NEED MORE COMPASSION IN THIS WORLD

My wife of 40 years has recently been diagnosed with stage 1V breast cancer, and it is also pretty severe in the bones. She has had 7 months of treatment, mainly through monthly injections and a pretty heavy dose of radiation at the beginning. She has now been diagnosed with a small tumor in her Thyroid. She has never been ill in her life, so this has all  come as a pretty big shock.

Our main complaint is the lack of compassion she is shown by the specialist and the support staff around her, through their negativity.

It started with her having a bad back pain. So we went to our local GP who thought she had torn a muscle, and requested she have an xray. Whilst having the xray, they contacted the doctor and suggested she should have more tests. Nothing was said to my wife. So without any discussion, a 30 minute xray appointment became a 4 hour session of tests.

We then received a phone call from the GP, who stated she needed to see my wife urgent. We were taken into a consutancy room, with the GP and a trainee doctor present. She then informed us of the result of the tests showed stage 1V breast cancer, and also bone cancer. She informed us she would make an appointment with a specialist and then contact us.We were then ushered out of the room.  Whilst at the counter paying the bil, she looked at my wife and asked is she alright, to which my wfie replied she was scared. The doctor then just smiled at her and went off to her next appointment.

At the appointment for the specialist, we were seated with a registrar and a nurse. They then confirmed the details of the diagnosis and asked if we wanted to know the prognosis. We stated "no" as we were going to do all we could to fight this, to which we were told  "you have 2 to 8 years to do so". We informed them that we had made arrangements to have an overseas holiday to be told " You may as go whilst you can". The specialsit then came in and explained treatment planned and we left in a state of shock.

We are determined to fight this, and if we are unable to cure her, get as much time as possible and enjoy our life still. Yet when we try and discuss this with the professionals, they have the attitude that we should just have the recommended treatment and face the inevitable.

Apart from the treatment given, we have researched and changed her diet and eating habits, as well as implementing some vitamin and mineral supplements. We have found a physio who treats cancer and is going to devlelop an exercise treatment. This was all implemented by us, after discussions with her new GP. When my wife had her 2nd  quarterly review, she informed the specialist that we had changed diet and increased some supplements, to which he stated whatever as he did not believe it would make any difference.  At her second quarterly review, the specialist was amazed at the resuts we have acheived. There has been a huge increase in bone density, and the cancer has not spread. The Thyroid was discovered after this and we are waiting for treatment on this.

My wife is still working full time, and is in excellent health otherwise. She only has treatment every 3 months. It is a different specialist for the Thyroid. Her employer wants to give her a weeks holiday overseas. We have also made arrangements for a seperate 2 week holiday overseas later in the year. The insurance company requested a letter stating she is able to travel. They have refused this, as they are worried the insurance company may then take action against the specialist, if she should get injured. Even though they stated we should go "whilst we can".

The attitude of the specialist and staff comes across that we should have the treatment to postpone the end and wait. She feels positive and is encouraged by the results, and then comes out from seeing the specialist stressed and upset after discussions with the professionals. We feel that others have beaten this terrible disease, and surely a person who has never been ill in her 60 years should also have the potential to do so. Or at least try and get as much out of life as possible.

I apologise if this has been a bit long winded, and also if I have upset some people, especially those in the mediacl profession.

But please think of the person you are treating as an individual and not just one of many. I realise they mean well, but all people are different, and should be treated so.

 

  • It would seem this is normal treatment.   Call from GP out of the blue as previous x rays showed small infection.   This had been going on for months,antibiotics, steroids,  x rays no talk of lung cancer by anyone in the medical profession.   Within a week a scan showed 8cm tumour, called in urgently to our GP practice,  sorry bad news you have cancer.   Off you go and have a nice night!!  At the beginning you are on your own, until the appointments take over, our Consultant actually asked us what we thought it was,smiling at the same time.  Our hearts soared thinking we were wrong, he's going to say Yippee you haven't got cancer,  how stupid were we!  Our oncologist has been very helpful to us, apart from losing consent form and dragging us back to the hospital at 5 pm in the middle of chemo to re sign another one.  Have they not heard of the Royal Mail?  Hang on in there,  do your own thing, like we are, accept the treatments and live your life in between,  the medical profession can only do so much,  we have to be responsible for what we do in the meantime.   Good luck to you both, my prayers are with all those going through these darkness.   Carol 

  •  

    Hi Gone2dogs,

    I am so sorry to hear about the lack of compassion in your wife's treatment. I had a similar experience for 11 months, before I finally changed hospital and consultant. What a differenve that has made! The only down side is that this adds an extra couple of hours on to my travel time to and from the hospital, whereas the original hospital was on my door step. However, the change has been so worth it.

    I am now addressed by name. My husband is made to feel welcome when he comes to my appointments. All treatment options are given and fully discussed before any treatment plan is drawn up. When I was in hospital for my double mastectomy I found that I had been allocated a single room to myself because I was the only person having a double mastectomy. My breast care nurse was there to talk to us all before surgery and gave me the option of going into a ward for 4 or staying put in my single room.

    I have had two bouts of primary breast cancer, but I have always been given the diagnosis face to face. Appointments have been made at times to suit me where possible.

    You shouldn't have to put up with shoddy treatment. If you are unhappy, is there nowhere else that you could go? You are fully entitled to ask to be moved to another hospital, but make sure that it has a good consultant before you decide to move. Your GP may prove helpful, as s/he may know of the reputations of some of the better doctors.

    It makes such a difference to have faith in my surgeon again and, on any cancer journey, you really need the reassurance that you can fully rely on your care team.

    I hope that things improve for you both.

    Kind regards,

    Jolamine xx