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:
Never thought that I would get this far. Feel a lot more chipper today as I have been able to keep on top of the pain. It is so important to stagger the medicines. The shorter trip time to hospital helped as I was only 45 minutes late being called in for treatment today. Each radiotherapy is hurting the throat now and therefore this will be the issue for the next two weeks. Only ten radiotherapy sessions to go – they are called fractions bizarrely (see earlier post). 1 more chemotherapy. I feel like I have reached the back straight of this race. I will conserve energy over the weekend and hope that England rugby and Southampton football get wins.
Ian I could not resist getting you something that I found on line. I have made an error though and the Bill of Sale is being sent to your address and I am getting the goods. It arrives on the 1st so I will get Ali to swap the parts. Sorry for being a doof. If a Bill of Sale arrives addressed to Rev Mogs then that is the swap.
Challenge for next two weeks is to lose no more weight. They might need to stop if I do as the mask is fitting less well. I shall need to step up the feeding. Trying hard.
Only one more Chemo session to go after today. That really is something to look forward to. The nurses are lovely but they wipe me out of energy and verve. Long day with leaving for North Mid around 0900 and getting back through rush hour to arrive home just after 6pm, Could have been worse but for a tired and in pain chap it was tough.
Thank you for continued wishes of good health, luck and concern. All words greatly appreciated. I really like knowing what is going on in the world. It gives me something to dream about other then just treatment. Bit stuck with the reading, listening and watching as it takes too much effort. I do a good line of staring into space for up to three hours hoping I can get to sleep through the pain. Bill thanks for the book and I enjoyed reading your card Laura – and thank you for the gift I will use when pulling through all of this. After tomorrow’s radiotherapy we start the traditional countdown from 10….
When thinking of how to describe myself at the moment I could only think of a washing line. If you imagine I have been hung up to dry at the beginning of this process. All that was me, was inside, but through the rigours of what has happened – the highs and lows- slowly all that was Mark has leeched out. There are still some remnants there and without the awsomeness of the wife and friends there would be a lot less. Part of the process of recovery is going to recapture what Mark Self was and then put it back into the washed up battered shell. We all know when things are opened you cannot quite get it all back where it once was. With any luck my new style of packing will make things better than they were. If I can just make it through the every day, every hour, every second pain, the relentless need for travel and treatment, the waiting, the sheer challenge of being then I know it can all be mended again. The hope of better things in the future is what I must cling to. Enough of being a maudlin so and so. Be well.
They have brought out the big guns now. I am on strong,controlled, painkillers and boy do I need it. With still so much to go I wonder how I will cope. Finding eating and drinking enough really hard through the tube. Sleeping is tough because of the state of my mouth and the icky mucus. I will just have to hunker down and look for inspiration where I can. Not much from the Saints last night.
Rachael is my lift to the hospital today. I hope I can be some company. Will need to take various foods and drugs so that I do not get low.
This is the hardest thing I have ever had to do. It must not break me.