No ‘targets’

You are not alone in your feelings. None  of us really know how long we have got but cling to things we can look forward too.

I was told I had 2 years left a year ago and just having had this Christmas wonder if I will be here for the next one.

fortunately I feel fairly well at the moment and enjoy hobbies. I too play the piano and the guitar for my own pleasure after breakfast in the mornings,

I wait from scan to scan my next scans are in February when  I will see if the tablets I am on are reducing or stabilising the growth so far every scan has shown progression. 

my daughter is meant to be getting married in May and has delayed it a year due to covid. She will go ahead their time with as many people she is allowed. Hopefully the vaccine will allow us to do more in 2021.

I also get tired and sleep in the day on the sofa. I do what I can when I can 

love xxx

I think everyone feels the same , either all of the  time, most of the time, or just when they are feeling under the weather. I sleep like a bear in hibernation most days and just try to enjoy the laziness. If it wasn't cold, dark and miserable with lockdowns following us around I think you may have have a few more optimistic feelings.

I am led to believe I have probably had my last Christmas but I follow ruthjp in saying I do what I can when I can. You know as well, from your own experiences, new treatments on the horizon all the time. Scans always make you feel twitchy and worried but good luck with yours. X

Lellynelly. I’m no where near my sell buy date. However I do find myself sleeping a significant amount of time.  Each event I wonder is this my last Christmas, birthday etc.. if not my last will I be able to enjoy the next in the same way.

I try to bare apply mindfulness as much as I can, as anndanv has on her signature, yesterday is history, tomorrow a mystery and today a gift..  if you’re tired rest, do not feel guilty, do not try to think what it means 

I know it’s easier for me to say and I’m sure when I’m nearer the end of my journey I’ll feel the same. I hope you can gain strength from where you can find it, this group, your local groups, hospital etc.

you are certainly not on your own in you feelings. 

Hi Lellynelly

You're definitely not alone Lellynelly. 

 I have cancer of the bone marrow, MDS, which affects my red blood cells and I need treatment weekly by way of self administered injection. I am tired constantly because my blood doesn't have enough oxygen. I can only be active for 6 or 7 hours a day, I fall asleep constantly. I love gardening and work in it most days but if I do too much I sit down on the settee and fall into a deep sleep.

Sometimes my white cells go low which can be the beginning of AML, Acute Myeloid leukemia. That's when I wonder if it's the beginning of the end. My haematologist says he can't give a prognosis because "different people go down at different rates". I get a blood test every 4, 6 or 8 weeks. For the last 3 tests my white cells are absolutely borderline.

Each Christmas and each birthday are precious, I am happy that I have reached these landmarks in time. 

Good luck for the PET scan on 4th January, I hope you get good results.

Take care and stay safe Lellynelly, lovely to meet you but I so wish we met elsewhere.

Tvman x

 Dear Lellynelly you're not alone. I've taken a few more steps down the road this year, and feel I've passed the beginning of the end. 

I'm not sure when the skylarks start singing but that's a lovely thought, I'd like to have another spring. This spring was so beautiful but most of us were shielding this year. I'm also sleeping a lot more and struggling with pain control. I used to worry about sofa days but now I think of them as days in the bank. There's no point flogging a dead horse and I think it helps to build up some reserves. We met our sons and DsIL on Mon for a dog walk, today I couldn't walk the length of myself, but it's not all downhill, I'm sure there are plenty more good days in the tank.

I think it's O.K. to feel sad at times, as long as it doesn't drain you and spoil the things you do enjoy.

Sending bigs hugs xx

Dear Lellynelly - it is a funny time of year this time between Christmas and the New Year.  I have always felt low during this period.  I honestly wouldn’t worry if you have sofa days - just sleep and rest and try not to worry about ‘what next’.  I hope you will be here when the skylarks come and for a lot longer.  Sending you love xxx

I'm new to this group but I cannot believe you are feeling the same as me. Since finding out I had lung cancer a few weeks ago, all I could concentrate on was being with my family for Christmas. Now I've achieved that I feel so down that like you I lie on the sofa not wanting to do anything. Last night I decided to get up and do something everyday and while doing it think of it as normal, not I've got cancer. Today I got up, my husband and I drove to a nearby lake and had a little walk before I got breathless. We sat back in the car and drank a flask of coffee and went home again. Just being away from the four walls, stopped me thinking and feeling sorry for myself. That short time being out in the air totally changed my mindset. Now im not even sure I want to know my prognosis. I'm so glad I found this group because I hope I can reach out knowing people are feeling exactly like me. Thankyou

Hello again Mowgli65. I can only quote a wonderful person on here who said

" we are living with cancer not dying from it"

We all feel like you, of course we do, but things WiILL become easier for you and your family.

Well said Norberry wish I'd posted that  xx

I'm so sorry you're having to deal with all this in such unprecedented times.

Today sounds like a good day and I hope there'll be many more. 

I understand your need to know, I was the same, and can also see why your husband doesn't want to know, my twin sister couldn't deal with my prognosis. (Her husband had just been diagnosed with Lewy Body Dementia) Denial can be a useful coping strategy. 

I think most of us would agree that we do better when there's a plan, as daunting as the plan may be. Each time I've changed chemo I've had increased pain at the beginning and think of it as a positive sign, the tumours are reacting to the treatment so there's some 'tumour flare' and things will settle down. It can be extremely challenging to work out what's side effects, what's disease progression and what's unrelated. My Consultant goes by how I'm feeling above anything else, then scan results then blood tests.

We all have sofa days and sometimes they're exactly what's needed. Today you got up, dusted yourself off and went out with your husband. You've got this. xx