Staying positive

Hi Lellynelly

I'm so sorry you have had to join us, I'd prefer to have met you elsewhere. Welcome to the group

A lot of us have gone down that road, it's so easy to think what might have been and think about our family.  It may be of some consolation to know that there are a few members here that have been told they only have 6 months to live and are still here many years later. I have MDS which is a rare bone marrow cancer and when I was diagnosed at the age of 57, I didn't think I would reach my 60th birthday but here I am at 62½ and still going

Try to be positive and learn to live with cancer. You'll have so much more time on your hands when you leave work to spend with your family. 

I've just read your profile and you sound quite positive. I am also a wheelchair user which came about as a result of spinal degeneration which was diagnosed only 4 months after my cancer diagnosis and for a year or so afterwards I was in depression. A lot of what I wanted to do seemed to be down the swanee.

You should still be able to do some of your interests. Just recently I have redesigned and rebuilt my vegetable garden with high raised beds and space between to manoeuvre a wheelchair around. There's a gardening thread in our incurables group. Have a look and see what I have done. Mrs Tvman was a great help and support to get that done. It was painful, very painful. I'm awake now because of pain, I rarely get a night's sleep, I'm on a high dose of morphine but still once I get out of my chair the pain builds very quickly to a horrendous level and I need to sit down for a while. 

There'll be others coming to greet you also, everyone is very supportive and simply a lovely bunch of people who care a lot.

I'll see you around then Lellynelly

Tvman x

Hi tvman. Thanks for your lovely reply. I have now updated my profile! I hope that there will be others on here to befriend. Living with terminal cancer can be a pretty hard space to be in. Although I think it’s worse for my husband as he is the one who will be living with it for years to come. I used to like gardening but it has all gone downhill since I’ve been ill. 

Hi there a warm welcome we have all been there it is a roller coaster of a ride don't think too forward it will panic you live for each day and make the most of it keep fighting on you will get loads of support on here xxx

Hi Lellynelly,

Welcome to the group. I’m a newbie here but have been in the H&N group since 2014. 
I read your profile and you certainly have been through it & then to get an incurable diagnosis is devasting. 

I hope you stay well enough to enjoy the recent things you’ve managed to do again. Keeping busy, pain free & having the right support is key. 

At least you can come on here and let your frustrations out as I think we tend to bottle things up to protect those we love and try and be brave for them. 
This is your time now to do all the things you want to do! 

Sending all my best wishes to you.

little-fi x

Hello Lellynelly You've been through so much in the last couple of years, I can barely comprehend it all. I'm so sorry to hear that you've now been given a terminal diagnosis. It sounds as though you really made the most of the extra year despite gruelling treatment, and I'm so glad you're retiring to spend this time with your family.

You sound like such a positive person who lives life to the full. I think you also need to allow yourself time to grieve. It's not possible to be upbeat and positive all the time, this is hard. I think you have to acknowledge that before you can reach your new normal, you're already doing so much of what makes life worth living.

Do you have a palliative care team? Other members of the group have said that makes a big difference especially when it comes to managing any pain.

There have been some really supportive posts in the End of Life group if you felt up to having a look there but it's not for everyone.

You'll get plenty of support here, day or night. 

xx

hi Lellynelly, welcome to this incredible group which no one wants to a member of, but here we all are

Sorry for they delay but I'm having trouble with this site as I have done for quite a while, so out comes the laptop, fingers crossed, I was the same as you, worrying about what I will miss out on etc, that will get easier in time, I was told in March I had 6-12 months, WTF, I gave up didn't want to do anything, didn't want to garden which I love, till my partner got angry with me and told me that I was still here so get on with it, sometimes we need a kick up the backside it did help, then started getting treatment, don't know how long it will give me, but my consultant said she had loads up her sleeve and they are big sleeves, so hold on tight don't give in make the most of everything, it has also helped my partner come to terms with it a little better, like your partner he will be the one left behind and has to go on living which they will.

You want to know how people live with cancer but not let it consume them??? some days it will and some days I don't give it much thought, so don't worry if you have bad days and get angry, sad cry and every emotion you can think off, so keep going it ain't over till it's over and that could be years away which we all hope for, and some on this group have long gone past their sale by date,

stay strong xx

Good advice Popgate