Hi Matt, I'm so sorry to hear how fast things have happened for you both, its hard to take it all in and the feeling of negligence just adds to your pain as well.  Don't start despairing yet as a positive attitude goes a long way but I accept it is difficult to not think the worst.  My husband has stage 4 lung cancer, like your Mum the doctors did nothing for five months despite five x rays showing a shadow on his lung, this was March 2017 and he was given a 7% chance of living beyond the year, chemotherapy, radiotherapy and lots of love and care have contributed to him still being here, so from such a small chance he's beaten the odds.  Support Mum, which I can see you will from your post and make sure you have all the back up you will need, the oncologist and the McMillan nurses will help you to understand what is happening.  Take care of yourself and let us know how it is going.  Thinking of you both,, Carol 

Hi Matt, at least they are now being concerned and not taking any chances, it's horrible the waiting you feel left in limbo.  Let's hope that when you have the new biopsy a care plan will be put in place, under guidelines the NHS are only given a certain amount of time from diagnosis to a treatment plan being put in place, so keep asking questions, get Mum to agree to you being allowed access to all her medical procedures, this will be noted on her file and means you can speak to people on her behalf.  Stay strong Matt.  Carol 

Thanks again, Carol - really appreciate it. 

Mum has been discharged and has been given steroids for the swelling and morphine for the pain. I think she's glad to be home as she hasn't really slept in over 3 days. She's spoken with the cancer care team and they'll be getting back with next steps on care plan once biopsy is in, but from the conversation they had with my mum and aunt earlier, they think she's a good fit for chemotherapy. i'm just praying that they let her have this as she's wanting to fight it. I've seen the notes though and privately I'm just not wanting her to get her hopes up (I will of course remain resolutely positive in everything i'm doing and saying for her). 

And god bless the fact that she is remaining very positive about it. She hasn't stopped talking since being in A&E last night and is currently laughing and joking with my aunt. I can't believe the strength of this woman. I want to make sure that everything i do for the foreseeable is about making her feel better and making sure she knows how much she means to all of us. 

I'm absolutely exhausted, physically and emotionally shattered. My heart goes out to anybody whose had to fight this. I will no doubt post back to this when I have a moment of despair and doubt. 

Matt, you're welcome to do that, we all bolster each other up, Mum has the right attitude and you need to go with that, most cancer patients want to fight and to see life as normal as they can.  Take care of yourself as well.  Carol 

Thought I'd update this, as I often see threads which get left almost unresolved, and perhaps some people will take comfort from hearing about other experiences.

So mum is still with us. She's undergone three rounds of chemo, due to start round four next week, buthas been in a specialist hospital the last week or so, as her blood count went really low. She needed to have a blood transfusion and is only now picking up again a bit. But this is the second time she's been in hospital since starting chemo, which I think is leading her to worry they'll say she isn't strong enough to continue. 

When she was in last week, the doctor ordered an MRI and CT scan of her back, as she's been in a lot of pain with it over the last month. After a false negative misdiagnosis (don't ask) we found that the cancer had spread to her spine and was causing havoc with bowels and bladder. She underwent her first radiotherapy treatment this Monday. Apart from being in a lot of pain, she is in good spirits. 

We saw her oncologist earlier today, who explained that she had responded 'excellently' to the chemo, that the lung tumour had been shrunk to almost a fraction of the size, and that the other nearby tumours had followed a similar pattern. But he was careful to caveat that the cancer would likely spread quickly again once the chemo is stopped, and so also suggested she have radiotherapy on her chest to see if that can help slow this down.

Words cant possibly do justice to just the smorgasbord of emotions that this last two months have brought up. From positivity and hope to crushing despair, often in the course of the same day. And though it's been unrelenting in the challenges it's brought, I am glad that we're all getting to spend some more time with mum. 

She is resolute in her positivity, and we are all trying to do the same. 

Hi Matt

Just read thru your posts.

So pleased your mum is in high spirits even though she is going thru some tough treatments.

Lovely to get more time with your loved ones.

My husband was diagnosed in Feb this year and has just had 1st chemo on Monday. So far so good but I know the next few weeks will be tough. He's been told 12 months, but he is so fit and well in himself that we are all finding that very hard to imagine

So we too are of the positive mental attitude team!!

Hugs

Wanted to update this because I know from experience that it can be frustrating when people leave these posts unresolved. 

So, mum passed away almost two months ago. Still feels weird saying that.

She got admitted into the cancer ward with suspected COVID-19 (this was just before it was really kicking off) but then was told it was 'just' a chest infection. Then they suspected COVID-19 again, and she just didn't get any better. As it turns out, the official death cause has been listed as neutropenic sepsis, which they think was caused by a jab she got to strengthen her bones. There's an inquest happening, which we're due to hear from in a few weeks.

In the weeks before it went really downhill, we had been told that the chemo had shrunk the lung tumour to a speck, and that the other surrounding areas had been obliterated and didn't show up in her scans. So we were positive. But then we were told that it had spread to her spine which, bless her, had crushed some of vertebrae. She must have been in absolute agony. 

I had been up in Sheffield working from mum's house since we got the diagnosis in late December, but had come back to London the week before it all happened as I had work meetings I needed to be at. During that time, my housemate came down with suspected COVID. This meant that the hospital told me I couldn't see mum at the end. Still feel bad about that now, but to be honest I wouldn't have felt comfortable going into a hospital with a lot of immunocompromised patients. My relatives have urged me not to feel guilty, and there is still a part of me that wishes I'd have got to be there. But she got to see her other sons and her sister.

She, like before, was unwavering in her positivity, right until the last. We had a big chat the night before I left, and she told me that I'd done everything I could for her, but she wanted me to go on and live my life. I didn't realise at the time, but I think that was her saying goodbye then. 

We managed to have a very small funeral for her, but plan to have a memorial in Glasgow (where she was born) on her birthday next year - when hopefully things get back to (relative) normalcy. 

Still feels unreal. I have days where I feel ok, and then others (like today) where it really just hits you like a train. But I've realised the days where I'm fine it's because I'm not thinking about it or her; I guess that's a coping mechanism. 

I hope everybody is doing as best they can during crazy times. And sending love to anybody who is going through a difficult time.  

Matt I have just read through your posts and my heart absolutely goes out to you.

I am embarking of a journey of unknowns with my own mum right now.  A recent hospital admission for a bowel obstruction led to a CT showing a nodule on the lung.  We await results of PET and spirometry tests, but my mum has many comorbidities so it is a very worrying time.  Add to that the complications that CV19 is bringing to the table.

It sounds to me like you done everything you possibly could for your mum and she knew that.  The CV19 situation has created unimaginable events for people not being able to say goodbye properly, which is something that mulls around in my own head during this journey. 

Your journey with grief is at a very early stage so be gentle with yourself.  Don't expect too much, too soon.  You never get over it, you just learn to live with it, but it takes time.

Stay strong.  God bless