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Final stages - Symptoms and deterioration

3 May 2017 19:45

My mum has entered a new phase and we have spoke to a few doctors who just keep telling us these symptoms are normal at this stage of disease. Lung cancer stage 4 - last october told spread to lymph nodes. No treatment available.

My mum wont ask how long they predict she has left but im slowly seeing her deteriorate fast of the last few weeks and it scares me as i dont know if this is the end or not. They are willing to do another scan to see what the problem is regarding eating - doctors not said but family are suggesting it may have spread to the stomach - does lung cancer spread to stomach. 

These are symptoms that have happened over last few months but decline is seen in last 2 weeks mainly.

She cant go out and is house bound now, can do little jobs but very breathless, struggles getting down stairs and has to stop half way down.

Constant breathless unless resting in chair

Constant coughing

Medicine and food coming out nose.

Nose bleeding on and off

Chest pains in ribs and sickness - vomited blood (mouthful) on one occasion last week.

Dehydrated - was given iv drip

Not drinking much, sipping water / tea

Not eating much - will eat what can but it wont go down - small mouthfuls of a dinner once or twice a day. 

Breathlessness last week to point couldnt talk - said feels like shes drowing when we got her to hospital.

Weight has come off, fingers look like starting to swell,

No acistes just very skinny - she has lost so much weight over past 6 months.

Stomach pains - constantly holding stomach but prescribed morphine but refuses to take it as she believes thats only for end of life 

As her primary carer we have not got any help from macmillan and she refuses anyone to help, im starting to feel i need help as shes just getting worse. How long does this process last for and how bad does it get. I dont want her to suffer but i dont know what to do as i cant be there 24/7.

 

Final stages - Symptoms and deterioration

3 May 2017 20:49 in response to Martin235

Martin

 

Contact your doctor or MacMillan direct. They are busy people and make sure you keep onto them. My wife took ill extremely quickly and my doctor and MacMillan were brilliant. Don't struggle on your own. Maybe contact a moderator on this forum and ask if they can direct you to somebody. It is extremely hard watching somebody suffer and the feeling of tiredness and helplessness. Not to mention needing time out for you too. Please reach out to MacMillan today.

Andy

Final stages - Symptoms and deterioration

3 May 2017 21:31 in response to Martin235

I m very scare about your mum condition...my sis also at last stage of lung cancer...n drs also denay to continue any treatment...we are also in trouble condition...tension is increase day by day...she diagnosed last stage before 1 month...i read ur mum condition...now  i m scaring ...my sis will have to face this sitaution also...:-(

Her cancer is also spread to lymph node...but we are taking help by God..quran versis...due to this..my sis condition is better now...

Final stages - Symptoms and deterioration

4 May 2017 23:29 in response to Martin235
Hi Martin, My dad too was ill very quickly with stage 4 lung cancer after diagnosis, only 8 weeks between us being aware of the cancer and his passing. These were 8 long weeks of deteriorating symptoms, many of which you have shared that are common at the end-of-life stage. I can't say that it does or does not spread to the stomach but sadly it is very normal to find eating a struggle as the disease progresses. If your mum has lung tumours pressing on her oesophagus this will also cause more eating discomfort. We struggled to get on top of my dads pain in the end as they can only manage/increase morphine administration slowly being a controlled drug. Your mum is not alone in her views of taking morphine as a cancer patient, but you must tell her that morphine is used for people for general pain management in many situations in life. From my experience with my dad I urge you to get on top of her pain as soon as possible as this can take a while and can be a struggle. You don't want to see your loved one suffering and then passing in pain. We had to and it completely haunts my soul. I would hope that she will realise that you need support, but do call Macmillan for advice as soon as you can. It may be that they can visit your mum and put her at ease of their support. In the least they can support you initially whilst you bring her around. I will share with you what the Hospice nurses shared with us during their time supporting our family. They suggested that they predict timeframes from the visible deterioration they see over a certain timeframe - so if there is a marked deterioration over months, then they suggest a 'months' timeframe, and if marked deterioration over weeks, then a timeframe of weeks. However this is a very loose prediction and it can be sudden for some people. My dad was the opposite and held on for over a week at the end against the odds after being suggested days. I urge you to spend as much time as you can with your mum whilst she is 'with it', treat every day as if it could be your last with her and tell her how much she means to you. My dad, as seems to be normal with lung cancer patients, slept for longer and longer each day and withdrew from us over the weeks as he moved toward his passing. Make the most of the time you have now to have conversations you can cherish. Please let me know if you want any more information on my experience with terminal lung cancer, but take into consideration that everyone varies in their journey. I wish you so much strength through this difficult time. Debbie

Final stages - Symptoms and deterioration

8 May 2017 19:36 in response to Needingstrength

In last stage of your dad...is he getting any treatment..like chemo or radio

Final stages - Symptoms and deterioration

27 Nov 2018 17:40 in response to Needingstrength

What are the major things to look for? My dad does amazing then seems shocking and it yo-yos he has stage 4 lung which has spread to lymph glands liver kidneys and around the lung, I’m struggling to deal with it when he’s good because you prepare yourself for the worst. They are giving him palettive chemo every three weeks he had last one on Thursday started with sickness yesterday like last time but has just experienced a nose bleed, his breathing also worse and he hasn’t eaten anything today. I’ve managed to get him upstairs and he got upset which is NOT alike him... think he’s emotionally drained as well, but if there’s anything to look for in last stages it could help me to be prepared ... 

thank you x 

Final stages - Symptoms and deterioration

5 Mar 2019 19:32 in response to Needingstrength

Hi Debbie

My dad was diagnosed with lung cancer which had spread to the brain and liver on Christmas Eve an a month ago we was told he has 3-6 months. He's still takinf steroids to control the brain met but he's starting to not feel like eating, he can't go out, his legs and feet have swelled and he has a lot of difficulty breathing. I'm only 22 and have no siblings, I feel guilty and upset all the time. I'm not sure what else to expect or have any idea how to help him.

Any advice would be great

 

Final stages - Symptoms and deterioration

5 Mar 2019 20:24 in response to Emmalou12

I live in Upholland Skelmersdale Lancashire, I have a little girl but if you are any where near I will come and help you, please get all support you can!!! Ring district nurse, get the nurse from the hospice the cancer nurse hey are fantastic, even if it’s just for a chat, things are going to get hard so get organised get these people involved to lean on. Do not be alone please xxxx

Final stages - Symptoms and deterioration

12 Mar 2019 17:08 in response to Emmalou12

Hi, I am in the same situation as you Sad only child no father around and the gp has told her she has entered the next stage of the cancer. She has gone down very fast and it's so scary. We need to be there for them and make sure we express ourselves and talk to others that want to listen. Please message me if you ever need to just talk.

Take care Yasmine x

Final stages - Symptoms and deterioration

6 Apr 2019 13:24 in response to Yasminetc

Hey Yasmin this is my first time posting on this forum but I saw your post and can totally relate. I'm also an only child, with no dad. And I found out yesterday out of the blue that my mum has stage 4 breast cancer that has spread. 

I haven't been able to find anyone in a similar situation but thought I'd reach out in case you wanted to chat. I'm at a total loss about what to do or think xx

Final stages - Symptoms and deterioration

6 Apr 2019 21:23 in response to mp4691

Hi my mum has also been told she has stage four breast cancer and it had come at such a shock xx

Final stages - Symptoms and deterioration

7 Apr 2019 05:40 in response to Martin235

Hello Martin 235, I'm sorry that you have to witness your mom suffer at the mercy of this horrifc illness. Your mom may very well be in the dying stages (last months/ weeks). She is delaying her suffering by not taking the morphine. Contrary to popular belief, morphine is NOT only used in end of life. It actually helps with breathing and reduces pain. At this point, she should not be taking any stairs. You need to put a bed downstairs for her (even if it's a mobile fold-out bed). We had to do this for dad before he passed away of lung cancer only 17 weeks after diagnosis. Please have your mom's doctor reiterate and emphasize the importance of pain management (medications). The sooner you enroll your mother in hospice (even at home), the better everyone will feel especially her as they can provide pain management, and assistance to the family as a whole which will help take the load off of you. Hospice will also provide you with any and all medical supplies you will need to keep mom comfortable at home. I KNOW that being her full-time caretaker isn't easy but at the end, it will be worth it. God bless you and your family. 

Final stages - Symptoms and deterioration

9 Apr 2019 07:18 in response to Martin235

Hi Martin, 

I am really sorry to hear about your mum. I do pray and hope that she will be easy on herself and time like now I believe is very hard for you. 

I am in the same situation. My mum had breast cancer when she was 30. After 20 years she has been told thag she has liver cancer spread in bones. Which was 5 years ago. She had endless 5 years of chemo and tace proceedures. My parents live in Dublin (Ireland) and Me and my beother live in UK. So all those 5 years traveling both of us backwards and forwards to fight with mums illness. 

And last year Christmas time mum got worse , no treatment available. As liver failing. Her skin is yellow, swelling abdominal and just very weak. In hospital in January they put the drain in to drain bilirubin out, at that time I have been told that my mum has weeks to live... it’s April now and she is still with us. I have moved from UK to parents leaving my two babies (7 years and 5 years old) in Uk with their dad. They kept visiting us twice a month. My dad stayed at work and I looked after my mum. My mum always been a fighter , positive minded, always looked for alternatives like herbal. 

As mum was stable for those last few months I have decided to go back home leaving mum in dads hands and hospice nurses and community nurses (which all are very helpfull) 2 weeks me being back in UK dad rang and told me that his mum died, so he had to go back home to funeral and I had to go to mum to look after her while dad comes back. And when I went there I was shocked how much 2 weeks changed her. He abdominal swolen again, yellow skin and eyes, I could tell the her orientation changed and memory loss too. She was much more sleepy than usual. I took her to nurses, gp and hospital at the end of the day and basically how I felt was “what the hell are you doing here and what do you expect from us” I felt very alone will ill mum! They did examine her, done bloods, everything worse. Liver enlarged very much and basically they said they can’t do anything as she is a palliative patient and no treatments or further visits needed. So now I understand how serious and also “written off” my mum is . It is devastating and since then my mum is gradually every day is going down. Hospice and nurses are quite supportive. I don’t know if mum will ever go to hospice as she seems sleeping now most of the time... not sure how long time we have left and when is the time to alert all the other family. It’s hard not to know, hard to see her in this condition and it is just devastating to experiance that to anyone. 

Please stay strong all of you ! ❤️

Final stages - Symptoms and deterioration

18 Jul 2019 00:30 in response to rebvelaz83

Hi Martin235 I have only just joined this group and I saw your post. Obviously I do not know what the situation is regarding your mum. I was diagnosed with terminal cancer back in 2013, no mistake about the year I previously had operation to remove my left lung and told st one point I was in remission. I was feeling something isn’t right so in the September I asked them to rescan me then rather than December. The results where terminal with a 6/8 with palliative Chemo. Or 3/6 without. I had 2 sessions of palliative Chemo and pulled out. It left me in such a mess. Physically and mentally. I actually was wishing death would come. At one point I became unconscious. I definitely do believe your hearing is the last to do. I overheard my GP and Macmillan tell my husband to prepare himself and 2 of my children who where still living at home at the time. They said they would give me until the weekend at the most. Tomorrow end of life team will be coming in. I was furious. I had seen end of life team help finish my brother of in May of the same year. Although there’s a limit to how much morphine they can actually give you. Believe you me when I say this. In every country in the UK theirs someone who end of life team need to get permission from to up the national guidelines of what they can give. It’s only one person who is authorised. They are normally based at a hospice. One local to me is Loros. The man was contacted their they had given my brother the highest dose, enough to kill a rhinoceros off apparently. However with my brother being such a big chap, I don’t mean fat I mean big in talk big muscles etc. They amount they gave him was authorised by this chap at loros who doubled the amount that any doctor or oncologist could do. I personally thought it was wrong he had stated time after time he did not want to be knocked out or sedated in anyway. Yet they went against his wishes by saying it was better for him. He would have hated the thought of living a extra 6 days without him being able to use the toilet and everything. He would not only have been mortified. He would have actually gone ballistic that his wife let it happen. I has his older sister told them it was not what he wanted, I had no rights it was with his wife. So having seen all that with my brother I just kept telling myself I had to wake up they are not doing that to me putting syringe drivers into me to knock me out further than I already was. I do not to this day know what happened I did actually wake up. Yes and here I still am 6 years later. Still alive, going from one extreme to another  no one actually knows why. I have one of the worlds leading cancer researcher as my oncologist. He asked me if I would give extra bloods for cancer research etc to help them try to understand why I am still here. It’s literally knocked the researcher off their feet because I genuinely should not be alive. I should never have woken from that stage of being unconscious. So I have totally baffled the cancer world. People say good for me etc. Now I have told you all of this for a good reason first you definitely need help with district nurses and Macmillan. I know how difficult it is for family. I know because my 19 yrs old daughter couldn’t cope and took a overdose which she was extremely lucky to have lived. It was touch and go for 6 days. So I do understand. If and only if your mum expresses her wishes to fight then let her, don’t let them put syringe drivers in her. However should she express her wishes and says I have had enough and she wants it over. Then please please allow that also. I don’t know if it’s too late or not. So although this message was meant for you I am saying to anyone who reads this post I have done to Marin whatever your parents brother sister wife want please please no matter how you feel about it please try to give them their wishes. I am classed as a miracle in the cancer world. Looking back knowing what I know now. Theirs this bigger part of me wished it was over. I genuinely do mean that. If I could go back in time knowing my life was going to be this bad, in fact it’s not a life it’s a existence I would have never ever have gone on to have further treatment after I woke up. I would have let nature take its course when I could have. The cancer is spreading yet something is keeping me alive. I have refused any further treatment, sometimes we all have to let our family go. So let them have peace if it’s their wish. Do not let them regret it like I do, a mirical has turned out to be a major punishment. I know a lot of people would think I was ungrateful. Maybe they think I am I would say you come and live my life then and only then would you understand. Good luck Martin please if I am too late for you mum my sincerest best wishes. She will be at peace, if your mum is still with us then all I can say no matter how much I feel it for you as family, I feel more for your mum to get whatever she wishes for, so good luck to all whatever the outcome. Marj 

Final stages - Symptoms and deterioration

17 Sep 2019 01:30 in response to marj58

Hello,

thank you you for sharing your experience and so happy for you that your doing well. 

My uncle is going through the same as what your brother did. They keep pumping morphine into him and I keep saying to them there must be something you can do to help him pls don’t let him die but they just keep saying sorry but he is dying (as in he has just days left). What can I do to stop them? Can we stop them. They keep telling my aunt not to wake him up if he falls asleep and to just let the meds take their course. Please someone help me.