Hi GreenKiwi

I don't have the exact same situation but I didn't want to not reply as I know a reply feels like someone is listening which does help. The current situation is absolutely horrendous for anyone with cancer full stop. I'm still finding it hard to stomach that cancer patients are essentially being sacrificed somewhat in favour of corona patients. It feels almost inhumane to me and a very sad place to be. I feel for you so much. Do you know if he would have had treatment if it wasn't the current lockdown situation? Or too far advanced? 

My mum was told last week that her tumour was low grade after it was removed from her salivary gland and that she just needed radiotherapy to stop it from coming back, we were happy. Then this week we were told there were some tiny deposits on her lungs and as such there is now no treatment and that's it. Very hard to swallow. She is completely well currently. It's almost impossible to get a second opinion here or anywhere because of the current situation and as the deposits are small I feel it's important to act quickly which this lockdown is preventing us from doing.

As you have said in this lockdown you can't even see people, all the advice for terminal cancer says spend as much time as you can with loved ones, make special memories, tell them everything you want to etc, how are you supposed to do that if you can't even see them? It really is a torturous time to need care or to need the nhs unless it's for corona virus. 
I don't know what else to say other than I really feel for you and I hope the situation improves as quickly as us humanly possible. And that you get somewhere with Macmillan. 
 

Sending you as much love as I can through here! Xx

Hello Queenie 82. I'm not sure where my reply to you went, but thank you so much for replying and putting an arm around me. I feel in a very deep hole struggling to be heard amongst all the beaurocracy. 

Dad is panicking and very scared. He was given 1-2 months which is no time at all for him and the current climate makes it so very cruel. I hope the timing for your mum is longer I really do so you have time to create memories. How do we as carers do the right thing by our loved ones whilst battling a system that is so torn? 

Sending you - and anyone else in this boat - much love too xx 

So sorry to hear, this, my husband being treated for bowel cancer, had a stoma, then it burst, then another, has a permanent cathadar, and now a kidney bag, I was told to go home prepare that was July past, he was in hospital few weeks back with a UTI, send home because of the corona, must say my GP has been outstanding, district nurses come in every day sort his driver out, he has been battling nearly 3 years, and as his wife, it has been so hard at times, I asked for help with Macmillan numerous times and was very disappointed to be honest, but I believe my husband is a walking miracle, a lot of pray went up for him, don't give up, make them calls, for help and support, my husband up and down, I don't understand him at all, what a journey this has been, but my heart and thoughts with you. Must say these days have been a struggle no family, always happy for a chat if needed, 

Hi GreenKiwi,

I'm so sorry you are having to go through all this at such a horrible time. I'm in a very similar situation to you and a lot of the same things are going through my head. My mum was diagnosed with advanced brain cancer 3 weeks ago. We were offered no treatment - no surgery, radiotherapy or chemotherapy. We were told she may only have weeks or months to live. And that was it. I am still struggling to accept all of this, I feel like there is something they aren't telling us and I can't help but feel like the coronavirus MUST be affecting their decision not to do anything. I know the particular type of cancer she has is incurable and difficult to treat, but everywhere that I've read about it, they usually at least try and slow it down a bit.

I'm so sorry you've not been offered the support you deserve. We really had to seek support out too and Macmillan have not really had much to do with us, I presume because they don't want to risk coming out. We had OT and PT come yesterday to provide Mum with some aids she will probably need in the near future but apart from that, we've not had much support or advice really. I can understand it is difficult what with everything going on but I, like you, feel like they have dusted their hands of her and that's it. It may be worth ringing the GP and seeing if they can chase Macmillan up as they should at least be ringing you and checking in on how things are, regardless of the limitations on visits. 

It's so hard coming to terms with a prognosis like that without having all the ifs and buts swimming around your head regarding why they have chosen not to treat. I keep trying to tell myself that they have acted in my Mum's best interests, even if that does mean not treating her in order for her to have better quality of life. She has agreed that she wouldn't want to go through gruelling treatment if it's going to affect her quality of life and not actually give her that much more time.

Does your Dad have a good network of friends? Does he feel up to speaking to friends on the phone? My Mum's best friend has come round once or twice and they have sat at opposite ends of the garden for a catch up and it seemed to really help my Mum. This obviously isn't ideal but I feel like it is so important for emotional and mental health and also important for Mum to see people before she goes.

I don't really have much advice to offer you, I just want you to know you're not alone and your worries and concerns and fully justified. Sending you lots of love across the ether.

Hi Orchid 

It's so hard to accept there is nothing they can do isn't it? We are in a similar situation with the nhs at the moment regarding my mum. I feel like there is treatment options and if we were in a different country (eg America) she should be given some options at least, even if the outcomes were not stacked in her favour. Since we found out last Thursday (that it's stage 4 and the nhs will offer nothing) I have read everything there is to read on the internet about my mum's cancer. It's very rare so that's contributing to the lack of studies and trials and options for treatment, the fact that she's 72 definitely played into it as the consultant mentioned chemo is not tolerated well in the over 70's (when you add in the corona risk it's hard not to think that without it we might have been offered something). What does your research tell you about typical treatments for your mum's condition? Do you have any opportunity to have a private phone consultation just to get a second opinion? Just to let you know that we have been able to get copies of all mums reports (they have posted out today) by speaking to the nurse specialists. I am using these to fire off in lots of directions, the hope keeps me going. 
 

There is another girl on this forum called Amy and she lost her dad a few weeks ago. She told me to remain hopeful, the statistics are not always right (are often not). I spoke to one guy on Sunday for two hours who has been living with the same metastatic cancer as my mum for 7 years. He has provided some much needed support. Keep reading, keep informed and stay hopeful. Sending lots of love. X
 

Hi GreenKiwi

I've only just seen this reply so apologies for not responding, I also wrote a massive reply to Orchid on here that seems to have gotten lost . 
 

How are things now? Are you any further along or still struggling daily? I've been thinking of you all. I totally empathise with being abandoned by the system. There is no point me telling you to remember that the experts are not always right about time left (if you used to work in cancer research and your mum was a cancer nurse) but I just feel like hope is the only thing you have sometimes, to get you through the day! 

I don't know you or your dad but I am sure, from the fact you are even on here writing about the situation, that you are doing your absolute best for him. That's all any parent would ever want from their children. Look after yourself as best you possibly can. Do you have any support other than your Mum? X

Hi So sorry to hear what you are going through. We find ourself facing a difficult time as my father in law was diagnosed last week with terminal bowel cancer which has spread excessively to his liver. We have been told by telephone without much time to ask the millions of questions you later wish you had. Understably the staff on the wards are extremely busy and we hate calling all the time to ask, each time talking to a different member of staff who doesn't have all dads details and to call later. 
We are really worried they will just call and say he can come home and we don't have a clue what he will need or how he will be. He is very weak and scared, we haven't been told how long he may or may not have or how fast he may decline. 
He doesn't want to go home alone and we are happy  to look after him in our home otherwise we would not be able to visit him. Again we will be scared of bringing the virus to him by going for shopping etc  as we have two other elderly relatives in their nineties living close by who are dependent on us. 
So sorry to rant but reading your post has caused concerned with what we might face. 
I hope you find some assistance during this extremely difficult time.