I don’t know what to say

I’m so sorry to read this  no wonder you don’t know what to say. Covid has robbed so many of us of the chance to make memories with our families. I got very low in the first lockdown when all our plans including my nieces wedding were cancelled, I was having chemo & shielding, not allowed to leave my own house & garden & feeling sick & tired....things have improved since then.

it’s an impossible position to be in, you do have some wriggle room because of your prognosis, you’re allowed to bed the rules preferably with the knowledge of your GP or Oncologist.

like you I’ve been told there’s no more treatment but i’m on high doses of steroids for pain control & they’re giving me energy & a feeling of wellness. I don’t know what to expect other than a gradual decline and have been told we’re talking of weeks possibly months. I want to spend the time with family & friends & am grateful that the restrictions are being eased & that it’s Spring & not the dead of winter.

Someone said as you can’t control your circumstances you need to work on the anxiety around them. I have a lovely councillor who helps, some people meditate or have a strong belief system. I would make some plans with your grandchildren & family. You need things to look forward to. 
Are you worried about the practicalities? There are things you can think about and put in  place with your Macmillan Nurse and you can talk to a benefits officer to see what help is available. There’s a grieving process for the future you thought you had, it’s all just very, very hard. Thinking of you I’m sure you’ll get some good advice & lots of support from this group xx

Hi Tinalay

i have not not been told how long as my consultant can’t say and has for my nurse I have not seen her since 2019 when I was told. I have had no support from anyone only my family and friends so basically am on my own, I have rang my cancer nurse and left a message but no call back the same with my lung nurse, so you see I am dealing with this on my own. I found it very hard since lockdown in the house on my own until my husband comes home from work xx

free12 

Hi Free 12, Welcome to the Group but sorry youhave to be here! I actually do not understand why you have not seen your specialist nurse since 2019, that is shocking! This is not something you can cope with on your own, no one can, that's why we are here. When you saw your oncologist was anything mentioned about possible drug Trials that may be available?

If I were you, I would speak to my GP and ask him to refer you for counseling. Or phone the 0800 number on this site, to speak to a McMillan nurse for advice but please, talk to someone!

Lockdown has made things very difficult for most people, it seems to have been going on for such a long time! Do you have any hobbies or interests you could do while your husband is at work, to keep you occupied? I do jigsaws online, read and knit dolls clothes for our youngest granddaughter's doll. We are lucky to have 2 granddaughters and 1 grandson who live nearby. How many grandchildren do you have? Please speak to someone and let us know how you get on. There is help out there,, you just need help to find it sometimes!

 I’m shocked! It sounds like you’ve slipped through the net NOONE can or should face this alone. anndanv is right.

Your GP will refer you to Macmillan and you’ll have  a designated nurse who will liase with your team. Your care switches back from hospital based to community based & you may well have a community nurse tooYou can get counselling, benefit advice, do an Advanced Care Plan etc with your Mac nurse.

You can ring the help line day or night, that’s what they’re there for. We’re here day and night too.

It may be that your family are too scared to talk. They can talk to the Macmillan team & councillor too....How is your husband coping? I know what you mean, it’s a long day on your own while he’s at work. How do you feel in yourself? Do you struggle with your breathing? That increases anxiety 10 fold.

Please do contact Macmillan & let them step in, you need all your energy for your family & friends xx

Hi Anndanv 

I was told cos of Covid it was best to stay at home as it would be safer for me, when I saw my consultant in January I was told that my last treatment was not working anymore more and that if I went out of my area for treatment I would have to pay for treatment but there would be no guarantee it would work but they would keep looking, in April I go for a CT scan and then I see my consultant a week later to see what is going on 

thanks Free12 

Hi Tinalay

it was like that in 2012 when we tried to get hold of Macmillan for my father-in-law as he was living with us as he had cancer we tried all weekend to get hold of them it was Easter weekend but we needed them but my father-in- law passed away on Easter Sunday so by the time they did ring back on the Tuesday it was to late so you see the Macmillan nurse in our area is not good. The doctor was not happy about it and he had words with the nurse that should have been there for us and her answer was that she was busy.

thanks 

Free12 

I’m shocked and sad to hear that  I’ve had some mixed experiences but that’s terrible. Do you have a local hospice or a community team that could help? Don’t forget the helplines on this site too xx

Hi Tinalay

my husband wants me at home when the time comes so am just getting on with it. My husband’s faith in the community Macmillan nurses  is not good at the moment, so you see I have to think of him as well.

Thanks  

Free12

Hi Free 12

I am shocked at the lack of support you are getting from your cancer nurse, oncologist and GP. As far as I know you are supposed to be given a 24 hour helpline number for your cancer service when you are diagnosed. This is so you can phone if you have problems when you are having treatment etc but they will follow up if you have been unable to get hold of your specialist nurse. This is separate from the Macmillan service. I know that things are different depending on where you live but I thought that was standard practice. 

Nobody should be dealing with this as alone as you are. I can understand that your husband wants you at home when the time comes but the time hasn’t yet come and you need someone now. You can’t just get on with it in the house on your own all day.

Please phone the 0800 number on here - they are wonderful and will be able to help with any questions before your appointment in April.  Phone your GP or your lung cancer nurse but don’t leave it till the Easter break.

Please let us know how you are getting on.

Patmart

Hi Free12, Like the others here, I'm shocked you did not recieve a card with a 24hr emergency number on it, as Patmart said, they are standard everywhere. I can understand why your husband now has little faith with McM and I am sorry you have come up against the exception rather than the rule. 99% of people have nothing but praise for McM. However you can get referred by your GP to any Hospice near you that may be run by Marie Curie or someone else. Contrary to popular belief, they are not just somewhere to go to die. They help you with living the best life you can, for as long as you can and support the whole family too! They have counsellors, physiotherapists, Occupational Therapists  plus much more. 

Regarding going out of your area for Trials or Treatment, I am in Scotland and know people who have gone to Manchester for treatment or a suitable Trial. They payed for their own travel but not treatment.

I think you and your husband should write down on paper ALL the questions you need answered. Then you won't forget them on the day you see someone!

You need help now, as Tinalay and Patmart (& me too) have said, Please phone the helpline here. I'm sure it will be a different experience for ýou as they will help, any way they can or tell you who to contact!

Please let us know how you get on. When in April is your CT scan? Is it soon? I wish there was more I could do but now you have joined this Group, we are here for you! As you see, day or night as it is now almost 3am!