Husband's prognosis

I took my husband to A&E on the 23.8.2021 as I thought he might have had a stroke, he was getting his words confused.  After a CT scan we were told he had a large mass on his brain and might have to be rushed to Leeds for surgery, we live in Bradford.  They then said they were admitting him to a ward and putting him straight onto steroids.  A week later he had an MRI can and we were told he had Lymphoma, but it was treatable.  A week later we were call into a private room and told that the mult disaplinary team which included a neuro surgeon at Leeds had confirmed that the tumour was Glioma (GBM), high grade and very aggressive and was too far spread for any treatment and they were discharging him for pallitive care, he was discharged on the 15.9.21 having never left the medical admissions ward.  We were then told we coud have a meeting with the consultant in Leeds a week later, if we wanted to.  We attending an appointment on the 22.9.21 and were shown a scan of my husbands brain and where the tumour was and where it was spread.  I then asked what the prognosis was given no treatment was possible and basically was told everyone was different, I said I had looked on line and found that without treatment 2 to 3 months and with treatment 1/2years.  He responded the first of the latter!  which has left me confused and no one is telling me, the district nurse and pallative care specialist nurses tell me to take time off work but no one will give me any idea of any timescale which is causing me a lot of distress and I would much rather no what exactly I am dealing with so I can plan.  Has anyone else been in this situation and can give me any advice?

 

  • Hi, so sorry to hear what your going through my husband had no symptoms but went to the hospital for something else and was given a scan and told he had a GBM tumour like your husband immediately put on steroids and after a 2week stay in hospital was sent home to await surgery. They managed to remove 98% and were very positive, he started radiotherapy and got through xmas/new year doing that with ease. Due to start chemotherapy March time and went for a scan (his first since surgery) early February when they gave the devastating news the original tumours had returned and also new ones on the frontal lobe. They gave him 6weeks but he is still here fighting today ️. He is becoming poorly now and symptoms are advancing quickly BUT the fact he has surpassed there time scale just proves they can only estimate time people have as each person is so individual. We take one day at a time and although my husband can't communicate with me anymore verbally I still sit and chat away and enjoy his company. Sending my best wishes to you both xx

  •  

    Hi Mholmes,

    I am so sorry to hear of your situation. Like Honeybee, I have been in a similar situation with family and, I agree with all that she has said. Most of us want to know what sort of time frame we are looking at. The prognosis that the doctor's give us is, at best, a 'guesstimate'. Some people will go before this, whilst others will pass way long after this.

    I feel for you, as I know how hard this is. It is especially difficult when it has all happened in such a short timescale. Do you have family and friends to support you? It is difficult to take time off work when the exact timescale is unknown. You just have to go with your gut feeling on this.

    It sounds as if his consultant thinks 2-3 months. In this time you may notice further deterioration and may eventually need the help of carers or special equipment. These are all available if neded, so don't be afraid to ask. Do you have any medical support at home? This is something that can be provided too. His nursing team, can often tell you more about his prognosis as time goes on.

    Please keep in touch. We are always here for you.

    Thinking of you and wishing you the strength to see this through.

    Kind regards,

    Jolamine xx

  • Thank you for replying, it sounds like your husband is a real fighter and has been through the mill.  I take on board what you are saying and will try to just take a day at a time.  Thank you and all the best to you and your husband. xx

  • Again, thank you for your reply.  We do have specialist care nurses and disctrict nurses contacting or visiting us at present.  They had told us they were visit more often when we need them to and will arrage anything we need as my husband has stated he wants to remain at home until the end.  It is hard to talk about these things when he looks so well, despite the fact he is struggling with words, tired and not showing emotion.  It is just the not knowing and everyone being vague yet asking about where he wants to spend his final days and does he want and DNR in place, it is just so surreal.

    x

  •  

    Hi Mholmes,

    I am glad to hear that you have contact with specialist care nurses and district nurses already. Don't be afraid to ask them for anything you need. I can understand your husband's desire to be at home to the end. This will impact upon you. Do you have anyone to support you at this time?

    It is difficult to talk about end of life when he appears so well, but things can change quickly. If your husband is willing for you to talk to his care team, you may find that they will be more open with you, if you ask some very direct questions. 

    I am always here for you.

    Kind regards,

    Jolamine xx