World Cancer Day 2022

 World Cancer Day 2022

I’ve gradually been feeling more and more unwell. My birthday is 26th Jan. I woke early that day. Some of you will wonder if that’s because I’m a big kid and I was excited. That maybe true but that wasn’t the reason why my body woke me that day. Sadly at 5.30am I woke to be violently sick. Up until recently, I’ve always been a considerate puker! Lol. These days I’m not strong enough or speedy enough to get to the bathroom. I also can’t go down on my knees over the bowl so my aim can be off with these huge projectile vomits. My poor long suffering partner was woken by the sound of a waterfall hitting the sick bowl I keep beside the bed. She was worried I’d overflow it and went and got the bin after rapidly chucking the contents in the bath. Even I was impressed by this huge vomit. I was like a scene from Alien or the Exorcist. Needless to say it took it out of me so I slept most of the morning. Not the best start to my birthday. 

However later that day I felt well enough to be up and dressed and really enjoyed raiding the sales online and spending some birthday money. I got a really nice and unusual hoody. I also got some jeans and some really lovely PJ’s. One of the areas I’m lucky in many respects in, is that I have small feet. I’m a 2 or3 and so buy my shoes from the children’s department. I often get a good price because of this but in the sales is even better. I managed to bag myself a lovely pair of Timberlands costing all of £30 and some Uggs for £65. Lucky me eh?  I also saw my family briefly later that day so all in all a good birthday despite how it started.

The same thing happened 4 days later. I woke in the early morning being sick. The difference was a carried on being sick all day in-between sleeping. I felt really rough. It was my delightful nieces birthday and I couldn’t even contact her on her special da as I felt so rough. I then spiked a temperature of 38.7 and my oxygen saturation levels were only 83 at one point. Thats very worrying. I know I’ve been short of breath lately but that was very low. I contacted my team but said that as I had an appointment the next day I would leave it till then. 

You can guess what happened next. I ended up, sadly, being admitted. I was gutted. I’ve tried so hard to stay out of hospital. I knew it was the right thing though because I felt so awful. The working theory is an infection, maybe pneumonia. Im infection markers were 300 and something apparently. Normal range is below 5! They started me on the usual cocktail of heavy duty IV antibiotics as well as oral ones. I’ve been a bit washed out and one of the nights I felt so dreadful that I would have happily asked if they could’ve put me to sleep. Since that bad night, things have improved, thankfully.I’ve got one more day of the IV antibiotics and then they will review to decide if I can come home.

One of the things I was told was that they would be discussing me in the MDT (multi disciplinal team) meeting. I decided it was time I tried something slightly different so I sent some of the team my symptoms broken down into specialisms plus the ad hoc stuff. The meeting was the next day so I sent it off in the hope that me responding differently might help them work out what’s what. This is part of that email

Gastric symptoms

Regular large vomits and lack of food moving through

Nausea

Indigestion and heart burn plus gripes in my stomach

Reflux and waking in night coughing badly with acid stinging my throat

I had my PEG J removed in October plus some biopsies and polyps removal as well as a bravo clip fitted. I’ve not had the results. 

Lack of appetite. Food feels different in my dry mouth and is sometimes getting stuck. 

Transient or occasional gastroparesis. 

occasional huge vomits. 

Possible GvHD symptoms

Dry skin

Very dry mouth

Dry eyes

Very weak muscles

Pains in joints 

Occasional mouth ulcers

Nausea and lower tummy pain

Neurological issues (can GvHD affect the brain?)

Skin bruises easily(?GvHD and long term steroids)

Neurology symptoms

Clumsy

Loss of fine dexterity

Fingers not as sensitive to what’s being touched

Numbness in hands when standing and down mainly right arm. Arm goes cold momentarily 

Legs fee like they will give way at the same time I get this weird whooshing sensation and my hearing seems to go in and out.

Headaches often in the morning

Stiff and sore neck and shoulders

Hard to find some words. Could be since TIA.

Respiratory Symptoms

Short of breath which is very bad on exertion. 

Wheeze from time to time. 

Pitting oedema which has improved with diuretics 

Bending makes me breathless

Lying down makes me wheeze a bit

Ad hoc

Myopathy ? Steroid related

Brittle cracking teeth

Osteoporosis/penia caused some small back and neck fractures 

Headache most mornings

Cold hands and feet

Broken, brittle and peeling fingernails

Counts dropping seemingly after I’m showing signs of infection

The next day I saw Austin. He is one of the seniors now and is world renown for his amazing work with MDS. We go back many years and he knows me well. I only usually see him to exchange pleasantries in passing these days as I’m looked after by the post bone marrow transplant team. He came into my room with his eager group of young doctors. I think these younger ones were surprised by the banter between Austin and myself and the fact that I had emailed him the night before. There are perks to being a long term patient. He `said he was going to look at things with a fresh pair of eyes as he hasn’t seen me medically for 5 years. He wants to organise a heart scan and a brain MRI. I know him and he will ponder and come up with some other ideas. I know with him, Victoria and the fantastic team behind them that I’m in good hands.

The care I’ve received from the impressive and caring staff on the Derek Mitchel Unit has been to its usual high standard. There are many young new staff. One looked after me for the last couple of days and considering how new she is to her profession and career path, she was spot on. She was calm, caring and compassionate. She was also professional and knowledgeable. One of the good skills to have as a nurse in general, but especially with pattens like me is to be observant. She noticed that I was out of puff and checked it out with mE. She also had a student with her and was very good at passing on her knowledge to him as well as helping him to develop the skills and knowledge he needs. With youngsters like this coming through the NHS is in safe hands. The same can’t be said for our present Government. I won’t go into it now as its not good for my blood pressure surface to say. The NHS saved Boris Johnsons life. I hope her remembers that when he is slowly selling it off and privatising bits under our noses!

The blood, phosphate, IVIG, IV antibiotics and care I’ve had have all made me feel back on a level. I’m mightily relieved this is so because unusually I agreed to take a funeral recently and it’s on Tuesday. The team hope to get me out by the weekend. They are aware of the service. Eileen who would have been 90 next month was a former parishioner. We both had an impish sense of humour and she developed a real soft spot for me. I know I can do good funerals and I wouldn’t want it any other way but it’s so challenging sometimes when your body is letting you down. I don’t like that element of doubt. I hate letting people down. 

This is one of the hard things about having cancer and living with the consequences of treatment. I should be able to commit to things and not have an anxious time wondering if I’m going to be alright. One year I remember I was in hospital and they gave me day release to go and take a funeral. I know, where they can. They will work with me. I really appreciate that. Any way looks like I’ll be ok for sending Eileen home and honouring her long and varied life for her family.

As it’s World Cancer Day, I am uploading photos of the struggle. If you don’t like bruises etc then don’t look.  I want to give a big shout out to all my family and friends and anyone coping or surviving this awful illness. Thanks to all the medics and scientists making huge leaps forward and all who care enough to try and make our lives better. It’s appreciated