My mum is deteriorating fast! She got rushed to hospital on Saturday as she was totally out of it & was in a lot of pain. They said that her level of calcium in her blood is extremely high & are trying to bring it down. I don't even recognise her she is still so confused & does'nt really know who we are. I can't understand what is going on! I'm so angry as we were told a few weeks back chemo would be stopping as its not helping at all. There has been no palliative care put in place & I feel as though we have just been left to get on with it & this is why we have ended up where we are now.
I think I'm fast loosing mum now she is just hanging on by a thread. It just devastates me to see what this cruel disease has done to my lovely mum. I want to complain about the care she has been given but don't know what to do.
Sorry for ranting & I wish everyone well wishes.
Jo
Written by
1charliebarney
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I would ring the oncologist urgently or speak to their Secretary and say you are very concerned about your mum and feel that not if any is being done for your mum. Reiterate there doesn't seem to be a care plan??. I don't know if you have a cancer specialist nurse but I would go straight to the onc. And make a nuisance until you get some answers.
Thank you for your reply & im so pleased you are doing so well. I spoke with the team this afternoon. They think mum has pneumonia & a blood calcium is dangerously high. They have her on strong antibiotics, steroids & gave her an iv med to try & reduce the calcium. They said if it works it could take up to 5 days but if she doesn't get better do the family have any special wishes. I told them we want her at home. They said it could be arranged quickly with a nurse. I still need to get answers why they have been withholding the true extent of the cancer. We are all just praying she can get through this so she knows who we all are again! Thank you for your lovely email. It helps to speak to people who know what your going through!
I am really sorry that your mom is suffering so much and that you and your family are having to watch her battle.
If you don't feel your getting the answers you so desperately need then can I suggest PALs ( Patient Advisory Liason Service) all hospitals should have them. They can act as a mediator between yourself and the hospital. I have used our local PALs and found them useful.
Thoughts and prayers with yourself, family and your Mom
This is a lot for you to deal with and really upsetting. I am glad the team have explained what is happening but I understand your frustration and anger. Hopefully your mum will respond to the antibiotics and she will stabilise. As Deb has suggested PALs is an option.Perhaps initially it is worth focusing on getting a care package in place for her if returning home in a week or so is an option.
One of the hard things when you are caring for someone with lung cancer is how quickly an infection, side effect or change in their tumour can cause deteriorating health. Do make sure you are getting the support from the Nurse Specialist or other members of the team, as keeping you in the loop should be a priority for them.
If we can help please do call our free helpline on 0333 323 7200 option 2.
Hi Jo, I totally feel your pain. I was in a similar situation with my lovely Dad. No palliative care offered, no communication. From oncologists etc, Doctors giving different opinions. It's a long story and not one you need to hear at this difficult time for you. Sadly my Dad deteriorated extremely quickly and sadly passed away on 24 February. It was nothing like any of the information we had read, we had no support from the people who should have been there to support us and as much as we argued and complained still dod not get any answers. It's too late for my Dad now but once I have laid him to rest I will take this further as I do not want others to feel the pain we went through. My thoughts are with you and I feel your pain wholeheartedly. Please stay strong for her and make the most of every minute. My Dad had so much morphine in him when he died, he was out of it but I know he knew I was there with him and that I loved him. I am sure that your Mum feels the same, you sound like you have been an amazing support to your Mum. Stay close and cherish her. Please let me know how you are.
Thank you for your reply. I'm so sorry for your recent loss of your Dad. Must be so raw & you are obviously devastated! I really hope you get the answers you need & completely agree you must take it further. I'm sat at my mums bedside she is so weak I feel useless but it does give me comfort just being here for her. I'm hoping & praying that the treatment can reverse the effects of the high calcium.
I wish you much love & hope that your Dad is at peace with the Angels.
I am sorry to hear about your mum, and can understand your frustrations. I think you should maybe initiate the discussion about palliative care and asked to be involved in the care planning. Having the discussion about palliative care should not be about your mum needing it immediately, It should be about care planning for when the time comes. Having the care pathway mapped out can help you all to cope with the anxieties caused by the changing dynamics of the disease.If you have a specialist nurse then make contact with her. They are often trained both in a Lung cancer Specialism and in a Palliative specialism. The Specialist nurse should also help you understand how the disease has progressed and why the treatment of chemo has been stopped. Getting involved with decisions about palliative care can often help relieve peoples anxieties and misconceptions.
Just to help you understand the Hypercalcemia issue. Lung Cancer can increase the risk of hypercalcemia. Increased amounts of Vitamin D can cause the increased absorption of calcium. Hypercalcemia can cause a number symptoms including memory loss and confusion and once corrected symptoms are reversible.
If you still feel that your mums care is being compromised then as DEB1801 suggests contact PALS (patient advisory service) Every trust has one, and they are trained to assist with this type of situation, They can sometimes act in a liaison role. They can be a great friend at times like this.
The most important issue here is to make sure your mum is getting well cared for and that you and those with you are happy with the care plan put in place. Remember that you also need to look after yourself so that you can be there for your mum as much as you wish. It is a very stressful time for you all. If there is a Maggies center on site it may be worth a visit, sometimes they have therapists that can help family members and carers. Sometimes this can involve massage therapy or counselling and at times like this can be very worthwhile. Remember you too need coping strategies. If there is not a Maggies center then it might be worth visiting your GP.
I do hope things improve for you all and that you can get a care pathway put in place that you are all happy with.
Please also remember you can speak to a Nurse on our Helpline 0333 323 7200 Option 2.
Please take care and take things a step at a time.
Thank you & your colleague for your informative replies. It is very much appreciated. I hope things improve too. I am grateful for all of your comments. !
Thinking of you. Got my fingers crossed for you that the antibiotics kick in and you get to have more time ans good memories together. Regardless, just having you and the family sitting, and chatting to her will be a comfort to her, even if she doesn't seem to register your presence, she can probably hear you. Remember to eat and sleep. This a tough time. Kx
So sorry about your mom. And yes the Dr's should have helped you and your family with palitive care or hospice, they should have going through all this with you. Was there no medication available for your mom when chemo didn't work ? Call the American Cancer Society and maybe they have some suggestions, on care or ? Good luck to you
Bless your heart Jo. I don't know what to say to you, others on here have given great advice.
I just feel so sad for you as you must be very frightened. As a carer myself (for my hubby) I understand how hard it is watching someone you love so dearly having to fight this god awful disease.
Please try to take care of yourself if you can, I know it's difficult and I hope you have family and friends to support you.
Thank you for being so kind & taking the time to ask how I am!
I'm really not good & not coping well! I miss my mum terribly. I do have some comfort in that the funeral was last Monday & was able to bring mum home Wednesday so she's back where she belongs!
I cry constantly & can't believe I'm never going to see her again! I guess it's gonna take a long long time!
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