Living with incurable cancer - incurable patients only

This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here.

Catch up and a change of thread

Maz59
Posted by

Not been around for a while and did a quick look through the threads today which were mainly 2,  Green hands and 3 good things. 

I can see they have other things in them but I thought I would switch to a new thread as I am exhausted with gardening, my back is aching and I have broken a toe with no effort at all so I don't want to think of any good things. Sometimes you just have to live in the now and acknowledge things are crap today especially as I know they will improve tomorrow. 

I have noticed we have alot of new people recently so hello to them although I wish they weren't in this group for obvious reasons. 

Got my oncology consultant appointment coming up next week and just hoping the meds are doing their job and I don't need changes this time. Although we all know it will probably be more scans and awaiting results before we get any answers. It feels like everyone I see someone I am saying " just waiting for scan results".  I suppose the time to really worry is when there are no more scans. Well that is a pretty depressing thought. 

On the bright side I have a big birthday coming up in June and although I wasn't going to celebrate I now am, as 2 years ago it was not thought I would make it to this one. I share my birthday with my daughter (born on my 21st) I know how to have a good time folks. Anyway we are having a family weekend away with my siblings joining us on the Saturday. My husband said he did not want me doing much and getting tired as it should be my day, they just don't understand the organising and stress is all part of the fun. 

I am actually very well at present and making the most of things I hope you are winning your battles and keeping the cancer under control. For those who are struggling I am sending big hugs. 

Maz 59 

tvman
Posted by

Hi Maz

Like you, I haven't been around for a while either, l had some sort of virus that left me shivering, sweating and just feeling rubbish, so much so that I had almost 2 weeks in bed.

Well it's gone now thank goodness because later today my wife and I are flying to Stansted and getting the train to Peterborough to stay the weekend with my daughter.

I have so much gardening to catch up on but once I get out of my wheelchair and start crawling around the ground, the pain comes very quickly. Oh! I shudder to think how painful your toe is, and the back pain is awful, yikes!

When I was diagnosed in 2015, I tried to find out as much about Myelodysplasia as I could, and no way did I think I would see my grandson running around shrieking with laughter or running up to a lift and pushing the button to call it. Neither did I think I would see my 60th birthday. 

Well, I'm delighted to tell you that I was 61 last month and my grandson was 3, three days later. He's running around like someone has wound him up tightly and let go! It's just a pity that he lives in Peterborough and we are in Northern Ireland. We try to get to see him every other month. 

So Maz, enjoy your birthday and celebrate it so much with your husband and family. You and I are both experienced enough with cancer that we know to enjoy the now when we are "healthy".  Keep smiling Maz

Tvman xx

My philosophy is simple, love life and family.
Maz59
Posted by

Sorry to here you have been so poorly TVman but glad you are improving and have a great time with the little one. 

My grandchildren will be 7 and 8 this summer time really does just fly by ( except when you are waiting for results of course). 

We are managing to get up to see ours at least once a month sometimes more which is a blessing as they change so quickly. 

Before Cancer I had this plan that my husband and I would look for something near my daughter and family when my husband retired. When I was given the terminal and counting diagnosis I did not think it would be fair to do that (up sticks to a place my husband had no friends or places he knew then go and die on him).  Some days though when I am really well the pipe dream returns and I want to be there to pick them up after school, help out with child care and have them stay over etc. Then we go up for a few days they run us both ragged and we are glad to get back to our own home and relax. so at least for now we are making the most of the visits and staying put. i have just booked a 4 night caravan stay not far from where they live in the summer holidays and my daughter is going to drop them with us for a few days so that will be nice. 

i am really looking forward to my birthday now and just ignoring the figures. 

Love Maz

Maz 59 

tvman
Posted by

Hi Maz

Good to hear that you are looking forward to your birthday and also the caravan stay and you'll get the grandchildren for a few days. Your grandchildren will be so excited that they are going to stay with Granny and Grandpa, no doubt you'll be treating them a lot. I'm smiling writing that last part because I know how happy you'll be! As for the figures, it's just another number. Do they live very far from you? 

You're right when you talk about your husband being lonely, no friends nearby. I was quite upset when I was diagnosed, it totally spoiled my future ideas. I had counselling because my mood was so low and not going to see our dreams fulfilled was a subject that opened my tear ducts when I discussed that with my counsellor. Apparently it's a major topic that upsets people when diagnosed with an incurable cancer.

To see my grandson is fairly expensive, taking into account the flight and the train journey as well as the meals and drinks. Do you know that at one of the bars at Belfast International Airport, they charge £1.50 for an ordinary sized bag of crisps that would cost 65p in a shop. Scandalous! Must be the highest price in the UK for a packet of crisps, I refuse to pay that!

Enjoy your birthday Maz and I wish you a very happy birthday from me.

Tvman xx

My philosophy is simple, love life and family.
daloni
Posted by

Hi Maz and tvman 

how nice to hear from you both and to hear your news - sore toes and nasty infections notwithstanding. 

I hope you have a very happy birthday and great scan results, Maz. 

As for the price of crisps, I remember charging £2 a bag at a PTA event at the girls’ primary school one summer. They did come with a free pint of beer or glass of Pimms, mind you. I’m always scandalised by how much they charge at the big cinemas. I stay with my little, local cinema where popcorn is a very reasonable £1. 

I hope you’re having a great bank holiday weekend, both of you 

xx

Ms.Lin
Posted by

Max, I groan at times at idea of having to think of good things.Often recite my litany of grievances before going on to think of the good things. I do three good things as a discipline and find it does help my mental state. Not suggesting you do it...not even sure why am explaining this, except to sympathize concerning the need to just acknowledge the rubbish.

Hope the broken toe healing well. Have broken toes several times  against doorframes and bedposts stumbling to the loo at night. Not fun!

Tvman, Am so relieved to see your posts. In this group one can be afraid to inquire after someone who hasn't posted.

Understand tears at the pain of unrealizable dreams. As small thing in the scope of things: Hubby and I had always planned to explore an old fortification not far from here. He drove us there last month. I could barely make it from the car park. I spent most of our hour there sitting on one stone after another with Hubby off exploring.  He is interested in history. He wantedt o go on to the the site of an old village, but I couldn't. He was so disappointed in my inability to participate in exploration and conjecture it broke my heart. I cried in the car on the way home whilst he was watching the road and did not see, hopefully.

Lin
Maz59
Posted by

Yes I try to appreciate everyday that I am fortunate to still be here and l am very lucky to still be able to be able to do so much. 

As you say we try to hide our downs from our loved ones which is why it is so good to be able to post on this site about the rubbish times aswell as the good and not be judged and better still understood by others. 

My toe seems to be healing fine thanks and today I feel ready to get to grips with the world. 

My poor husband has a painting job now to do over the bank holiday as I decided to decorate the kitchen. Or rather I decided he should decorate the kitchen, but I have got the stuff ready for him. 

Enjoy the bank holiday the best you can and keep safe. 

Maz 59 

Ms.Lin
Posted by

Thanks for the reply, Maz. I see autocorrect changed my greeting to you on previous post. I have sent out very eccentric messages in the past thanks to autocorrect.

Glad the toe is healing. May all go well with the kitchen.

We are staying home so should be safe.

Lin