End of week 4

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.

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Washing line

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.

Morphine

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.

What a weekend

This weekend has been a testament to the unbelievable person my wife is. She has single handedly guided all of us through our lives whilst doing everything in the world. I know she liked seeing her mum and dad on Saturday. I was appreciative of their company and help when needed.

Thankfully the feeding tube has enabled me to get calories inside and therefore I feel a bit more human in the brain. I continue to be extremely tired,,,only having ventured downstairs once today. There was a major panic and phone calls this morning when my tube got blocked for an hour or so. As I took my medication through it, then granules got stuck. The nurse asked which medicine, we told her, and she said that was one that always got stuck! Will no-one mention this to the manufacturer or indeed PEG users so that they are pre-warned. After laying on my back with a warm flannel rapped around the tube and a small syringe to increase pressure the dam was burst….queue song and bouncing bombs. My mouth continues to be more wrecked and is nothing more than a bead door flapping around my mouth. I worked hard to try and eat normally today and managed half a weetabix (mulched) and some carrot and coriander soup – tasted the coriander but by goodness the mouth tingled. I think it was worth it.

Managed three feeds and various painkillers. Just has one of the stronger ones so feel quite weeeee at the moment. Not looking forward to another trip back to hospital tomorrow but Ali is with me and she makes me feel so much safer. I know she can and does deal with everything. What a lucky boy I am. From tomorrow each treatment is one less to go—we are on a countdown…..tomorrow is 15.

Out of hospital

After a typically appalling stay at the hospital I am at home. Medication and eating was tough whilst on the ward. I collapsed on the Friday night with teams of docs and nurses running to my aid. Real problems with my eating and drinking. Hopefully all sorted out now with my tube. Been fed through it today and whist it feels very strange it takes the pressure off trying to get so many calories and liquid through my mouth. It takes about 30 mins to get all the medicines, water and feed through. For the first time I am not wolfing down my food.

All a little bit sorry for the situation in which I find myself. My mouth feels waxy and furry and does not seem, even with the wash, to become fresh. Night time is giving me about three hours sleep before dryness makes me need to get up for washes in the mouth. At least it also numbs the pain of the ulcers and burned mouth. At least I am now half way through. Every treatment that I now have is one less than I have already done. We are on the last lap….need to kick on.

Might need help with lifts next week guys so please volunteer to Ali! Cheers to all.

The Wife

I am guest blogging tonight as Mark is staying in hospital overnight. He says he trusts me so here goes……

Today was his procedure to fit a PEG so that he can take in nutrition when/if his mouth gets too sore. As his mouth has gone from fine to very sore in 48 hours, this seems a realistic idea – but I think he would rather he didn’t have to have one.

Yesterday we realised how much of a team there is in oncology when Mark was helped by Dr’s, the nutritionist, our lovely MacMillan nurse Margaret and the wonderful chemo nurse who looks after, in her words, ‘my Mark’ (also called Margaret I think).

Today I was humbled by Beverly who prepped Mark for his procedure. She was friendly. and funny, and realistic, and positive. She was helped by a student nurse called Faith who had to ask Mark lots of questions – many of them were obvious, but we were rather thrown when she asked Mark if he had any pets at home. However, I think Faith was more thrown when we said, yes a cat and 2 guinea pigs! I don’t think she had encountered that reply before and we all had to work out how to spell ‘guinea’!

I won’t go in to much detail about him having the PEG fitted – he can do that if he chooses, but needless to say it wasn’t pleasant – and I wasn’t even there. Anything that involves sedation is problematic for Mark, but he seemed OK after – if a little sore. He may feel more sore once the pain relief wears off. Writing ‘a little sore’ reminds me of those articles which list typical British understatements such as ‘It’s a bit nippy’ (It’s below freezing and I may get hypothermia), ‘It’s no bother’ (this is the most inconvenient thing I’ve ever been asked to do)………..

It feels strange that Mark is in hospital and I cannot pop over to see him this evening for half an hour as it’s so far away, although I am beginning to remember how to drive ‘London style’, something I had to do daily whilst teacher training. Even Mark complimented me on my driving this morning. Anyone who has ever had the pleasure of Mark as a passenger in a car will know that this is possibly the highest praise that he can give.

Whilst on the subject of praise, I will take the opportunity to end on a slushy note, and let everyone know how incredibly proud I am of the way that Mark is approaching what at times must be overwhelming. I love him very much.

Mark – I hope this meets with your approval. Sleep tight, love from me and the boys xxxxxxx

Chemotherapy number 3 finished

All done for another day. Chemo this morning from 1000 and then radiotherapy. Had a really long listen to my MacMillan nurse, dietition and doctor dan as they were a bit worried. The pain in my mouth has got to be too bad to eat anything meaningful. They told me off for trying to be too tough and instead let them know what painkillers I really needed. I did not know/ or think I was being tough but just like my dad I do not like to make a fuss. Hopefully new regime of mouthwashes, painkillers, creams, gels. lotions will allow me greater amounts of sleep and make it possible to get food past the burned mouth.

I started to think of some more things I would like to eat when I can again – habas on olive oiled oiled bread sounds good…probably best in the sun.

Up early tomorrow to get into hospital for PEG fitting. Need to have breakfast at 0430 so that I do not contravene nil by mouth instructions. Will be taught to feed and drink through the stomach tube which¬†will undoubtedly help with hydration which is also tough going. Simple things that one takes for granted every day are so hard at the moment. The pain will apparently continue to increase right up until the end of week 6 – it is expected that I will be on some kind of morphine by the end. It is expected that how I feel now will be my pain level in week 9….so this is what Christmas will be like….no turkey! Been given protein shakes on prescription and they will be the bulk of my food for the next umpteen weeks.

The amount of medicine is growing. Here is the picture of my current medicine box on my bedside table:

https://www.dropbox.com/sc/m5dhxgy6vplx5j8/AABbhJbHyzEWpdKXA8vUDuzSa

It does not include my anti sickness and steroids yet!