si joints.
i also started my treatment with radiotherapy to two sections of my spine that were more affected and that was the middle and the bottom area, I have luckily been able to sit and walk albeit like a crab until the radiotherapy did its thing and had me walking upright in a week or two. I do have an occasional dull ache in my sacrum and I’m always careful to sit down gently as I once bounced into my car to drive off and the pain reverberated through my spine, I didn’t do that again!
Hows your Moms pain? Is she taking anything? I take paracetamol, ibuprofen and morphine capsules and these help me lead a relatively normal life, I’m also on a treatment called palbociclib which is an oral chemotherapy and I take letrozole alongside them, I have had a good response with them and my last scan last week showed no progression and my tumours were stable... I have days of frustration when I can’t do what I used to but I’m learning to be kind to myself, I hope this reply helps you and if there is anything I can help with just ask.
Big hug Jo x
Hi. I also have bone mets in my sacrum and pelvis and a few other places. I had radiotherapy to to the pelvis and sacrum, the pain got worse before it got better but it did get better. I hope your mum sees some improvement soon. Take care. Xx
Thank you for writing and sharing; it does help, comfort and feels good to gather some infos/ real life testimony . My mom started to walk, it seems it is happening rather fast :) I was so worried she was going to be paralyzed... she waited a long time before consulting... Her breast cancer is advanced , metastasis had already spread to the spine and she could barely walk when she finally went to the hospital. She did a round of 10 radiotherapy treatment and did pretty well. She i# taking Arimidex with Ibrance. She now seems to be ready to put a good fight, She is not complaining too much from the pain at this time but is taking morphine. ANd yes I think she will hopefully learn to be kind to herself which she hasn’t... Anything you think I could do to help? Thanks so much for your kind words. I am hopeful.
Sending you the best, strength and courage as well,
Thank you for sharing, I wish I could understand what you and my mom are going through better so that maybe I could help better.
Thank you for your kind words, it means a lot.
Wishing you the best, let us know how you are doing?
Advice.... it’s a tough one, I was 43 when first diagnosed with Bc and 49 when it recurred up until then I was working full time, led a fast paced life as you do, and bam I’m back on this rollercoaster and like most patients with secondaries it’s all very different because they can’t cure you this time and you become all consumed with fear and grief and you google and you shouldn’t but you do and it’s all very grim but you come out of that and begin to feel quite postitive... and days where you don’t, i was never kind to myself because I was too angry that this was happening to me and I didn’t want to die and I want to see my grandchildren grow up and I got mad and bitter and then I just let it go and cried for a long time, and now I still get frustrated when I can’t do something but I allow for it now. Your mom will be feeling this and may tell you or she may not, I didn’t share with many my fears because I was trying to be brave so they didn’t get frightened especially my boys, grown up ‘ish’ but still my boys, one thing I hated was how different I was treat and the constant asking how are you today? How’s your pain? Sit down I’ll do it, it’s lively to be cared for please don’t take that the wrong way, but it was like that all my life became, constant questions about my health and it was very depressing for me, so I spoke to the people who were doing it and to be honest it was my mam and now she doesn’t and we talk about all sorts of things and go out for coffee, nice things, and we have a better relationship for it, my other half experienced it the other day when he had to stop work for pain and his colleague said the same as he says to me ‘ sit down I’ll do it’ he finally understood... and I’m glad. So ask her in a nice way and move swiftly on to the weather... I’m off to sleep now as I’m taking my granddaughter along with my mam to see Santa tomorrow, so exciting times...
Feel like I’ve rattled on but it’s hard to explain...
big hug Melanie, Jo xx
Thank you so much for the message. Sorry for the delay replying.I live in the US and my mom is in France, I just got back to France ( had left for 2 weeks) and will stay with her for a month. Unfortunately she was home for a day but went back straight to the emergency room and hospital due to fever and an infection. As per today she is doing better but it has been so stressful and I think she is scared to be back home. My dad is not as supportive as I wish he was, he is locking himself in almost psychosis and fear , so I think my mom doesn t feel wanted at home :(
I hope I will be able to help and that things will get better/ fall into place.
I wish you and family a joyfully holiday season,
Oh Melanie, you must feel torn, anxiety and fear for both your parents, your dad sounds in shock and sounds like he’s finding it hard to cope, is he the type to ask for help or go to a support group when he feels ready? If so ask the nurses looking after your mom for some advice and maybe some literature you can leave around for him to look at, I felt this also from my partner when I was diagnosed again, I didn’t want all the sympathy and hugs but his reaction was deadpan but now I see it was his way of coping, funnily enough we have never spoke about how he feels, I don’t think I want to know sometimes, is that bad? If I do mention anything morbid I get oh your fine and your not going anywhere, but I know it’s a coping mechanism. I hope as your reading this tour mom is feeling better and things have settled a bit for you all, you have taken on a lot of responsibility Melanie so please look after yourself and don’t burn out, I hope you have some support as well.
Always here for a chat, Jo xx
I live in the uk by the way, it’s nice to see where we all come from xx
Wishing you and loved ones a Merry Christmas and Holidays. I hope you enjoyed time with loved ones, some delicious food and also found some peace.
I cannot stress enough how much reading you and your honesty about everything is helping me. My dad is “ coping better” .After a tough day, I go to the site and feel less alone...
I am the one now that is upset and I seem not to feel anything anymore - I so wanted to be strong I got it ;)
Things were settling a bit but Mom fell today and broke her nose and teeth... Got so scared for her spine... she was taken to emergency room but is back home . Praying for an acalmy , but why so much ?
Tomorrow is another day, please a “
peaceful, resting one “
Thank you. Thank you.
Hey Melanie, Wishing you also a very merry Christmas! I feel like it’s over in the blink of an eye like usual.
I haven’t been well the past few weeks with pain in my spine getting gradually worse that my oncologist scheduled an urgent MRI and it showed that I had fractures in 4 of my vertebrae middle of my spine where your bra fastens, needless to say that has been binned till the pain is sorted! I’ve even resorted to a walking stick at home to get from A to B I also have some radiotherapy scheduled for tomorrow to help with the pain and I can’t wait, I’ve not known pain like this and I have been driven mad at not being able to do the simplest things. I’ve never cried with pain till this happened, my oncologist also wants to start a new chemo which I’m not looking forward to but I’ll do it, I’ve got a few more questions I want to ask before I say yes.
So Christmas has been a bit of a wash out for me, I’ve relied heavily on Scott my partner as my youngest son has recently flown the nest so it’s just us two now... I was quite bereft for a while but I’ve got used to it now, so hopefully my treatment tomorrow will get me somewhat to being back to ‘normal ‘ my second grandchild is due at the end of January so I’d like to be able to hold him with no pain.
So onto you Melanie, all your feeling is quite normal so please don’t be too hard on yourself, your trying to keep strong for your mom and dad and eventually your gonna crash and burn, your mom’s fall has shaken you because of what could of happened but thankfully it didn’t, was the fall preventable or accidental? I can get a bit wobbly sometimes which is why I use the stick to give me extra support,could she use one or a frame maybe?
I’m glad to hear your dad is also coping better has this made it easier for you? I hope so as this can also be a double edged sword as my mam wasn’t coping at the beginning on my diagnosis and it was hard for me but after she got her head round it she was googling every new treatment available and thought she had found me a cure and she was always disheartened to find it wasn’t suitable for me but we have reached a good point with each other that helps us both cope. Also I was telling you about Scott being deadpan when we were given the news this time and I’ve got to say we have talked more and he has been so good the past few weeks and I’ve also reached a new point with him also and it’s nice we have the closeness again as cancer can really define who we are and what we become so we all have to be vigilant to the signs of becoming depressed etc...
You take care Melanie and I’m sending hugs to you all...
Ain’t life a bitch? My pain also reduced me to tears for the first time, fortunately in the surgery of a GP I haven’t consulted before, who immediately said, ‘let’s get this pain under control’, doubled my pregabelin (quote, let’s not pussyfoot around), and when I spoke to him on a telephone consultation a week later and things were no better, set up an increase programme for the pregabelin over the following three weeks, which I have just reached, and at last! I’m certainly not pain free by any means but it’s just so much better. It is caused by s tumour pressing on my sciatic nerve - who would have thought it could hurt so much? Anyway I had a scan on Christmas Eve ho ho ho very jolly! And the awful truth will be revealed soon.
All this is to show that we are in similar situations.christmas was a washout for me, too, my bestie and my bloke and me were all set to have Christmas Day when I started vomiting the night before, with the result of.....turkey??nooooo! So we divided it into two and had the presents on the day, with nibbles for those who were eating, and as I feel less queasy I am going to cook the postponed dinner! Before the fancy free range etc bird has to be dumped as it will be well past its use by date, and i don’t want to be poisoned thanks!
so my new year resolution is to stop thinking about death and dying, do practical things about it if I have to; my district nurse suggests writing letters to people - not folk you hate though! And then get on with life and the here and now, which sounds like you’re doing that already.
sorry if this is a bit fragmented, I have to go off and do other things! But I wish you all the very best, and to everyone else, of course. Lots of love. Krystyna
For I have promises to keep, and miles to go before I sleep. And miles to go before I sleep. Robert Frost
I’ve been trying to reply to this message for around 3 days and tonyou too Ellie. Site has been playing up for me, but he’s Krystyna Xmas and so far new year has been a wash out for me, i has some radiotherapy on the 27th and the pain has been horrendous since, I also have cystitis which I’ve just got under control but had a couple of times when I haven’t got their in time!! Trying to walk fast with a walking stick doesn’t help I even had a wheelchair in hospital to help me get from A to B and then my lovely mams friend has loaned me her chair if I get another flare up again! Some good people, I’ve managed to get to Halifax to see my in laws and I’m debating if I’m well enough to go out till midnight to the piece hall? I’ll see how my pain goes. Hope this finds you well Krystyna xx
this looks like it’s been written by me as it is signed Krystyna which is me, but it’s not from me and I’m also puzzled by my name popping up in the text,!! I’m sorry to read the message as Peebee seems to be having a hard time, but maybe you can post a clarification? Happy New Year, I know fat chance. But it’s traditional so there we go. All the very best for 2019 to everybody. Xxxx Krystyna (really!!!)
I have honestly had a nightmare tying to post to the site over Xmas and have replied to you all on here on more than one occasion I think to you Krystyna around 6 times!!! Lol so I hope someone or all of you have had replies from me and thank you all for your good wishes,
I am at this minute climbing the walls with nerve pain as my tumours have fractured my spine and are unfortunately pressing down on them... I’m demented, I spend the day standing as sitting is unbearable... had the radiotherapy on the 27th so hoping this flare up goes soon and I can relax again x
Oh Peebee2, how horrible. I too have nerve pain from a tumour pressing on my sciatic nerve......the blasted tumour itself is bad enough but the combination is hellish. I was told of a ‘capsicum patch’ which solved a friend’s son’s pain in one go so I mentioned it to my GP this morn8ng...she looked it up...£210. Ok, not getting that then!! But the similar cream is £15 so we’ll go with that, and oxycodol (does anyone know anything about this?)
lets all keep on keeping on, girls and boys, and pray to whatever your god is that our distress is relieved but that we are still alive to enjoy it! Krystyna.
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