End of treatment

Since I’ve been weaned off steroids nerve pain has been a major factor especially at night. I’m lucky that several of iur group know only too well about this & how it wrecks your plans and definitely your sleep.

anndanv Norberry tvman your advice has been spot on, thank you!

My Mac nurse wanted me to go into the Hospice for a couple of days to sort out pain relief, but I said no. We’re working hard to do everything we can so I can stay at home.(and I needed to finish the Memory Walk) My GP spoke to my Oncology Consultant and he’s upping the steroids for 4 days, keeping a small  of gabapentin & planning to switch to a different nerve pain med next week.

Love a good plan. Last night I could have cried with relief as Sula and I glided upstairs like royalty and armed with ice packs for my back which fell like it was breaking. I’ve been told to take the steroids at 8am and 12 md to reduce the night time steroid party for one,  never been told that before & it’s worth a try.

Our brother was moved to the ward yesterday after 8 nights in ICU Nutrition is the next challenge but so far so good, hopping to be able to see him in a few more weeks.

Hope everyone has a good weekend xx

Hi 

You're one brave lady, opting not to get pain relief for your back but I understand your reasoning behind your decision. 

Oh, that feeling of your back about to break. I have that at least a dozen times a day, yesterday I was trying to move soil from one part of the garden to another, just 6ft away. I was sitting and digging, putting the soil into a wheelbarrow and then with my wife's help, tipping the soil into a raised bed we had made. The pain was unbelievable and I have said many times that it feels like my back is hinged across the small of my back and it's as if it is bending the wrong way and about to snap. Even thinking about it makes me feel where the hinge is!

The pain became almost permanent, even while sitting, and I had to leave my wife working at breaking up the soil, and head indoors. I was so cold that I couldn't sit and talk to her but it upset me a great deal to leave her working alone. The ignominy of deserting her and trudging away was harrowing. I was apologising profusely and she kept reassuring me that she didn't mind. And all the time I was casting my mind back to 30 years ago when she developed a spinal problem and couldn't walk for 13 weeks. An operation was the only option, which she took, and walked out of hospital. She still has a weakness there though.

I hope you have a pain free weekend (is that possible?) At least have a good weekend with friends and family. Are friends allowed yet with you? I haven't seen my best mate for over a year, strangely enough he has severe back pain too.

Take care and stay safe Tinalay

Tvman xx

HI Tinalay, so sorry to hear this , I too had the same conversation with my doctors about 12 months ago now , they gave me 15 months , I really struggled with chemo and many hospital admissions and 3 operations but it still came as a shock when the doctor says there is not anything else they can do . 
I have 2 daughters and a fantastic wife , very supportive family so going to them and telling them was a real block in my head , I mean how do you even start the conversation, what made it a little worse was I actually got an all clear and we all celebrated as a family , 6 months on and the liver cancer came back , they tried to operate but when they looked they just closed me up again , a lot of cancer cells around 20 I could see from the surgeons  report .

my wife told the kids as I just was not strong enough mentally at that point and I honestly think they all was expecting something anyway , i actually texted the rest of the family , don’t get me wrong I still had the one to one conversations with them all but it was strange that my family and friends said it gave then a moment to reflect what I had told them and then they  took the time to reply , the reply’s made me cry I have to say and after a few weeks of this type of calls I had done the rounds with the most close people and emotionally drained.

I keep hearing of friends who know someone who has been diagnosed with terminal cancer and they are still around after years , so who knows.

bottom line is I totally agree with quality of life and my decision to not have anymore chemotherapy I feel is the right one . at the moment the pain has been managed with pain kills but the doctor introduced steroids and I have never felt so good from and energy point of view .

sorry for the long message . Just thought I would share . 
ps really helps to read your messages .

we are not alone .

You are brave to share this it is hard for all of to go through and writing it down can help.

Sorry to hear about your pain and for tv man as well. I do have emperor nerve pain when I had a slipped a slipped disc they gave me gabapentin and amitriptyline and all sorts but only surgery helped in the end. I still candy stand for long periods without severe pain. Only really happens when I do cooking and I have to take breaks to sit down .

I hope they can help your pain in the hospice once you have completed your memory walk, so good to have a goal.xx

Hi Tinalay, sorry to hear about your pain as you say it is a major factor at night, like you I get into bed and bang there it is pain pain pain in back, but how lovely gliding up the stairs like royalty despite feeling like you do,  small things make a difference.

I wish you pain free days and nights and happy gliding up and down the stairs

xx

ps, in answer to your question about the badgers, my OH has been talking to them for years and they seem to understand him they sit when he tells them to as a dog would, and the other night all he said was SAY CHEESE and they all posed, luck more then anything else, but they do seem to understand him.

Thank you Tinalay xx

Hi Tinalay - I had a collapsed lung quite a few years ago now - it’s incredible how much fluid they can get out.  Mine was drained manually.  it is the most weird feeling breathing in and the lung not inflating.  So sorry you have had to make the hard decision re your chemo but glad you are feeling well.  Have as many hugs as you can.  I’m going to see my daughter and grandkids at Easter and I’m gonna be hugging!!

Hi Mike g, As Ruthjp has said, I do hope writing it down did help in some small way!

The thing is, no one, not even the professionals know how long people have got and I am confident you will exceed your estimated 15months. It is the hardest thing I have ever done, telling my family I had incurable cancer and like you, I got my husband to tell our son then we both spoke to him later. We were both there when my husband told our daughter and at that time I was given 5-7 months. I am happy to say, I am well past my sell by date now but every time we have had to tell them I need another op, we are all thinking could this be IT! Chemo doesn't work for my type of cancer but I will always choose quality against quantity.

It would be good if you stick with this Group now, where we all support one another and know whatever we say here will not get back to our families! Thanks for sharing!

Hi Tinalay, I hope the pain gets under control very soon. Gabapentin is good to take an hour or so before bed as sometimes it can tone the pain down a bit. I was interested to read you took an ice pack to bed. I did try that for a while but have found a hot water bottle works better for me. Everyone is different! It is great you take Sula with you on the chair, her small legs will appreciate it I'm sure! Just make sure if there is anyone at the top or bottom of the stairs, you practise your "Royal Wave"! I wonder how long it will take your husband to have a go! Lol! It is great you can now conserve your energy for the important things like "Memory Walks"!!