Hello. I don’t know if I am writing for advice or some of your caring encouraging words. First of all I am in a deep state of grieving. My 44 year old daughter died of breast cancer one month ago . She had a 14 year old daughter and 23 year old autistic son. She lived in America and because of my pathetic d body I wasn’t able to go to her. It’s been devastatingly difficult and I am heartbroken.
On top of this my health has deteriorated. I am on 9 mg Prednisolone and tapering slowly because of recurrent flares. My CRP is mildly elevated at 20. ESR and other bloods normal. Back and hip pain is excruciating. Neurosurgeon reports severe deterioration in lumber MRI and has agreed to a spinal fusion, no pain reduction guarantee. Waiting list 2/3 months. I can no longer bear weight on my right hip. I had an urgent THR May last year for Avascular Necrosis from 9 years on steroids. I have been referred to the hip dr for likely THR again according to hip X-ray. I am also waiting for an eye op for worsening ptosis. I am in such a quandary. What to do first? How to do rehab with pain and poor function? How do I cope with this whilst crying most of the night? Plus my husband is ageing and finds it difficult to cope with rehab and looking after me when they send people home so quickly. I just want to take morphine and stay in my bed.
I wondered if anyone else had had a similar conundrum of needing two surgeries at once. I don’t believe my PMR is very active any more, more that it’s an adrenal problem when I get below 8/9 mg.
Thank you so much for listening.
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Nightingales
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So sorry to hear about your daughter you must be devastated, my sincere condolences.🌸
Cannot help on which surgery to go for first, other than to say what is causing you most pain/mobility etc.
I do hope you are getting all the support both mentally and physically you need [for both of you]. If not, then please do speak to your GP and any necessary local authorities/charities.
Don't be too sure it isn't your PMR grumbling - you are under extreme stress.
So very sorry for your great loss Nightingales, I know how painful the grieving process is in the loss of a beloved child and in your case made worse by your failing health....all my thoughts go out to you today.Not experienced enough to give advice on your condition, but for your mindfulness and care the advice on this site is so comforting when given.
Its very good for us to talk about our loss, not good to keep it inside.The people on this forum are amazingly caring, so reaching out is so comforting, just talking helps greatly and their replies showing that they care helps a great deal.
Having an autoimmune disease or diseases is distressing enough.
We are thinking of you and sending lots of love your way. Xxx
So sorry - there isn't really anything anyone can say to help is there? You weren't there to help and can't be there for your granddaughter either. But I'm sure they understood.
You DO need counselling - but I hear where you are coming from. But you also need to get the GP to get themselves in gear. No-one should be discharged from hospital until they can cope with the situation at home - with equipment and carers if necessary. So the GP should be looking to get that in place for you. They and your consultants need to get their heads together to work out what is most urgent OR which will give the greatest improvement in QOL. How urgent/severe is the ptosis? Can't do anything if you can't see! But is it really going to interfere with the hip stuff and delay that for very long? I'd have thought it could be done, then the next on the list fairly soon after. But I'm not a surgeon.
And there are counselling services that will come to you, rather than you to them.
Thank you. Good advice as always. I haven’t even told the drs about my daughter as I end up too distraught, but I do need to do that. The ptosis can wait so that’s one thing I can put to one side. X
I know how awful it must be to talk about it but you MUST let them know somehow. Have you got a friend/family who could at least outline the events in writing for you so you can just hand it over and ask them to read as it is so upsetting for you to talk about. Have a few copies to just give to a nurse and the doctor. It will have a bearing on how they deal with you too since you are obviously under great stress as a result and that makes everything feel worse too.
Others with more knowledge regarding your operations will be along shortly.
I just wanted to say how very sorry I am to read about the tragic death of your daughter. No parent should have to go through that & I can't begin to imagine the unmeasurable grief & pain you will be going through.
You said you weren't able to get to her, and as a parent myself, I know that whenever your child is 'struggling' or encountering really challenging times, you instinctively want to be there next to them, making everything all right again.
In situations like this, you need to try & take comfort from the fact that the pull of a mother's love is stronger than anything else, and although your body may feel weak, it doesn't mean that your mind isn't strong.
Your daughter may have wished you could have been with her, but you don't need to actually be with someone for them to feel your love, and her mum's love is really all your daughter needed from you.
I'm pretty sure she'll have felt that love so please don't allow your inability to be with her to detract from that.
If you were able to communicate with her by phone, facetime, etc, then I'm sure you will have 'held her hand' in so many other different ways... maybe by talking together, crying together, laughing together, helping her make decisions, advising her, or by just simply being mum.
She'll be with you every day, but in a different way, and you will always be able to feel her love too.
Thank you so much for your comforting words Kendrew. We did communicate every day even if it was just a goodnight and I looked after her during her surgery, chemo and radiation when she was first diagnosed so I think she knew how much I cared.
Dear Nightingales, I am so sorry for your loss and all of your pains.
I have had a year with the doctors getting help and having a THR & second go-round wi PMR and I have learned this: Even with docs I see often my first line to their nurses and to them is "My husband is physically handicapped and I am the heavy lifter in our home so I need to be at my best." Short and sweet. This reminds them that they need to attend to me and Now. I don't assume that they know me from the next patient. And I take in written questions and a pen to jot down answers.
Great idea Kritterkid. My care has become disjointed because my long term dr has retired . I see so many different ones. But I am lucky to have a very good surgery.
I am so sorry to hear about the loss of your daughter and all the sadness that goes with it.
As PMRpro says it wouldn’t be at all surprising if your PMR is playing up because of your loss. Unfortunately, it thrives on stress and upset. You may need more pred. at the moment.
I have no useful advice about what to do next but anything that makes you feel any better physically and/or emotionally is worth a go.
I am sending you all my best wishes and a virtual hug.🫶
My sincere condolences on the death of your daughter. One can only try to imagine your grief. On the body part i can relate somewhat to this. Ive had two lumbar surgeries in the last twelve months and told i need a fusion but cannot do it until my osterporosis is sorted out. I can relate to the pain you must be in and also have very bad endless hip and leg pain. Its very difficult for you to think straight at present with all this pain and grief. Try find out what would help you somewhat with reducing the pain maybe without going into the big fusion yet. No quick fix probably unfortunately. Do let us know how you are doing.💐
Thank you. I am sorry you are experience this pain too. I used to have good results from steroid injections but it has got to bad now. One surgery at a time I guess.
Dear Nightingales, I cannot begin to comprehend the agony you have suffered. This forum reinforces how important it is to be able to unload our hopes and fears and that we have each others backs. Your blog made me feel very humble.,.. Much love.
Thank you for your kind words annimills. It really is comforting. I have turned to the forum several occasions and have always felt supported and helped. Grateful too.
You have had all the good advice. I just wanted to send my love and sincere condolences for the loss of your daughter .Wishing you comfort every day and the strength to bear this. 🌹
Dear Nightingales, my heart goes out to you, such a terrible loss. I see that you were with your girl and cared for her when she was going through treatment and latterly every night to give her your mother's love, what a lovely mum. Try to take care of yourself as best you can. Sending hugs 🫂
So very sorry to hear of the loss of your daughter.Words cannot express the pain you must be feeling as well as all the physical pain you are going through.Take comfort from the fact that you were with her when she needed you the most,and also take comfort that she is with you now,watching over you and hopefully giving you the strength to get through this awful time.Sending you a big hug.xxx💐
Just some practical suggestions. You could ask for a double appointment at the surgery so you have a bit more time to go through everything calmly instead of in a rush. You could also ask for counselling from your surgery - if you wanted to (I hear you that this could just seem like one more thing to deal with).
Don't forget the Samaritans are there 24/7 on 116 123 to support anyone in distress. They have helped me a few times in my life when I felt overwhelmed with what I was facing and didn't know where to turn. Sometimes we need help when we need it. Also Cruse bereavement support (office hours) 0808 808 1677.
And just wanted to add: my prayers🙏. I will light a candle for you and your daughter. You have given so much in your working life and caring for your daughter. It has taken a toll. I hope you can now care for yourself and find recovery.
hello, I don’t suffer with PMR but do suffer grief and understand how you are feeling and how hard physical pain is when your heart aches so much. I will keep you in my thoughts and hope the knowledge that people here are thinking of you is a small comfort to you.
Sorry, no advice, but just sending condolences on your loss, & all the best for your surgeries. Hope it goes well, & that you receive some counselling, too. S x
So sorry for what you are going through, losing your daughter is heartbreaking, there really are no words.
I’ve had fusion surgery in 2021 and it worked brilliantly as I also had bilateral fractures so was in a wheelchair, it was great to be able to walk with a rollator, pain free. Definitely worth it. Not sure about your other surgery but good luck. Do talk to doctor and hospital about your home situation because I know you used to be allowed 6 weeks of care free .
Thank you for the encouraging words Wendy. I have heard good things about the fusion but my surgeon kept stressing that it might not work which bothered me a bit. I am really glad that it worked for you. I will check into the care. I was going to research a week in a rehab facility. What happened to all the old fashioned convalescent homes? I was a nurse and many of my patients went there for care and pampering. But then we also kept new mothers for five days.
My nephew’s wife’ father spent a week in a rehab facility in Sussex by the sea. I am sure a Google search would find it. As it is charity run the price is reasonable at under £900 a week. He was very impressed. You can choose a one week or two week stay. You have your own en suite room. Your situation is heartbreaking and I am so very sorry for you. As for the order of your operations, if your ptsosis is affecting your eye sight, I would have that done first, followed by your hip and finally your spine. You may find that your back is more bearable when your hip has been addressed. It would be wonderful if you could avoid a fusion. Sending sympathy and very best wishes.
Thank you so much. Very helpful information. It’s good to know those facilities are out there. Luckily, finance isn’t too much of a problem and my grandchildren won’t ever want for anything materially. So I might treat myself too! Thank you again x
We all suffer from regret when someone we love dies. All the things we think we should have done or known. My husband died along ago and yet I still have such feelings. Or even a friend that I wish I had known, or done this or that. But this is an appropriate place to express such feelings, though a grief counselor and grief support group could be helpful. Especially the support group where others are going through the same thing. Or even an anti-depressant medication --I finally went that route and a good therapist and it helped. Your stress level is extreme between health and grief.
You are so right about the regrets and what ifs. So many people on the forum have struggled in one way or another and I have found such kindness and understanding here. I will get counselling if I need it. Thank you x
I suggest not waiting. You need all the support you can get right now. It's a good place where you can explore your feelings, express them without having to be concerned about anyone else's reaction and have an ongoing person trained to help you in that way.
Hi J, I’ve just read your post. I’m so sad and shocked to hear about the passing of your daughter. Although you were far apart in distance I’m sure she knew how much you loved her. You have so much to contend with at the moment. Living in the same town as you I know how difficult it to get the best advice from our NHS service particularly when more than one department is involved. Take whatever help you can to get you through this. You are in my thoughts and prayers, Tiggy xx
Thank you so much C. I saw that you are having a hard time too. Trying to figure out our health needs is a big challenge. I have been meaning to email. Thank you for your kind words x
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