D I Y CANCER.

, CJ..i'm sorry to hear that, yes always when you think it will get better another rock is in the way..and there is no answer. We only can go on and give it a try. It makes you angry and sad when little things , like communication about when to take blood thinner, make it harder.

Just try to look forward and belive it will all be worth it...fingers crossed.

Pet

Hi CJ  What a shame this has happened, it is very frustrating! I think with cancer sometimes it is two steps forward then one step back, nothing is simple! I don't know why this should be the case but try to just take it a day at a time, if you can. Whenever your treatment starts, Good Luck!

Hi

I hear you! I’m so sorry you’ve had this set back. It’s so frustrating and I always feel so pathetic when I have to say “but nobody told me” like I’m a naughty school girl. Grrrr. 

I am having a similar conversation with my oncologist tomorrow. A ct scan has shown mixed results. My liver tumours are growing but the other soft tissue tumours remain stable. The mri shows the spine tumour has grown from 10mm in April to 50mm now. Currently my life is dominated by weekly chemo and pain from the spinal tumour. I need to understand if it’s worth continuing with the chemo and what would happen if I stopped. 

I hope you and your palliative care nurse can make some sense of your situation. It is so hard to go on. I think I’m close to wanting to stop. 

xxx

Oh CJ , 

I'm so sorry for you that you're feeling low, but bear in mind that you taking your blood thinners wasn't your fault, it was the fault of the treatment team. If only they had something as simple as a leaflet to hand out and that would overcome the human forgetfulness factor. As long as they don't forget to give you the leaflet of course! When I was neutropenic the first time I was taken to the side by my nurse and handed such a leaflet and she went through EVERY point on it. 

It's a shame that what happened to you cost time and money to each person involved, you included.

Having cancer is such a tough journey for all of us, each journey is different, keep travelling CJ and never give up hope.

Tvman xx

Oh

I can sense that the underlying message of your post is that you're losing hope and I hope I'm wrong about that. I don't know if I could go through what you have gone through and are going through. When you talk about your spinal pain that you're getting because of the growing tumour it resonates with me.

I hope that you receive some ray of hope from your oncologist today and also that you get home to be able to sleep in the comfort of your own bed. Enticing, yeah?

I hope you can overcome this next hurdle and then your mood will rise.

Honestly, when Joe Public talks about someone having cancer they have NO IDEA what you and others go through, not just in a month but year after year. I think you're the taliswoman of the group, Daloni

Tvman

Hi tvman

Thank you. For the first time I do feel truly overwhelmed. It’s the pain. The thought that has emerged as I lie here waiting for the doctors this morning is that I cannot go through chemo while this pain is uncontrolled. I’m not physically or mentally able to do it. I just can’t battle my way to and around the hospital each week. It’s not me being feeble. I mean it’s not possible. 

Tell me, how is it that you live with the pain you have? How do I do this?

Hi Daloni 

I am really sorry to hear about you pain and hope that the conversation with your oncologist  outlines something you feel is useful and raises your spirits. It must be hard when you feel your life is dominated by weekly chemo and you pain. Wherever i see your name on the forum I always smile . Even though you are going through a difficult time, a kinder more considerate person i could no think of.  For what its worth i send you my love .xx

Hi Daloni, 

Just wanted to let you know how sorry I am to read your post,  I'm only 4 months into this but you and others give me the strength to keep going even though I feel like , I hope you get the answers you want and get home soon.

Keep going stay strong sending good vibes

Xx

Hi 

I'm really so sorry to hear that you are struggling so much with your pain. I hope I can help you.

For me, my pain started in Aberdeen in July 2015 and within 7 months the staff and one person in particular at my doctor's surgery had arranged for me to borrow a wheelchair from the Red Cross until I got one from the NHS. 

When the sciatic pain started in July on holiday I realised it was bad so I phoned to get an appointment on my return. It was bad, I couldn't help my wife with the shopping because I could only walk for a few minutes before needing to sit down. How many seats can you see in a supermarket? None! I had to sit on fridges, freezers and displays. Even once on the end of the checkout where the items arrive for packing. 

Daloni, the wheelchair was my saviour, I could get places although because of lifelong elbow problems I was unable to travel without considerable effort when going around town because of footpath slopes. I didn't realise how difficult it is to get around and several footpaths are sloped greatly that I had to push one wheel only.

I picked up my own scooter at a Motability show in Belfast. I was just leaving and I passed a stand with a few motorised scooters. Within 15 minutes I was dismantling one to put it in my car boot. 

The scooter has been great for me, giving me the ability to get around everywhere, pain free. 

It's a different story for me working in the garden. From when I leave my front door to when I walk through the arch at the top of my front lawn I have to sit. As soon as I walk I have pain so I need to sit down when I arrive there, at my plot. 

How do I cope? I can't say it was easy, especially when I had a cancer diagnosis a few months earlier. People I know whom I haven't seen for a while understandably think my cancer has caused me to be in a wheelchair and their mouths hang open when I explain.

Back to the coping part. I expect pain almost constantly in my waking period when I'm not sitting. When I'm gardening in the plot, my pain begins and only halts when I sit, although not immediately. The pain tends to get more intense for a minute or so and then I feel it draining away. I constantly apologise to my wife because I have to stop, I really can't go any further because my spine feels as though it's about to break, I will faint or cry out with pain. I apologise and ask if she understands which she always does. I tell myself that this is the way life has to be, I can't do anything about it. I know I can't have an operation because I have been told by 3 different surgeons that an op isn't on the cards. 

I know I need to adapt to a different paínful life and sometimes there are advantages like 2 for 1 price for the theatre or a football game or some events, up to the to the top of the queue for the Empire State Building. That was great. Pain is a part of my life as is cancer. I could roll over and lie down or get on with life. You are an inspiration to me, no matter what, you get on with it and keep strong even when you feel you have had enough. That resolve is ever present, stiff upper lip and so on. Some of our fellow members are fantastic-not some, they all are. They come here, putting a toe in the water and by the end of the week they're giving support! How great is that?. 

Hope this helps Daloni.

Tvman xx

Hello daloni, this does make for depressing reading. I know you don't want to let the tumours have free rein and I appreciate the one on your spine is literally ruining your life. Is I'd possible that they can give you a couple of weeks off from the chemo and really go to town on your pain.

I know it's easier said than done but a little break would rejuvenate your spirit. Hoping for some relief for you.