My 81 year old wife was found to have advanced lung cancer some of which travelled to her brain.
We were offered Chemo for lung cancer we decided against it.
Then her left hand stopped working and she developed drop foot, we were told by oncologist that this was due cancer pressing against nerves and only way to stop future paralysis was to radiotherapy.
Considering the odds we went for radiotherapy and after 5 sessions of low doses of radiotherapy she lost some hair but her hand movement got little better nothing near normal.
Today she has slept for 12 hours and is still sleeping, I am told by the nurse and carers that this is due to radiotherapy and should recover soon.
It is very stressful for me and if it was not for District Nurse coming twice and carers coming 3 times a day, I cannot imagine how to deal with this situation.
I and other people around her are doing everything possible to make her comfortable and have left the rest in hands of all mighty.
Please advise.
Written by
bhartek
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Hi. Sorry to read about your wife's situation. My wife had very similar symptoms and radiation treatment earlier this year. The symptoms of fatigue and sleep, with compromise to balance, spatial awareness (bumping into things) and even some speech difficulty continued for nearly two months before gradual improvement. Swelling in the brain caused by the radiation is usually managed by steroids which I assume your wife will be taking and it's important she does so. More swelling could cause more paralysis which the steroids will prevent. Also, make sure she drinks lots of water. I wish you all the best in managing the situation. Regards.
Sorry to hear about your wife's condition. Fatigue is a common and known symptom in the aftermath of brain radiotherapy but the timelines for recovery will no doubt be different for different people and I assume that age will be a factor as will the broader treatment plan, including for the primary source of the cancer. But I suggest consulting a doctor or oncologist about this. I wish you both the best in what I'm sure is an extremely stressful situation.
Hi...so sorry to hear about your wife....my 46 yr old wife who i lost last year had lung cancer that had spread to the brain...but radio and steroids did control the mets to the brain and were told that this treatment does work to stop the pressure and it did and after the initial symptoms we never had any more.....you are in my thoughts at this awful time xx
After reading your reply I then read your heartbreaking posts about your wife and am in tears. So young and so tragic, your experience whilst so devastating has, I'm sure, helped many people on here who find themselves living the same nightmare.
Mine is not my partner, but someone equally as special to me..,my mum.
What I got from your posts, apart from the desperate feelings of grief, was your feelings about treatment which I am so concerned about. Hindsight is something we all wish we had, my fear is that SCLC is known to be so aggressive but so is the treatment and so it leaves you wondering which is the lesser of the 2 evils. My mum isn't allowed radiotherapy so chemo we were told was her only option and when she was informed that without treatment she has only a matter of weeks, she opted to try it. I just hope with all my heart that she doesn't suffer worse with the treatment and end up living her last weeks more poorly from the chemo than she would've from the cancer.
Feeling so lost, lonely and afraid as Friday looms closer.
I hope that you have found strength and courage after losing your wife and the ability to look back on the fonder memories of the times you shared together.
Hi Jacqui.....thank you so much for your post....i so want to be positive but this horrific disease laughs at you as it kicks you....still very angry 17 months on with the disease and our treatment...but i fully realise that this was my journey and that there are far more positive outcomes for many....i was always positive around my wife even though deep down i knew what was happening....you are both in my thoughts....please let us know how fri goes....i know you feel it but you are not alone. John x
Hi John and thank you for your reply, much appreciated as I know your feelings are still so raw about your wife...they say time is a great healer but I don't think, in my experience anyway, that you ever truly come to terms with such cruel tragedies. Yes, they happen to all of us, I've certainly had my fair share, but I don't feel I have ever got over them....just learned to put one foot in front of the other and continue with life minus a piece of your heart.
Like you, I stay positive around my mum, God it's really hard sometimes but I know that's what she needs. But deep down, with the results she's had so far, yes I'm scared stiff, I wish I could believe the outlook was more positive but as you rightly say, it is a horrific disease and unfortunately not one that responds well to treatment.
I thank you from the bottom of my heart for your message and I will let you know how Friday and the days that follow that go.
You can see from the previous posts that there is a good deal of emotional support available from the Roy Castle community. As Ribeye 79,and jonnyd01 state tiredness and pressure symptoms are common symptoms with any radiotherapy treatment. Usually the tiredness goes on for a few weeks after the treatment has finished. It gradually improves.
It is good that you have the services of the district nurses and the carers supporting you and your wife at home. The district nurses are specialist practitioners who will assess your wife’s on going needs and coordinate any care needed now and in the future.
As this is a very stressful time for you I would suggest that you to write down any concerns you have about managing your wife’s care at home and speak to the District nurse when she next visits. She will advise you about things like attending to her personal care “out of hours” She will also I am sure discuss with you any financial benefits(DS1500,attendance allowance under the “special rules” at the highest rate) you and your wife might be entitled to assist with the increasing costs of caring. She will also discuss with you how to manage any other treatment related symptoms that may arise in the future.
We have a dedicated Nurse Led Helpline Freephone:0800 358 7200.Please don’t hesitate to call us for advice or if you just need someone to talk to.
I am happy that I have found such a supportive forum for people like us.
I will do all that has been suggested by you and other members and add time to time about condition of my wife.
Kind regards
Sidd
Hi
I'm so sorry to hear about your wife and understand how distressing it is watching a loved one suffer from this dreadful illness.
I'm very new to this, my mum was diagnosed two weeks ago with SCLC and following her brain and bone scan sadly the cells have spread. She starts chemo this Friday but unfortunately is not a suitable candidate for radiotherapy on her brain and this has really caused me great concern. I'm trying to learn as much as I can about the effect of the cells spreading to the brain, so your post and the replies have been informative.
I'm sorry I have no advice for you....I'm struggling to come to terms with all of this which was a shock diagnosis, totally out of the blue from a routine x-Ray, yet so devastatingly advanced in someone who appeared so fit and healthy.
I don't even know what to expect from the chemo...I know that radiotherapy is recommended for the brain so am so worried of the outcome of not being able to have this...therefore, is it really worth going through the aggressive chemo?
It is a very difficult time so I really do feel for you...I cried all day yesterday, but then I can do that when I leave my mum. For you it must be hard trying to stay strong living with this 24/7. I see my mum every day but fall apart when I get home. I'm so afraid of the coming weeks.
I an unable to comment about chemo as we did not opt for it.
My wife has experienced no pain while getting her treatment but she does have pain in her bones and she sleeps a lot which I am told are normal side effects and will go with time.
In my wife's case cancer was found by chance and it had already reached stage 4, she is 81 so maybe she will find symptoms more severe.
One thing I can suggest that you speak with oncologist about care in the community for your mum and District Nurse to visit her daily and you will find this very helpful.
I pray for your mum and all suffering with this illness and wish everyone recovers.
Thank you for taking the time to reply to me and for your advice regarding professional help in the weeks to come.
My mum was 77 last month but doesn't seem it, and, like your wife, no signs or symptoms yet straight to stage 4 so out of the blue. We were told it had spread to the lymph nodes and then the brain and bone scans confirmed it had spread there also.
It's just so devasting how in a matter of 2 weeks your lives can change so much. My mums only option was to try the chemo as she was told she had only a matter of weeks without treatment, but my concern is what effect this will have on her quality of life. She was told she couldn't have radiotherapy on her brain as she underwent a course of this last year after having her eye removed as a result of cancer. We were told that the Small Cell Lung Cancer has nothing to do with her eye, she has just been extremely unlucky to get another primary cancer.
I've just taken her to Boots for a thermometer and all the other bits that oncology recommended and now I'm home again in floods of tears because it makes it all so real. Feeling so desperately heartbroken and praying that her decision to opt for chemo is the right one.
Thoughts and prayers to you and those who are going through this or have gone through this nightmare.
I am very sorry to hear of your mums diagnosis, coming to terms with this can be very difficult especially as she has been well up to now. Of course you will be worried about the chemotherapy and any side effects from this, speak with your Oncologist or CNS discuss any worries or fears that you may have with them, it sometimes helps to write any questions down before you go. As bhartek has suggested ask about palliative care team, they will provide emotional support for both of you and can give advise on any side effect that she may experience.
if you would like to speak with someone we have a free nurse led helpline on 0800 358 7200
The last couple of days have been difficult with round one of chemo yesterday (Friday).
My mum coped very well, I am doing my utmost to keep her positive, however, today she has had a very anxious day, feeling irritable and agitated. I am presuming this is a perfectly normal reaction, especially as she had not shown any acceptance of her diagnosis until yesterday when treatment began. Now everything is going through her mind and she has been very low today.
On Monday I will call her GP and maybe see if she can arrange a home visit for my mum so that I can discuss help for me at home and what is available.
I know this is only the beginning and that there will be difficult times ahead. I pray every day to give my mum the strength and courage to get her through this trying time.
My thanks for your advice, there feels so much to take in right now.
Hi just reading your post my boyfriend was diagnosed 5 weeks ago with sclc it came out of the blue and was a total shock heartbreaking Onngologist said it was also in lymph nodes hes had 1 chem shesh and 5 to go he was so fit b4 all this but since diagnosed he has gone down hill rapid , lost a lot of weight which he wasn't overweight to start with he is so thin now he strugels to walk he is also getting confused and carnt concentrate I carnt belive how this horrible ilness has took a hold so quick and I just wondor if heel ever have any quality of life after treatment I'm feerfull of the unknown and caring for him 24/7 is heart breaking watching him suffer he his 64 was always fit and well hope your mum can get threw this take care xx
Bless you, I know how heartbreaking it is 😥 I'm just popping to my mums to give her night time injection but will msg you back, promise. You're not alone.
Hi again, sorry it's late, I've been staying with my mum as she has been so anxious since the first chemo session last week, she's just gone off to sleep.
I really feel for you and can identify with your fears regarding your boyfriends quality of life with the harsh treatment, because it is harsh. Like you, we were so shocked as my mum had displayed no symptoms of this dreadful disease, she had merely gone for a routine X-ray. It really does knock the wind out of your sails, for both of you. I've followed all the advice given, to stay strong and positive when I'm with my mum which, at the moment, is most of the time. But I do cry when I'm on my own because it is heartbreaking and you do feel so helpless. We can give support and care but we can't make it better and that makes it difficult for us as Carers as no one wants to watch their loved ones go through this.
Do you mind me asking whether your boyfriend had the have the brain scan and bone scan before his chemo started and, if so, what his results were? My mum had these but unfortunately isn't allowed the radiotherapy on her brain which is normally given as she had a course of it last year when cancer was detected in her eye.
My mums CT scan showed that it had spread to the lymph nodes in the centre of her chest. Her chemo is also 6 sessions, her second is this Friday.
She's not suffered with confusion but has suffered severe anxiety, panic attacks and very irritable, her GP said all this is natural, it's all fear of the Unknown. Today she has felt sick and very tired, but we were told that the chemo kicks in around day 4 so again I presume this is normal.
Your boyfriend will obviously be feeling as afraid as my mum, who wouldn't with the shock of it all. That could affect his concentration but if you're worried about the confusion I would call his GP or oncology nurse, that's what they're there for. It's far better than worrying and not knowing.
Please keep in touch, we seem to have started this dreadful journey at the same time and I don't know what to expect in the coming weeks just as you don't, it's a daunting time for all.
My thoughts and prayers are with you both at this difficult time 🙏🏻
Thanks very much for your reply no he didn't have brain or bone scan he just started on chemo is second one is next friday but c the ongol on Wednesday I dread the theese appointments I think its his severe anxitey and iratabilty thats confusing him he woke me early this morn getting himself all upset and he carnt explain y it happens iv rang docs this morn to c if I can get him some medication to keep him calm its another gurdel to get over I pray to god I can just keep him comftable thank you for your msg and hope your mum can be positive and kept comfy god bless to you and your mum xx il keep in touch if thats ok
Bless him, my mum is exactly the same, suffering severe anxiety and really irritable. I sleep over and she's waking every hour through the night. Their minds must be tortured with fear. The GP gave my mum some beta blocker tablets to calm her down, they've really helped with the anxiety and palpitations.
It would be lovely to keep in touch as we are all embarking on this journey of the Unknown and it often feels very lonely.
Thank you bhartek for your kind message and valuable advice.
My mum had her first round of chemo yesterday (Friday) and I was extremely proud of the strength and courage she displayed.
Today, however, she was totally different...anxious, agitated, irritable, very low. She told me that she didn't feel well but when I asked in what way it wasn't feeling unwell from the treatment itself but rather her mind working overtime. I sat and spoke calmly with her and told her that I'm sure how she is feeling is perfectly natural.
The problem is, my mum did not want to discuss anything to do with her recent diagnosis, it's like she has spent the last 4 weeks in total denial. However, as treatment began yesterday she has spoken openly about it for the first time, and I suppose all her fears and anxieties are now surfacing.
I'm considering contacting her GP on Monday to arrange a home visit to maybe have a chat with her. I didn't realise how much treatment had to be carried on at home. I have injections to give my mum daily from Tuesday next week, there are so many tablets to take and obviously keeping an eye on her temperature. My mum has asked me to do the injections but I am worried in case I get it wrong...is this something the district nurse could do?
This is all so new and so much to take in. I want to take the best possible care of my mum but feel it's a lot to do on my own. I know my mum doesn't like too much fuss so will not ask for her GP or district nurse so maybe this is something I'm going to have to speak to the GP about.
Thank you for your wonderful advice and apologies for the delay in replying, it's been a difficult couple of days.
Since my last message to you, my mums GP has been out to see her and today the district nurse is visiting to do her blood tests, she really isn't up to travelling to our surgery or the hospital for them done. I spoke with her about the advice you'd given to me and told her that she doesn't have to make appointments to visit her GP, that they will be understanding and more than happy to visit her at home. She felt she was bothering them because she's never called them out before, but I gently explained that she's never needed to but now she needs to accept their help.
I've been sleeping over since the start of her nightly injections this week which I have to do half an hour before she goes to bed. So far so good. She was suffering severe anxiety attacks but having someone there with her has really helped with this and her GP prescribed some beta blocker medication to help.
All in all she's doing really well considering it's still early days and she's still reeling a bit from the shock of it all.
Staying strong for her, cooking her meals which she finds better as she has no appetite but is eating well because she isn't having to prepare it.
She's just starting to feel a little sick now and also tired but her GP said all of these things are normal from about day 4 after the start of her chemo. She has her second cycle of chemo tomorrow so praying she continues to cope as well as she has so far.
My thanks again for all your advice.
I do hope that your wife is coping as well as can be expected.
Well don with GP and District nurse, now get in touch with pallative Care (when your GP comes or District Nurse comes ask them to contact pallative Care team)
Now, if you mum cannot get out of bed please ask same GP or District Nurse for carers, the carers can come to clean, wash and change pads etc (very helpful for you).
My wife has been sleeping most of the time and eating a little.
I am very sorry to hear that your wife does not seem to have responded to her radiotherapy, tiredness and sleeping is a common effect of radiotherapy to the brain and can last for a few weeks afterwards, normally gradually improving as the weeks go by. A rarer complication can be Somnolence syndrome this can take you by surprise as it can start 4 - 6 weeks after treatment has finished, it causes extreme tiredness, causing you to sleep all the time, this should also improve over time. I have added a link below from cancer research which explains the effects of radiotherapy on the brain.
I know from your previous posts that you have good support from district nurses, they will know your wife well, discuss any concerns that you have they will be able advise you on the symptoms that she is experiencing and give you support.
if you would like to speak with someone we have a free nurse led helpline on 0800 358 7200
Can you please give me an idea how long sleeping continues as it has been 3 months and she has been sleeping too much, she does open her eyes and sometime makes effort to talk but no words or slurred.
Oh Sidd I have just seen your message and my heart really does go out to you.
You were kind enough to give me such good advice and support when I first learned of my mums diagnosis and sounded so positive.
I'm really very sorry to hear that your wife is still sleeping so much, it must be so painful for you and I know that feeling of helplessness only too well.
My mum is still in bed today, she had round 4 of her chemo yesterday and is so tired. Up until round 3 she has coped really well but this cycle yesterday seems to have knocked her for six.
Both you and your wife are in my thoughts and prayers at this very difficult time.
God bless you, your wife and everyone else here going through this very emotional and difficult journey.
Such a painful time for you when you see no progress. The Somnolence syndrome that was mentioned in our earlier blog 3 months ago, can last up to 3 months.
However it may be you would like your wife re assessed by the GP/ Specialist. If you still have district nurses come in perhaps discuss with them.
Take care of yourself also and please speak to your GP if you are really struggling with things, as it is important that you have the support you need.
Please call us if you wish to discuss anything on our free nurse led helpline on
Thankyou again for your concern really appreciated
I am not worried bout myself and as far as GP is concerned they have left her to die though they come and visit her.
As far as Oncologist is concerned she has washed her hands off everything and by now she would have forgotten my wife. I have had worst Oncologist and do not wish her on anyone else.
I was told that by District Nurse a very helpful person told me that my wife is in he last days because she did not respond.
With help of Alternative Medication yesterday not only she opened her eyes but also spoke few mumbled words.
Today she refused food because it was not of her taste but she enjoyed mashed bananas, eggs & protein and double cream, she at it all. She also drank 1/2 litre of water and small glass of Orange Juice.
As far as EXPERTS are concerned she will dies soon I DISAGREE.
"Till the last breath person has he or she have full chances of survival and getting better and we Carers and loved ones should never give up.
I am so sorry for the loss of your wife. I lost my mum just two months ago to the same awful illness. Take comfort in the fact that your lovely wife is no longer in pain and remember she will remain by your side always.
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