Update on my wife

Hi,

there has been significant developments with my wife's condition, since my last post which stated that she had infection, which was controlled, then her kidneys started to fail because the OC (rare and aggressive OCS) had come back with a vengeance and started to press against her ureters to stop urine flowing out of kidneys. They remedied this with kidney drainage and stents. However, she is also malnutritioned and is being fed by an NGT 20 hrs a day, which is causing swelling and bloatedness. Meanwhile after a week, her abdomen has grown substantially and hardened.

Today doctors said that they have tried everything and that the cancer just keeps growing ans is starting to affect her bowels. They have now suggested that we start preparing for the worse. My wife is under increasing pain, bed-ridden and unable to eat properly still. The chemotherapist says she is too unwell for her to undergo chemo and that it would not cure it anyway at the rate it is growing.

They are4 suggesting that all they can now do is keep her comfortable and to start looking into moving her into a hospice.

I am looking at getting a second opinion from the Royal Marsden hospital (she is presently based in Margate QEQM hospital). Chemotherapist says that whatever the case my wife is too frail to have chemo.

I feel that they are accepting the end game here and this is hard to accept. My wife, although very weak, is still able to discuss and understand the situation and is not keen to pursue a second opinion as she thinks it will make no difference.

I dont know what to do now and feel totally helpless. I cant let her go.!

My wife's brother and sister have come to support her.

I have broke the news to our 16-yr old daughter, who has been so brave throughout my wife's ordeal.

We are still hoping for a miracle that my wife gets stronger soon to start chemo.

I dont know what to do now and feel totally helpless. I cant let her go.!

23 Replies

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  • I am broken hearted, for you and your family and can only offer prayers. My Mom's cancer is also affecting her uterus since it has grown so largely in the kidneys. Stents are about to be placed in on Wednesday. Know that you are not alone with this fear for a loved one but although it is difficult you must hold strong for her. She needs you more than ever as the road ahead may be difficult. I pray that she pulls through this and has a miraculous break through. May God bring ultimate comfort and healing to you all at this difficult time.

  • Hello, Pamnani. I am very sorry that your wife is so poorly, and that this stage has come far too quickly. It is clearly very hard for all of you!

    Please do listen to your wife and to her doctors - it sounds as though she may feel that hospice is the right thing for her at this time. Hospice is likely to be able to provide better pain control for your wife, so that she has a better quality of life. Sometimes that in itself is enough to prolong life significantly, and if that doesn't prove to be the case for your wife, at least she will be more comfortable.

    I lost my mother to cancer four years ago, and we wished that we had been able to get her under the care of the local palliative care unit sooner - her last days would have been so much more comfortable! As it was, she only had the benefit of their care for one day.

    Hugs to you, your wife and your family. May you find love and joy in the time you have left together, however long that may be!

    Barbara

  • Hi, Very sorry to hear about your situation. If I were you I would absolutely go to the Marsden for a 2nd opinion. They have so many trials going on as well as established treatment that at the very least you could discuss with them.

    As for curing it, well perhaps not, but not curing doesn't have to mean the end. If your wife was able to get treatment, maybe even tablet based, that she could tolerate easily and helped her current symptoms, then that in itself could open up other possibilities.

    I have been in your shoes and I can empathise with you, I wish you both the very best......go for the 2nd opinion. At the Marsden in Sutton was a Doctor.... Suzanna Banergee, the best Doc my wife ever saw. Take care of yourself.

  • Oh my, I'm unsure what to write here other than the obvious, know that we are here for you.

    For your piece of mind have you considered talking to an agency like Macmillan, you can rage, let out your emotions but know that you can also be there for your wife and daughter. Macmillan also have a young teenage online help group for people such as your daughter, I've looked into it for my own 2 children. Schools and colleges can also access support for her.

    Your wife does sound like she knows what she needs to do and as hard as it is going to be for you, this is going to be the most important thing you can do for her now, support if not quite accept what the decision is.

    I wouldn't say there is any harm in asking for a 2nd opinion, if only to have that settled in your mind that you tried. They can look at your wife's file and can make a judgement call without having to see her, as I think the effort of physically going there would be too much in her current state.

    Look after yourself as much as you can so you fit to look after your family..

    Best wishes

    Dawn

  • I'm so sorry to hear your news and wish I had answers. As has been said a second opinion is good if helps you feel you have done everything you possibly can and also may of course actually help and I really hope it does. In the meantime look after yourself as best you can and your wife of course and hopefully they can make her more comfortable. Sending hugs and healing. Stay strong! X

  • Wishing you and your wife and family strength. What a terrible ride you are on -hugs and healing thoughts being sent your way.

  • This is so difficult for you and your wife, but your wife's siblings arrival will help her I'm sure. I agree that the Marsden would be a good place for a 2nd opinion. Then you and your wife would be comforted (I'm unsure if that can be the right word here) that you have looked at all treatment options. It seems immediate pain relief would be high on the list for today. From more experienced voices this seems to be perhaps more accessible from the hospice. Does thinking about a hospice feel like giving up somehow? Your wife's comfort must be paramount. Then she can spend time with your young daughter and rest and talk.

    I hope this site is helping you a little at this very difficult time. Your wife needs your strength but you need support too.

    Your wife and yourself will be in my thoughts and prayers.

    T. X

  • Is she open to some alternative holistic treatments, I have been reading io about the Arcadia clinic in Germany, not extortionate compared to others. Wishing you and your wife all the best xx

  • How horrible for you. Listen to your wife, and get support for you and your daughter . Sending you lots of love at this tough time

    Dee

  • So very upsetting to read your post, I feel very much for you. Is your lovely wife in the hospice at QEQM or in the ward? My father died of cancer in there, in "Cheerful Sparrows" ward of all names. I only wish he had been put into the hospice there as we had little privacy with him. The word hospice strikes fear but they are the BEST for controlling pain, giving both patient and family more comfort and control. I know this from many friends who have ben in your situation. I myself will be at QEQM today for chemo, my second. I have no fear of going as I found the staff and unit to be lovely. Which oncologist is your wife under, I am with Mr Waters and under Mr Norden, I feel more reassurance with Norden. The hospice will ease her discomfort and pain, and is often just a temporary stay to make her stronger. I shall be thinking of you when I am there today. Much love, strength and prayers. x

  • Oh Pamnani I am so sorry to read your news. Much love to you and your wife whatever you decide to do. Lyndall xx

  • Hello...

    I'm very sorry to hear about your wife. As you will gather, this is a very supportive circle with a lot of people who've been through the mill as either patients, carers or loved ones.

    I can't add to what's already been said except to wander if your wife is well enough at the moment to travel. Maybe you could decide whether to think about a second opinion once she's at the hospice and has her pain under control. As has been said before, the hospice staff are the pain control experts. I was referred to our local hospice where my quality of life was improved beyond recognition. Also, I've seen the difference between how pain is controlled by the hospital and how a patient is dealt with at the hospice. Some drugs are specifically licensed to be used in a certain way by hospice staff and they have the expertise, time and patience to tweak the medications to get the right combinations and doses right.

    Sending love and hugs to you and your family. Xxx

  • I'm so saddened to hear your news. I too think a second opinion would be worthwhile as I think it can be done by looking at her file and viewing the scans and tissue samples that would have been removed during surgery. It's important to get adequate pain relief to help build up her strength and that may be better achieved outside of a normal ward. I'm sure you wife's brother and sister will be a great comfort. My best wishes for you all and your daughter. Helen

  • I'm so desperately sorry to hear of your wife's latest developments. That must be very difficult for the whole family, including her. It's tricky knowing what the best thing is to do, but I think listening to firstly your wife and then her medical team is a good starting point. I know when i was caring for my darling Mum, who we lost over 3 years ago now, once it became clear there was little more her medical team could do for her (other than Palliative Care) she wanted to ensure the time she had left were comfortable and as pain free as possible. She didn't want to spend what little time she had left being bounced from one hospital to another, from one trial to another. Her time was precious and i understood that (despite every shred of my being wanting to do ANYTHING to help fight this evil disease!) She also didn't want to go into a Hospice and so i moved heaven and earth to ensure I could continue to care for her at home until the end, which is what we managed to do. I know this is a terribly sad and difficult situation for you all and you are very much in my thoughts xx

  • Hi,

    I am so saddened to read your news especially having been in the same position. Your love for your wife shines through your post and I completely understand your feeling of helplessness. But you are not helpless, not in the terms of supporting her. On that level she probably needs you more than ever right now.

    As my Angie deteriorated and was told by her onc, that no more could be done, I was angry, desperate and hurt. I couldn't bear to let go and wanted her to get another opinion from the Christies as we had discussed. Angie refused. Not only did she not believe it would make much difference, but she couldn't face the journey there. She told me that she had dealt with cancer on her terms and she intended to do so until the last day. She wanted to enjoy her last few weeks in the company of those she loved. Of course that was difficult to accept at the time... it seemed she was giving up. On the contrary though, she was doing what she always had... living every day with cancer before ever dying from it. As I look back now, I know she was right. While those weeks have some of my worst memories, they also provide some of the most treasured too. The love, trust and intimacy we shared produced some very special moments that I will hold on to forever.

    Of course what was right for Angie and I is not necessarily the path for others and I would never try to tell you what is right for you and your dear wife. I only wanted to express that there is no defeatism in accepting your wife's preference. What ever is decided, I wish you strength and peace and hold you both my thoughts.

    Andy

  • Andy thank you for your words - they are very powerful and heartfelt. Your Angie would be very proud - again thank you ☺

  • I am very sorry to hear the news. Many prayers of strength are being sent to you and your family. Together you and your wife will make the best decision for her. Big hugs to all.

  • So very sorry to hear your latest news. You are all in my thoughts. I do hope that you can all make the decision that is right for your family. xx Kathy xx

  • I'm so sorry your in this situation. from my own experience, all I can say is that you can only make the best decision you can, with the information you have in front of you. If you feel you need a second opinion then go for it. hindsight and what ifs are no good to anyone...you just have to go with your feelings right now. prayers are with you and your family x

  • Dear Pamnani, I am so sorry to hear the news isnt good. It is a hard one perhaps think what is going to make your wife happy and peaceful for the coming weeks. No one is prepared for this even though you see it coming, If Royal Marsden can look at your wifes files and reports, there is no harm at all, It is hard to make a decision and it is hard to advise you, What I would ask myself and this is what I did when my late mother was ill, is what do you want, my answer and my siblings answer was dignity. So we left palliative care take over and my mother was comfortable no pain. I do wonder was it the right decision as one surgeon still wanted her to go to theatre for a peg tube. But I think really it was the best thing as she had dignity and no pain, Hope this helps you and sending you the best thoughts and to your lovely daughter.

  • Dear Pamnani, I am so sorry to hear your news. My thoughts have been with you since your last post. I can only send you love and best wishes, whatever you and your wife decide to do.

  • Praying for peace, strength and comfort for you all. Don't lose hope until hope works against you. xx

  • I am so sorry prayers to your wife ,you,your daughter and your whole.family...may God bless her and heal her of this terrible disease

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