25th October 2011 – chest xray and blood tests. All ok, not much to see on the xray as ever. Dad said that he’d been suffering with lower back ache this time and continued constipation. The Onc examined his back and felt tummy etc. said that because he has secondary bone cancer, it can press on the nerves around the bowels and bladder and he needs to watch out for incontinence and/or weakness in the legs, loss of control of the legs etc. and let them know straight away. He said they can organise for some radiotherapy to ease the pain. Chemo set again for Thursday. CT scan 5-6 weeks after the last chemo and then they’ll decide on the next course of treatment. All blood levels were fine. Still not aware of where the cancer is in the bone though and he didn’t say it was in the spine. He never says anything without you asking and doesn’t give much away. His mood was slightly different this time and dad seemed to think his handshake was firm as in a ‘goodbye’ but the nurse earlier said he was stressed as he was alone in clinic today and was stressed so that is probably why. Dad was smiling throughout the examination.....
On chemo day, dad rang saying his back had been particularly painful overnight and all water loss has stopped and he doesn’t have sensation there, was concerned about having the chemo. I rang the chemo nurses and explained and they suggested he see the Onc before the chemo just to make sure. Dad raised his concerns so it was decided it would be better to put in a stent and the quickest route would be by A&E. The Onc wrote a letter which we took down asking for a surgical review to take place. Admitted to emergency assessment ward. Moved to a bowel cancer ward the following day. Xray taken and shown that the bowel hasn’t completely closed but it had narrowed and there was a swelling behind the tumor which was causing the pain. The Registrar mentioned the scan shown spots of cancer on the spine and pelvis and these could be causing the pain or pressure on the nerves from the full bowel. Dad was put on a drip and no food or drink for 24 hours. Painkillers given and pain eased. Allowed to drink sips on Friday afternoon and allowed soup and ice cream on Saturday. Currently under observation in case of rupture.
Up to now we have an understanding with our Oncologist, he doesn't tell us anything we don't need to know and we don't ask. I'm happy with this arrangement, dad thinks he'll have his chemo and get better. Anyway when we're out of the world of our Oncologist, i have no contrl over what he is being told, hence the spine and pelvis cancer spots. Also the Oncs letter referred to Palliative care, which I knew, but dad didn't.
Dad's been making an effort to eat bits in the evening which is followed by terrible pain. We have learnt two things during his hospital stay, one is the pain in his spine is his bowel, not cancer and the amount of energy he's not got is unbelievable, so the 'old and knackered' feeling is definitely the chemo, and not the cancer.
I went to see him last night and he has lost even more weight, he said he nearly cried when he saw himself in the mirror after a shower, the wastage is now evident on his trunk, whereas before it was just his arms and legs. Someone had a go at me at work before I left so I was tearful before I arrived, I was quite and he put his arm around me and said I looked worried and asked what was wrong. Cue the tears, I explained about work and he said work is just that, work and such a small part of our life and he's right. I felt bad for getting upset because he probably thinks I'm more upset about work then him which is so not true. I desparately wanted to hug him and beg him not to die, not to leave me because I don't know what I'm going to do without him,he's always been such a positive influence in my life, always there with a hug and smile to get me through but of course I couldn't, it wouldn't be fair. Instead I held it in until I left and sobbed like a baby in my car, home and bed.
What I find so upsetting is how he is always smiling, don't get me wrong I don't want him sat there sobbing, but against it all he is so determined and positive it breaks my heart to pieces.
I'm sorry for the miserable post, I am struggling to hold back the tears today, I want today over, I want all this to go away, today I cannot cope. I hope for a better day tomorrow. xxx
