Brilliant to see family yesterday. Thanks to Gary for driving mum and dad. Not as smooth as it could have been. From my point of view it was great. I was on pretty good form as well so at least people know I am slowly getting better. Started to get new pain last night. The back of my throat feels unbelievably ouch…probably just repairing but had to take extra pain killers to deal with that. Thought it might have been the talking yesterday but have woken this morning with the same issue. Have had my meds and will see what happens. Food went down OK this morning which is new. I have had trouble keeping it down recently.
Back to the Doctor today. No longer anaemic and the doctor was pleased with the progress I have made. Feel as if I am making progress. Plenty of sleeps still needed during the day. Have not had good nights recently and have my fingers crossed for tonight. My mum, dad and brother are coming to visit tomorrow and I am a bit excited. I hope that I can stay awake for long enough to make their journey a good one. I do want to show off me getting a bit better now.
The one aspect that I really want to go soon is the mucositis. The phlegm is interminable and makes one sick. It makes eating and drinking more difficult. I am really pushing to be back drinking with a week to a week and a half. Even starting wet food again. This will depend on the recovery from spitty bits.
Lot more perky all around. Thanks for continued support – still a way to go!
Not sure if I would carry this on but based upon the challenges that I still face every day I think I need to get it out there. Hospitalised at the end of the treatment where my body was telling me that it was close to taking no more. The thought of facing the journey to cause more pain was not going to happen. I rest my case with hospitals and their potential for individual care on this visit. Soulless, dull, numbing, noisy. overcrowded, under staffed…..
Got home and then had a Sunday before going back to the consultant again. Over the past week or so the energy that I have to do things has increased slightly although there are still days when I need to sleep lots and no days yet with no naps. I have been able to spend more time in the company of the children downstairs although not a massive amount. This is very encouraging. I have needed to be put on an evening feeding regime with a pump as I am finding it a difficulty to eat all the calories I need. Mainly due to being sick so often. It has definitely helped,
The biggest problem is the mucus which has the effect of disrupting my sleep and make me sick. It is this symptom of the treatments that I want gone. No-one seems quite sure when it will end but I thought they said improvements after 10 days-ish..well we are there today so I am expecting. Hope you are all well and looking forward to a good Christmas.
Dear all, This is Alison. Today Mark was admitted to hospital for the rest of the week to finish his treatment. He cannot control his sickness and the travel is becoming very difficult. His PEG has also been causing problems. Dr Johnson – who for some reason we all call Dr Dan (to be fair his first name, not just some random name) and who I think I could easily have been teaching A Level to a few years ago – says that it is remarkable that he has got this far without being admitted. It has been a difficult week so far and not the start we were expecting. However, discussions with the consultant and registrar today were constructive. My Mum has been over for the last 2 days holding fort and giving emotional support – thank you. One place Mark and I feel very safe in at the hospital is the Helen Rollason centre which offers complimentary therapies and has peaceful music and a nice fountain etc. The BBC filmed there 6 weeks ago at the start of Mark’s treatment and it was just featured on the One Show. I’m not one for fundraising, but I have been happy to buy my Christmas cards from them this year and hope in the future I can give them something back, along with Macmillan who are also fantastic. In one sense it is unbelievable that there are only two days to go until active treatment is over, but Mark will need to recuperate and build himself up after and we will be visiting the hospital frequently. Hopefully as he gets stronger his blogs will become more frequent again.
Have not been in any place to write much recently. Most of my energy has been devoted to trying to stay afloat. Really getting to the tough end of this treatment. Finished my chemo, which is wonderful. It has been tough and I still feel sick from the treatment on Thursday. Lots of vomiting occurring. The major issue now is mucositis…or something like that. My mouth is ripped apart and this has led to phlegm vomiting about every hour but no hard and fast rule. 4 boxes of tissues in 48 hours is good for their business. 5 days of radiotherapy to go and then the trip back to health. By all accounts it will probably take about 2 weeks for things to start turning around. Not sure how quick the recovery but it will be good not to be so reliant on morphine for pain relief.
Worry for the week ahead as all people on the treatment that I have got to know have had to be hospitalised due to their associated issues with radiotherapy. Got quite a sunburn on chest and neck and have to keep that under control. All told it is all pretty damn crappy. Thank you to those who write messages, it is greatly appreciated and I will cling to any old information. Anything to take my mind away from such a low point. End of weekend now and with the help of Alison and the boys I have rested and kept up with all treatments I needed. I start the final week as best I can. Fingers crossed that this week goes quickly.
Shame I missed carol services as they are so special at school – to all a Merry Christmas and I am definitely looking forward to a brand New Year….no drinks at midnight this year though…I finally have an excuse to be in bed before 12.
After such a decent day I suppose it was inevitable that today would be tough. Sick from start to finish. Lots of vomiting on the agenda but never quite getting there. Knackered beyond belief and therefore slept enormously, unfortunately highly uncomfortably. Looking for a bit of relax overnight but not sure if I can get it.
Short today but much how I feel.
Had a steady weekend where I thought about looking after myself entirely. Kept all the medication on time and slept/rested for as long as I could. Starting to pick up on the food intake which is really helping, No longer do I have the hunger yelping in my stomach. The consequence is more ease in many other aspects of the day to day body running. I felt 10x better this morning that I did last Monday. It was commented on by all that saw me at the hospital today – I suggested it was amazing what good care one can give oneself with the knowledge and tools rather than relying on overworked ward staff. It is not a surprise to me having briefly visited the wards that people do get lost in the system and older ladies and gents do less well as they can be less pushy. Believe me this is no slight on the ward staff who I feel do work very hard – some people just need more time than others – and there are not enough people to cope.
Radiotherapy done and a very sore mouth and throat as always now. The skin on my neck is starting to burn and I will not be surprised if this becomes blistered/scratches/stretched by the end of the week. Will continue the moisturising regime to stop this if possible. Swallowing liquid is just about still possible but is harder every day. If I can get through the Thursday I will be happy – bought some potato and leak soup to try. Alison gave me my Christmas jumper today – one I have asked for since November – bit of a scratchy neck though as woollen so might keep for a better time.
Couple of pictures of stones and baldy me: