Hi Thairashid,

I am so sorry to hear about your wife’s diagnosis and now her prognosis.

I am not a medic and know nothing about her type of cancer. I have had 2 bouts of primary breast cancer myself. When her cancer is still localised, have you asked her consultant why they cannot do any more for her? I am sure that, even if there is no further treatment for her cancer, her care team will endeavour to keep her as comfortable as possible and, will continue to take care of others symptoms, such as her current infection. Just for your own peace of mind, confirm this with her care team.

Why not draw up a list of questions to ask her consultant, next time you see him?

Please keep in touch and let us know how you get on. There is always someone here for you whenever you feel like talking.

Kind regards,

Jolamine

Hi Thair,

I am glad to hear that you have expressed your wishes on how you want your wife treated. Like you I am a little puzzled as to why her cancer is untreatable, when they say that it is still localised. Have you asked her consultant why this is so? Could it be that she is just too weak to undertake chemo?

It might be worth speaking to one of the nurses on this site to see if they can shed any light on why her case is untreatable. You can write to them on the 'Ask the Nurses'section of this site or, if you want to get a quicker response, why not phone them? Their number is freephone from a UK landline and they can be reached on 008 800 4040.

Is she having a lot of bother with Lymphoedema? I have it in both arms and hands, but I am fortunate enough to attend a Lymphoedema nurse specialist for two weeks every 12 weeks. The nurse does some manual lymphatic drainage on both arms and hands and then she bandages both arms and hands. When I started having treatment, I was hitched up to two machines to carry out the drainage, but it didn't work, so I am now fortnate enough to have it done manually. I know that such facilities are difficult to find. Do you have anything like this in your area?

Have you been taught how to drain the lymph into the larger channels and how to avoid spreading it around the body? It must be very stressful for you to go up to the hospital twice a day? I hope that you live nearby. .Sometimes, you don't realise how much visiting a loved one takes out of you, even for a short time. If you've been doing this for almost a year, this must be taking it's toll on you. You need to try and take care of yourself, as you are no use to your wife if you fall ill.

I hope that you manage to get some answers from your wife's care team. It would be so much easier for you to accept the prognosis if you knew why it has been made.

Thinking of and praying for you both.

Kind regards,

Jolamine

HI Jolamine I had the chat with the ward manager today and asked her to explain to me why have the concluded nothing can be done at this stage considering the tumour is localised even if it is growing, I know one of the reasons is that she is very weak and whilst I accept it would not be wise to offer any form of chemotherapy during her present condition, I expect them to help her to fight the infection and work towards getting her better so she can start on immunotherapy. I will also give the nurses a call tomorrow and get their expert opinion, the oncologist did say that if he felt there as a chemo that would benefit my wife he would do that.

Yes it is exhausting with all the hospital trips it takes a total of 6 to 7 hours of my time doing 2 trips, in the morning I go and again in the evening I take my son who comes back from school and wants to visit his mom.

Unfortunately my wifes lymphedema is not being treated by anyone, I am just massaging her face to try and drain the fluid from the face and eye. I have  also told the doctors I expect a further review of wifes condition and whilst my wife has deteriorated they cannot say if this is the cancer or the infection. I will also ask for a second opinion next week.

Regards

Thair

Hi Thair,

It sounds as if you are pretty much on the ball in asking the right questions. Your wife's care team are certainly the best people to talk to, as they have all of her medical records to hand and know how weak she has become since going into hospital. It sounds to me as if her infection may well be a contributory factor in her weakness developing.

If her care team continue to fight her infection, she may well pick up again. Her confusion may well lessen too. Maybe she will become a suitable candidate for chemo or immuno therapy, as she beats her infection? Because she is so weak, it may take her quite some time to beat this infection, Possibly her doctors don't think that she is strong enough to fight this and that is why you have been told that it is untreatable. I am glad to hear that you will phone the nurses here tomorrow, when I hope they can help you.

I feel for you, when you feel so alone in fighting the system on your wife's behalf. What age is your son and how is he coping with his mom's illness?

I had similar problems when my mum was dying. She was in a hospice for the last 4 days of her life and agreeing to send her there was the biggest mistake we ever made. The treatment she had there was atrocious and I was so glad that we were there to see to her needs.

Have you asked if you could get a Lymphoedema nurse specialist to see your wife regularly? You may not have access to someone, but there's no harm in asking. Getting a second opinion sounds like a good idea.

I do hope that you get some satisfactory answers this week.

Stay strong.

Kind regards,

Jolamine

Hi Jolamine You absolutely correct that the team think she will not be able to overcome this infection and unless she does improve there is very little they can do, I can't just stand by and see her slip away and asked them to treat her infection.

We have 2 children, 21 year daughter who is at University and on her third year, she is doing a medical degree and whilst she does understand her moms condition she says there littel chance the tumour will kill her as it on her tissue and not on an organ. Her brother who is 13, I think knows his mom may not make it and we had a chat a while ago and he has seen his mom suffer for so long, his mom has gone from someone who was able to speak, eat, drink and lost the ability to do this and more. Up to last week she was doing her own meds, put them through the PEG and also fortisips via the peg, wash her self etc. Ironically they were trying to persuade me to let my wife go into a Hospice, which I refused, I said first and foremost I have very little or no trust in hospice care or nursing homes and secondly if nothing can be done then I rather have her home and receive end of life care at home or she remains in hospital. They have very little or no choice and accept that.

I have started doing some facial massages after doing some research, which I hope will help with the draining and I have also started giving her some superfood juices via the peg, it won't do any harm and maybe help her to rebuild her strenght. As I said to them on Monday my wife desire last week was to continue with the chemo, so right now I am here to make sure they fulfil her request and not to give up on her. Their prognosis, is too vague we think there is something happening with the cancer but still localised and or it may the infection. One thing I have said to them is her cancer which is a reoccurrence it happened under their care with months and they refused to believe it was cancer but just post surgery or radio pain. Eventually 3 months later they did a scan and it was cancer.

Regards Thair

Hi Thair,

Just you continue fighting to get the hospital staff to fulfil your wife’s requests, unless they can give you a satisfactory reason for withdrawing treatment.

What a deterioration she seems to have had in just one week. This must be very hard for you and your son to cope with. I remember my mother failing as quickly and know only too well how heart breaking it was to watch.

I am glad that you can manage to have a good heart to heart talk with your son. It is so much easier for all the family to cope with things when you can all be open with one another. Your daughter is at the same stage as my son was when I was diagnosed. He is a dentist, but was at university at that time. I hope that all this worry about her mom doesn’t  interfere with her studies.

With regards to her recurrence of cancer and the fact that the doctors didn’t believe her - this seems to be a fairly common occurrence. I saw my consultant 3 weeks ago, as I thought that I might have some metastases. I have had 2 primaries and didn’t believe that I could be lucky enough to have a third primary. I had a radioactive full body scan and I was assured that it was good news. My consultant advised me to keep my routine annual appointment next January, just to check that there were no changes. Three weeks later I have received a letter giving me an appointment for 11th November. There was no explanation whatsoever as to why I am been recalled early, but I can only presume that there is something untoward after all.

Did you manage to phone one of the nurses today and, if so, were they able to clarify anything for you, or what was their advice? Make sure that you have a word with her consultant too and see what their explanation is about not being able to offer her any further treatment, despite her cancer still being localised. I agree that the explanation given may well be that she is currently too weak to undergo any treatment, but it might be worth talking about what could be done to help her if her strength builds up. Hopefully the fortisips and superfood juices will help to build her up some more and you will be able to consider treatment again.

Kind regards,

Jolamine xx