But some patients reported missing face-to-face contact, study found
by fritztheraven on Sun Jun 28, 2015 12:58 PM
I joined this site a few weeks ago, but I have been hesitant to write anything, or join in any discussions. I guess I am writing here to try and talk about our journey so far. Having read quite a bit on this site, it has helped me notice things, and has made me more knowledgable on what to expect. It's odd, the search for answers and knowledge helps to ease my fears.
Okay, I will start at the beginning. My mum had been coughing for weeks, non stop. We kept on asking her to visit the doctor, but she was scared of what the doctor might find. My Mum survived her first bout of lung cancer 10 years prior. My parents went on holiday, would have been near the end of November 2014. This was around the time we were asking my mum to see a doctor. When they returned from their holiday, mum couldnt walk. She was breathless, tired, really not well at all. This prompted her to visit the doctor, who then through time and another few visits, concluded that it was once again Lung Cancer.
I can only praise the NHS (at this point...), for how quickly they reacted to organising Chemo treatment, and so on. She went for her first treatment, and she was fine after it. At this point, she was still very mobile, able to go shopping (not for long though), go out to dinner etc... Her second chemo treatment went by, and she seemed okay after it, though she began to look weaker. The 3rd treatment knocked her for six. She became very ill. We had a stairlift added, to help her, but even going up the stairlift left her breathless. She got so bad that she had to be taken to hospital for a blood transfusion.
It was roughly this time when my brother and I went on holiday to America for 5 days (the end of March 2015). At this time, my brother and I were not told the it was terminal. I understand why they kept it a secret. We had been planning this holiday for a while, and my parents wanted us to go on holiday, and not cancel it (which we would have done, had we had known). Well, we came back from holiday, and my mum looked really ill. The thing about my mum is that she can be very stubborn, and she would not tell us if she was feeling unwell, even though it was very noticable. That night she was rushed to hospital again for another transfusion. This was the first time I heard my mum shout my name and ask "can you get someone to help?". At the hospital they had to check her blood oxygen levels, which involved taking blood from her wrist area, near her pulse. Again, she groaned in pain. Apparently getting your blood taken from this area can be very painful. We eventually left the hospital, and my mum had to stay in for a couple of days. It was this night that my brother and I were told that it was terminal, and the doctor had given her 9 months left with chemo, and she would have only had 3 months without chemo. I remember trying to keep the tears from streaming down my face for the next couple of days. It was hard, and it made me ill, until i finally let my body grieve. This was an important lesson that i learned. Your body needs to be able to release, and not keep things bottled up. If you become sick, then you will be unable to help help out when you are needed. Take care of yourself, so you can take care of others.
My mum had to get her next 2 chemo appointments resheduled because she was not well enough to go to them. After the first 2 sessions (i think it was 2 anyway), we were given the results so far, and they were good. The chemo was helping. After her next 2 sessions, again, she became ill, had to go to hospital. Her mobility had decreased dramatically by this point. She also became more "short tempered" towards my dad, and there have been daily arguements up to this day. Be it because of the drugs, cancer, or frustration.
After all her chemo sessions had finished , she was due to go in to get her final results. The night before, she fell ill again. And again, she tried to hide it. It got so bad that dad wanted to phone the hospital. Mum did not want to go to hospital. She never wanted to go back to hospital. She would fight hell and high water not to go back. She didnt end up going to hospital that night, instead she "slept it off". She looked slightly better in the morning, but I would always say if you are ill, get help. Dont sleep it off... We got to the hospital, and the results werent good. After the success of the first results, we were all living in hope. As i said at the beginning, knowledge and information helped ease the pain. Back then I was searching for "terminal success rates", and reading other stories that lead to an optimistic outcome. With this news, the research stopped being so optimistic, and became more about searching for "signs, symptoms, what to expect". Most of all, looking for one sign that would tell me just how much time was left after this symptom happened. "Nobody has a magical crystal ball that can tell the future", my mum would say. She still does say that. She stayed in hospital for the next 10 days, and was told that all curative medicines would not have any effect, so they would now move over to palliative care. This is one of my main problems with how the NHS treated this situation. They told my mum she had "days, maybe weeks left. Not months". She had a hospital room all to herself, but this was being told to her when the door was wide open! And the tone it was told in was very blunt, almost harsh. And it was being told as me and my dad were walking in to visit her! I would like to point out that this happened on May 14th 2015. It is now June 28th, a little bit over a month since the news. I previously spoke about how my mum could be stubborn, in this case I believe she is trying to prove them wrong. I like to think she already has.
After her hospital stay, she was transferred to the Strathcarron Hospice, near Denny (Scotland). She spent 2 weeks there, and then she was released home. During her stay at the hospice, she began to look better, brighter, more positive. She said she felt more welcome there. She would sit and chat to the other patients in her ward, and being that they all had roughly the same diagnosis or outcome (being terminal), they all had that in common. That is another lesson. She was finally talking with other patients going through what she was going through. There was a connection, a relationship, an understanding. I believe this helped my mum. It also relates to our journey, as a family. We would seek information and comfort from people that have been through/are going through similar things. It helps, there is an understanding, a connection, a relationship....one that you cant really get from anybody that has not been through what we have all been through/are going through. Its forums/sites like this that help.
During my mums stay at Strathcarron, see succeeded through one of her goals, to reach her 70th birthday. For her birthday, the hospice provided food/drink/space etc... We were not expecting all that... Again, the hospice was a god send. The care, the attention to detail. My mum was not just a number there, and we were not just faceless visitors visiting everyday.
My mum was released back home on June 2nd. She is on roughly 23 tablets a day. Her mobility right now...is non existent. Last night, as we were helping her up to her bed, she had a nasty fall. Her feet are very swollen, she says they feel like "cement'. She usually uses a zimmer to get around. Her coordination is off, puting a bottlecap on a diet coke bottle is even a task. Sometimes she will say things that dont make much sense. which leads my dad to ask "what", then she shouts and it errupts in to another arguement. The arguements have been more frequent now, dad says its pretty much a 24/7 thing now. Well, back to her fall.... She is too heavy for me and my dad to lift, and she has pain on her right side. My dad phoned the hospice 24 hour call centre, they said call NHS 24. This is another gripe I have with the NHS. It took 2 hours for phone calls for them to finally turn around and say "there is nobody in our jurisdiction, if she cant bear her own weight they cant send a fall squad/team, but there is a doctor on the way to evaluate her". My mum was laying on the floor for 2 whole hours, all we needed was help to lift her on to her bed! We got in contact with some family friends, and they arrived (about 1.30am! this was all happening). We were finally able to lift her on to the bed. the doctor arrived around 2.30am. The doctor seemed nice, and she is opening up an investigation as to why this happened, why the NHS couldnt send somebody to help. The doctor evaluated my mum, all was in order, no injuries.
Last night my mum said she would spend tomorrow in bed, and have a bed day. I fear that she will be bed ridden from now on. My mum fears that if she has another fall, that she will go to the hospital and not get back out. Again, the research never stops. Always looking for that one answer that will tell me how much time is left, but as my mum always says "nobody has a magical crystal ball that can tell the future".
I love my mum to bits. She is the bravest person I have known. Her journey has taken her to some very dark and painful places, I just hope when her journey stops she is in peace. As for our journey...as a family that will one day cope with the lose of the glue that keeps this family together, we need to be there for each other. I love you mum!
I hope this helps somebody, somewhere. Or maybe I just needed to tell our story so far...
by fritztheraven on Tue Jun 30, 2015 08:28 PM
It has been 2 days since the fall and a lot has changed.
The night after the fall she was "away with it", her mind seemed switched off. As if on autopilot. She couldnt do the simplest of tasks, and she was always trying to take her oxygen off. She slept without the oxygen in. She was slurring her words. My dad said she was like a dementia patient, the way she was. I was woken up the next morning by screaming and shouting. Apparently during the night, my mum had managed to move herself to the bottom of the bed, almost falling off. My brother and dad were trying to help her back up to the top of the bed. She was shouting and swearing. It wasnt her... Later that day, she seemed more calm, but could not remember the events of that night/morning.
The doctor came to see her, and decreased one of her doses, just in case that was the cause of her "dementia" episode. She has been on about 23 tablets a day for 3 weeks, so maybe this is them finally kicking in and its too much. Her coordination is still off, and cant eat or drink without spilling. She is bed ridden at the moment.
The hospice nurse came to visit. She thinks that my mum had a small stroke last week, and that was the main cause of the fall. My mum did complain that morning when my dad and brother were helping her to the top of the bed, that her left leg couldnt move...
They are sending a nurse over tonight to look after her, to give my dad a rest. He has been her carer 24/7 as me and my brother are working.
I hope mum looks a bit better when i come home from work tonight.
by fritztheraven on Wed Jul 01, 2015 09:03 AM
Hi, thanks for the recommendation.
I've done a little research on this 3bp drug, and from what I've read it will cost so much that we won't be able to afford it. I read somewhere that it's 28,000 a month... If we had that money we wouldn't hesitate.
Do you know if there are any places that can administer the drug that is more affordable?
I'm not sure how much drugs will help at this time. She is in the advanced stages.
by fritztheraven on Sun Jul 05, 2015 05:54 PM
Once again, thank you for your help.
My mother passed away this afternoon. She was trying to fight it in her final hours. She was restless, and constantly groaning. Sometimes saying "no". She was put on a syringe driver 72 hours prior to her passing. I could see she was scared in her final hours.
I love you mum. You are the bravest person I will ever know. Thank you mum
by vanisle on Thu Oct 29, 2015 03:02 AM
by fritztheraven on Thu Oct 29, 2015 09:27 AM
Hi Vanisle, thought id try and send a reply as soon as i read this. It has been 4 months since the fact, but what may seem as being a sad place is rather more an essential place now. To try and help as much as I can. I am so sorry to hear about your diagnosis, and about the way your family is towards you at this time. I can only really try to give help using my experience in the past, and the thing about cancer is that nobody every goes through the same thing. Everybody has a different journey. The truth of the matter is that no matter how much I tried to imagine what my mum was going through, it always turned out to be just that....imagination. Nobody can really relate to what youre going through other than people that are going through a similar thing. That is the beauity of places like this. One thing I can say with confidence is that they do not hate you for getting cancer. I am not sure of what your overall diagnosis is, and I do not mean to pry, but they may be trying to come to terms with the future. I am shocked to hear that there have been sarcastic retorts from your family. That does not help. I hope there are some other people you can confide in at this time, like your friend.
What you are going through is something your family cant comprehend, I know, my family were the same (myself included). My father was pretty much my mums carer in her final months, which took a strain on my dad. I was working a lot, but I tried to be by her side as much as I could. My brother couldnt handle being around, took extra shifts at work, and tried to be as distant as possible. What im trying to say is that people have got different ways of trying to deal with what is happening. Your family may be acting out in this way because they are trying to deal with just how unfair this whole situation is.
"You let your Mom live feeling your love. She passed knowing she was loved. I've forgotten that feeling. I'm sorry you lost your Mom".
I was very sorry to read that. I hope you get that feelinng back, i really do. I do think your family still love you, they are just trying to cope. I really do hope things begin to settle down at home. It may not seem like it now, but your family do love you. Not only that, but your friends love you. It might not seem like that at the moment, but just know that you are loved.
All the best
by vanisle on Thu Oct 29, 2015 05:06 PM
by Kalashnik on Fri May 06, 2016 11:13 PM
Hi Sorry about Mom But have you heard of the drugs stutent. Very successful Brand new drug just approved March 206 called Opvido. Very successful for lung cancer. Please ask her doctor for it
by fritztheraven on Sun Nov 06, 2016 05:37 AM
First I must apologise for not replying for so long. Sometimes things seem to get in the way.
I really hope that things have calmed down in regards to your situation with your family. Tough times like these are when family should really rally together, but times are hard. Nobody is going through what you are going through however. Or at least at the time of my reply, I hope this is the case.
I hope you are doing well, and still fighting. Most of all I hope that this stage in life is behind you, and that you have recovered, or in the stages of recovery.
Again, i apologise for the length of time it took to reply. I pray all is well.
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