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Chemo brain

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lors23
lors23

My mum has recently went through 4 week of aggressive chemo and radio treatment for cancer in her lung that was unable to be operated on because of where the tumour was so the only option was this treatment. She is 75 but when l say that she was a very fit and healthy 75 she still had a jib she was very clever and switched on. Her treatment finished 3 weeks ago and since then we new she would have side affects she was exausted as to be expected and for the 1st 2 weeks slept mostly and lost her appoetite. It looked as if she was getting over the worst of it when all of a suddon she became very confused and it was like she had alzimers she started thinking there was something wrong with her legs but after many tests there is nothing medically wrong with her. She seems to have all the symtoms of chemo brain x 100 . We realise now she is suffering from very bad anxiety thats basically took over the person she was. She is pacing the floor as her brain is telling her she can't sit down she gets very aggitated and has lost all her cognatuve brain funtions. No matter how much we try to talk her out of it she is not getting better. We have told the hosptal and her doctors but they don"t seem interested because its not anything medical. But right now we have lost our mum to this. We don't know what to do to help as its that bad she is not in control of her own mind and is acting like she has alzimers asking the same questions over and over. She is in lorazipaine vut at 1st they prescribed 1 tablet per day to be halfed. We have now been told to give her more because she is so bad but my dad is old school and does not beleive in giving her more even when she is asking because she can feel it coming on but he says no abd waits until she is to far into a panic attack that half a tablet is not really working. The familys at there wits end. Does anyone know someone who has had this reaction. Or what could help.

Thanks

Laura x

0 likes, 43 replies

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  • lynda20916
    lynda20916 lors23

    Posted

    So sorry that your mother and your famiy are going through this!  There are very real consequences to those types of treatments, physical and emotional. When your mother consented to the treatment she and your father should have been fully informed of the side effects of the medication and radiation that she received. If you can find out what she was treated with, you can look up the side effects yourself, on-line.  

    Unfortunately, at this point, she may not be capable of understanding you when you try to reason with her.  It is understandable that she is suffering from the disease, the treatment, and the accompanying anxiety.

    Have you been able to speak with her doctors?  In the US, you must have her written permission to do so.  I suggest that you make an appointment to meet with your parents and her doctors to discuss her treatment.  Unfortunately, many older people (especially men) do not question treatment protocols or seek second opinions.  If your family is dissatisfied with the medical treatment your mother is receiving a second opinion could help.  

    I hope this helps.  Please let me know what develops!   

  • lindathepinda
    lindathepinda lors23

    Posted

    I'm sorry to read about what you all are going through, it must be so hard to see your mother change like this in such a short period of time.

    I'd recommend to contact your country's cancer patient society and ask for advice. Also about the best treatment centre, since it doesn't sound all too professional how your mother's cognitive complaints and your worries as her family are handled.

    A decent cancer treatment centre offers sufficient after care and counseling to their patients and their relatives, it shouldn't be necessary for you to ask for help online.

    What I get from you post is that you know about chemobrain. Although the damage is complex, you can support her recovery by having her vitamin levels checked and giving her probiotics, since some of her vitamines will be depleted and her intestional microbiome will be diminished. For the brain to recover it needs nutrients, without a properly functioning microbiome it is impossible to absorb them.

    Also; exercise helps in neurogenesis, it actually beats all available medicines for dementia. Go for long walks with your mother, as much as she can handle.

    These strategies take patience, but will be beneficial on the long term. Count on months to see results.

    Till you have found a proper treatment centre, I would ask your GP to convince your father to let your mother take a whole tablet of lorazepam (am I correct this is the medication?). Though this is quite heavy stuff, and I wonder if any other medications were discussed. You might want to ask another doctor about this.

    I wish you a lot of strength, and good professionals to guide you through this, make sure you get the right help. There isn no need whatsoever to stick with doctors if they don't offer the right service. For this the situation is too serious.

    Take lots of care, I wish you all the best.

     

    • JoyKF53
      JoyKF53 lindathepinda

      Posted

      Hi. Would just like to say that you have given excellent advice, I too think she should see a different doctor. You obviously know a lot more about chemo brain than I do. I only had 3 rounds of R-chop so the chemo brain was minimal, thank goodness. This forum helps so many people, I'm so glad I found it.

    • lindathepinda
      lindathepinda JoyKF53

      Posted

      Thanks Joy, I hope it is helpful for lors23. Glad to read you find support here, there can't be enough of it if you have (had) cancer.

    • JoyKF53
      JoyKF53 lindathepinda

      Posted

      Finished treatment for lymphoma a year ago now have a small brain tumour (meningioma).. Could be worse, have had excellent treatment from all my doctors.
    • lindathepinda
      lindathepinda JoyKF53

      Posted

      Sorry to hear about your illness Joy, but am glad you feel you are in good hands, it makes such a difference in how one experiences ones  illness and all that comes along with it.

      Are you being treated at the moment?

    • JoyKF53
      JoyKF53 lindathepinda

      Posted

      Hi. I finished 3 rounds of R-chop (chemotherapy) and 17 days of radiotherapy just over a year ago. I have to go back to King's college hospital in 6 months for another MRI with a view to Gamma knife surgery for the meningioma (brain tumour). I see my haematologist/oncologist for cancer check ups every 4 months, but I know that if I have any problems I can see him sooner. So all in all I'm very lucky, God bless the NHS.

  • JoyKF53
    JoyKF53 lors23

    Posted

    Hi Laura. It sounds as though your dad isn't particularly helping and needs a doctor to explain your mum's condition to him. Having said that the doctor doesn't sound very helpful either. When I was having my cancer treatment a friend of mine said "cancer, the gift that keeps on giving" every time a new problem cropped up. All cancer victims live in fear of this disease returning, it can be very depressing. You say the doctors are not interested because it isn't anything medical. I disagree, it is medical - depression, anxiety, chemo brain, all medical conditions. Change doctors or demand a second opinion, your mum can be helped but you will need to be assertive and let it be known that you will not be fobbed off any longer. If you have Macmillan nurses in your part of the UK contact them, they can give you information and support. Let me know how you get on.

    • lors23
      lors23 JoyKF53

      Posted

      Hi Joy

      I did and have been phoning the oncology that.lool after my mum and managed to get a mcmillan nurse to come out tjis week to access her. I agree this has all to do with my mum having cancer so l thought they would have the right people who could help.my mum through this as mentally she is not strong enough to fight it on her own and its clearly took over her as a personèàe said other than that you will need to speak to her local gp and see if they can help in any way but all she said they will do is up her dose of valium which my dad won't do so its like fighting a losing battle.

      Tbh l though the aftercare from her cancer team would have been a lot better. But we will see how she gets on with the mcmillan nurse.

      Thanks

      Laura x

    • lynda20916
      lynda20916 lors23

      Posted

      Hi Laura,

      I'm glad that thanks to Joy's response, it looks like your Mother is going to get some much needed help. Please continue to post about how things are going.

      You have not said much about your Dad, except that he's not willing to help her with her medication. Do you know what's going on with him?  He is probably scared and angry as well.  

      Once again, best of luck and continue to let us know how things go! 

    • lors23
      lors23 lynda20916

      Posted

      Hi

      Well we had another bad day yestetday l got a call early in the morning from my dad saying can you come in asap your mums going off her head and asking for you. I am the youngest of 3 l have a brother and sister who stay much closer to her yet its me she wants. Maybe its because my husband an l have been there from the start and been to every appointment with them as l know my dad is old and really stressed to so we went to make sure we were picking up everything the doctors were saying. And by sheer luck l.have been ill myself this year l have had 2 hip replacements and a knee replacement all done this year and am waiting on another knee reolacement because l found out l has bad ostioarthritis so l have not had the easiest year myself but have been off work because of it so l have struggled to get better to be there every step of the way with them evrn though l am in constant pain myself. I have had to give up working full time because of it and right now l have just went back to work in the past few weeks for 2 days. I can't even get a day at work without a phonecall ti day she is bad can l go in. I snapped a few weeks back with my family as l feel my sister and brother could be doing more to help especially that l am not well myself. But again today l was called in as she was freaking out saying she was dying. I spent about 2 hrs on the phone to the doctors and mcmillan and they all told me ti uo her dose of lorazipaine so l think lmhave finally got though to my dad that he needs to give her these tablets not only to helo my mum. But to give him a rest to as he is up all night with her and is near having a breakdown. Whrn l eventually did get home l spent the day crying as l am exausted and stressed nyself then my big brother and sister call for an update. Its not affecting there life like it is mine l just need help from the hospital or mcmillan to tackle her anxiety and help her get through it as l cant do it on my own. I have lost my own life for the past year through 3 major operstions now l am dealing with mum. I do not know what else to do other than what l have done. I have called everyine frim gp's to her cancer hispital to mcmillan and l have got a mcmillan nurse coming to access her this week..i just pray this gets better fast as l am.making myself ill with worry and its causung me more pain as l am still healing from my own operations and an due another knee replacement that l have had to pospone due to my mum.

      Thanks fir everyones advice.

      Laura x

    • JoyKF53
      JoyKF53 lors23

      Posted

      Hi. To a certain extent I know exactly what you're going through though I had not had surgery. I too have a brother and sister who didn't just not help, they actually put obstacles in my way, they were a nightmare. Long, long story, suffice it to say that I can totally empathise with you. My dad had strokes so couldn't walk and had Alzheimer's, my mum had dementia - I was the youngest of 3 and it all fell to me to look after them. For the sake of your own health you must take a step back from this. You must tell your siblings that you have done your bit, your health is suffering and they must step up to the plate. Tell them that every time you get a frantic call you will ring them and it is up to them to go and sort things out. Stand firm and don't be bullied, your own health depends on it. Keep in touch.

    • lynda20916
      lynda20916 lors23

      Posted

      Hi, Laura,

      Sorry I haven't gotten back to you sooner.  Having some computer issues. It's terrible that your siblings are standing back and "letting" you handle this. I have had similar issues with a sibling.  It's heartbreaking and maddening.  

      Joy has given you some excellent advice.  I must also say that I know that my demented mother consistently resisted any effort that I made to urge her to put her affairs in order when she was capable of doing so.  That doesn't help with the heartbreak, but you are not responsible for the choices that your parents have made, or the consequences that occur.  All you can do is what you can do! That doesn't mean you have to sacrifice your own health or well being, or your famiy to make things better! I am sure that you have done the best you could!

      Please know that you are in my thoughts and prayers! xxx  

    • lynda20916
      lynda20916 JoyKF53

      Posted

      Hi, Joy, you are a remarkable person!  You have gone through and are going through so much, yet you reach out to others with love and understanding!  

      Thank you! xxx

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