Strong to weak.

I’ve lived pretty well on Pembrolizumab infusions and Axitinib tablets for coming up two years. Two years was my prognosis, maybe a bit more.  Reaching this stage has flipped me over from active, sociable etc to being in a huge hole I just can’t pull my self out of. I want to continue to enjoy the time I have left but my extreme fatigue and tendency to cry at any time is holding me back. Gp gave me fluoxetine, no follow up, and it’s not helping. Rambling was my life (with my husband) but if I do forty minutes I have to go to bed and sleep!  I’m really holding him back. I got an electric wheelchair which is good for pavements but not so on country paths!  I got a tummy belt to hold my tumours from getting rumbling around in the chair which helps a bit. How do any of you deal with fatigue and being ‘grounded’ most of the time? I’m not used to complaining, I have usually just made the best of things but I don’t really see my life as worthwhile any more. 

  • Hi  a very warm welcome to the group, but so sorry you find yourself here. I am sorry to hear that you are struggling at the moment. It is hard when we can no longer continue with the hobbies we love so much. Please don’t feel like you are holding hubby back, I bet if you talked to him he would say he is just as upset for you as you are for him. 

    It is so easy for GP’s to chuck pills at people and send them on their way. Did you ask you if you had thought about counselling. This may not be be for everyone, but it really is beneficial to talk to someone about what is going on. Do you have a Maggie’s centre near you? These are great drop in centres that give support for people with cancer and they help with counselling and exercise to help with fatigue etc. 

    You can also call the Macmillan support line on 0808 808 00 00 they are available 7 days a week from 8am until 8pm. I know a few people in the group have phoned them and found them very helpful. 

    All of us here in this group have an incurable cancer, so we know what you are going through. Everyone here is very supportive so I hope you find you settle into the group well with us all. Nearly always someone here to chat too xx 


    Try to be a rainbow,in somebody else's cloud
    Maya Angelou

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  • Hi there (again) and well done for finding us.    

    I think we all find our ways of coping with the incurable tag and it's different for everyone.  No one size fits all.  It can take time.  It's definitely different with few physical symptoms as opposed to when the treatment isn't going well, or there are side effects.  

    I just wanted to say "hello" - I am sure more of the others will be along soon posting additional insight.  We're here all the time, always a listening ear here.  

  • Hi You said you was in to Rambling, so to me you are an outside person, have you thought of some thing else, that you would find interesting, out side to do with nature, Bird Watching,, comes to mind, pair of binoculars, and you can use your chair for that if needed,  There is plenty of wild life, or Flowers, insects, i am sue you will if you think yes i could try that.

    You are not a lone as others have said, we find a way of doing things differently, not the way we new, for some that has gone,

    We all perhaps at times fill  like we may be holding our nearest and dearest back, that is not how they fill, if the truth may be told, though you will always get one.

    Please use the group when ever you wish to moan, rant, or just how you are filling, we all have done it, and always some one listening, who may be able to help,or just say, thatch how i fill.x


  • Have you thought of getting an off road wheelchair.  Not sure if they can be hired.

  • Thanks Michael, I’m seeing a counsellor tomorrow!  I think I’ve just hit a wall, having put so much effort into living my best life with this prognosis for so long. My brain needs reset!  Nancy 

  • Hi Ellie, got the binocs, camera, have been watching birds and wild flowers for years, love it, just so very tired just now. Thanks for your input, Nancy 

  • My wheels fold down and into the car but the off-roaders don’t!  However, I could think of maybe a wee hol where I could hire one sent to me somewhere with adjacent ‘walks’. We have a caravan in the Cairngorms but the walks mostly have to be driven to. 

  • Hi Noplanb, sorry to see you here but welcome I seen the post of this fabulous group we don't all have the same medical problems or treatments but we all share the same emotional experience, I was told 24 month's also but it's only a guess not a definite sell by date, so stuff it life is for living.

    When you go to your caravan, hire the wheel chair and a van to carry it in and go rambling.

    All the best Ulls 

  • Hello Noplanb, Feeling exhausted is very common amongst us and we all develop different coping strategies. I'm an artist and over time I've had to change my working practice to be able to continue. Painting and sketching is definately something you can do from a wheelchair. It's also good in that you can absorb yourself in doing it . It's a great way to stop thinking about negative things. Do message me if you think you'd like to give it a try. Anybody can benefit. Hugs. Rainie x

  • Hello Noplanb, do you qualify for the mobility section of PIP at all? Excuse me for asking but I use a powerchair and due to Motobilinity I was able to get a car that I just drive up the back of. I don't drive so my husband or kids take me where I need to be. Admittedly not off roading but there is countryside with flat paths now if you are lucky enough to live nearby some.

    Dealing with fatigue is so hard and unfortunately I can't help you there as I'm still looking for an answer myself. 

    I don't know if I'm allowed to say this but there's a company called Limitless travel that has all different types of holidays using accessible vehicles etc. I haven't used them myself yet but there are many different things out there. Xx