Rebel Rev bigs up the NHS

For those that like to keep up with me here is the latest. 

I had some lovely surprise visits from Bev and Janet Nye as well as Tina Fowler who had been to clinic. It was so nice to see them. Us MDS patients are pretty good at supporting each other. Thank you for taking the time to catch up. 

I’m still not maintaining the feed and as a result am continuously being topped up with various electrolytes. They had hoped to wean the TPN down further but this morning after a long debate with the various specialists they have decided to slow the feed down and increase the TPN. Sigh. There is no chance of me getting out of here while I still need TPN support. 

The last lot of blood I had hasn’t lasted long and they have needed to give me another top up. Thank you to the amazing person who donated this little bag of life to me. Without you being willing to have a few moments of discomfort, I would not survive. Your generous gift is gladly received and very much appreciated. 

The nurses and doctors and allied healthcare professionals are working really hard to get me back on an even keel. Their kindness and compassion despite the daily challenges is outstanding. While my night nurse was giving me my last lot of medication last night and also hanging a new bag of TPN, he got called to deal with an emergency in the room next door. Between 10 and 2am  staff worked tirelessly to save their patient. The stream of doctors, nurses, radiographer, and probably others was endless  going past my door. In a crisis you know you are in safe hands with our NHS. Another nurse came from an adjoining ward to finish my medication at 00.45am. It’s good the way the team pulls together at times like that and despite the damage that austerity has done, nurses find their way round the system. You have my respect. 

Of course not everything is smooth sailing when you are an in patient. Today I’ve been told that because they have used my ECP line for TPN that it now can’t be used for ECP. Apparently TPN has to be given on a dedicated lumen that cant be shared with anything else because of the infection risk. They are now scratching their heads as to how they are going to sort it. I guess for me it means I may have to put up with being stabbed several times until they get a cannula that will work. 

The other irritation is that despite giving them 2 separate samples in different weeks they still need to test for CDif before I can be finally given some medicine to slow my apparently badly inflamed gut. They have tested for loads of other stuff including norovirus but forgot this one. Let’s hope they get the results soon. 

Despite these challenges I still think the NHS is one of the greatest achievements that Britain has ever created. We need to work hard to protect it and support the amazing individuals that work in it. I’m not saying the system can’t be improved in places. All things need to be reviewed at times but for the women and men that give their time, talents and professionalism to keep people like me alive and to try and give me back a bit a quality of life - I salute you all. Thank you doesn’t seem to cut it but you know it comes from a very grateful heart. Rebel

Rebel Rev hates bile

Well I might need to get my thermals out. My room is below 30 for the first time in 3 weeks. 

Sorry if this is too much information but you know you’re in trouble when you’re asked for a stool sample and given a bed pan and a syringe in order to transfer some to the specimen bottle. Yuck! 

I’m now on a 10 hour break to give my body chance to recover. Still connected to my TPN and Eric though. 

Sadly the same thing that happened yesterday occurred again today. This time I started being sick while the nurse was putting medication in my NJ tube. It’s awful because my stomach is empty apart from bile and it takes such an effort to be sick with very little to show for it. This happened 3 times before I was able to settle and get a bit more sleep. 

This is a weird admission. I came in feeling relatively ok just a bit weak. After 3 weeks of treatment I feel dreadful at times. It’s like I’m going backwards. No point stressing over the weekend as nothing much happens in hospitals during weekends. Let’s see what Monday brings and hopefully we can develop a new plan that improves the situation. 

I hope the better temperature and nice weather gives you an opportunity to enjoy the weekend. Have some fun for me. Xx

Rebel Rev is keeping her sense of humour

Hi everyone,

I hope you are well and coping with the heat. My hospital room is nice and toasty at 31c. I keep the light off and have two fans going continuously. It is very hard sitting on a plastic chair and sleeping on a rubber mattress. Thank goodness my sister Dawn got me a chill pillow that I keep in the fridge till I settle at night. It stays cool for about 40 mins. Bliss. 

Yesterday I had a dreadful day. I couldn’t get off the loo and I ended up with a blinding headache so much so that I couldn’t even speak to poor Maggie when she came. The night nurse, who knows me, took one look at me and took some action. She knew it’s not in my nature to lie in bed and not talk. She managed to get some IV meds into me so that I could eventually settle and sleep. 

My day today started at 6am when my lovely night nurse gave me some medicine down my NJ tube as it’s become too hard for me to swallow all those tablets. I went back to sleep and then 20 mins later woke up to throw up. There’s nothing in my stomach so I’m just puking bile. It’s awful and really stings your throat. Fortunately the NJ tube places the medicine lower down and bypasses my stomach so at least I have a chance to absorb some of it. 

I’m still on TPN. They are slowly weaning that down and increasing the NJ feed. The problem is I’m not tolerating the feed well and when that’s connected is when I have to run to the loo. I can’t go home on TPN but I can go home with the NJ feeds so we have to pray that my system starts absorbing some of the nutrients. 

One of the problems of it going through me so quickly is I’m still having to have everything replaced. I’ve had a top up of magnesium which is awful and makes you feel really hot and rough and I also needed potassium. My albumin is low so I’ve got a lot of fluid retention. 

They are still not sure when I can go home and are looking at other ways to stabilise the situation. 

One of the hardest things is being permanently attached to Eric the cyclops. Image this scenario. It’s 3am. You wake up and know you have a very short time to get to the loo before things get messy. You want to make a dash for it. The problem is you have to unplug 3 pumps and drag Eric with you avoiding the table and the fan. Oh my days there have been some near misses.  With that lovely thought in mind I shall leave you to the refreshing rain and thunder. Hope you have a lovely weekend. 

Rebel Rev takes on pipework

Well it’s been a day and a half. Good grief. The day started with a visit from the lovely Sam, my haematologist. He told me I needed a blood transfusion. I started to feel extremely sick while I was chatting to him and ended up having to puke in a bowl. This lovely doctor patted my back and got me tissues. He will go far. He has such a brilliant bedside manner. 

I had my blood. Thank you to the kind stranger who saved my life. Then I was whisked off in an ambulance with no aircon to go to Guys for my ECP. During my session I got chilly. I must be the only person in the UK to have needed a blanket today. 

I got back to the ward around 6pm and was told that they were very pleased I was back as my calcium was dangerously low. They said the levels were so bad they needed to do an ECG which is a trace of your heart. They took some more blood too. When they came back they said it wasn’t deadly low it was in fact just low. 

I am now hooked up to Eric the cyclops and I have a 24 hour TPN bag up and an overnight NJ feed and some calcium. How on earth am I gonna sleep with all these pipes and tubes. Also how am I going get to the loo? I’ll have to unplug 2 or 3 plugs first. Let’s hope I have no emergencies in the night. 

Finally my lovely night nurse couldn’t stand the heat in my room. It’s a constant 28 or 29 degrees. She went and got this lovely upright fan. It’s a bit noisy but once my hearing aids are out I won’t hear it. 

I was very sorry to miss a visit from Mike Ziolek but had a lovely evening reading all the cards and letters that BBC Radio Kent listeners have sent in in response to my weekly audio diary. 

Thank you everyone for your thoughts and prayers, messages and visits. It helps to make a difficult time a little more bearable. 

Rebel Rev loves the NHS

Dear All,

I can’t believe I’m still in this hot little hospital room. I’ve been stuck here for nearly 2 weeks during all this lovely weather. Since me and Eric the cyclops(my drip and pump stand) have been attached, the last 72hrs, I haven’t been able to go outside. 

The plan in to try and sedate me again Monday lunchtime. The problem is the protocol for sedation for this procedure dictates that the maximum amount of medazolam you can have is 5mgs. When I’ve needed sedation previously for other things they have had to give me between 10 and 20mgs of medazolam. Fingers crossed that they are brave enough to step outside their protocol and treat the individual before them. 

Despite the challenges the TPN is doing its stuff and I’m steadily putting weight back on. Appetite is still poor but maybe slightly improved. My poor legs and feet keep swelling and because Eric works all night as well as all day I ended up getting up to pee every 2 hours. That’s so unusual for me. 

The staff on this ward are lovely. There’s only been one person who let them down and she was an agency nurse who obviously didn’t want to work. The rest of them work their socks off. From the ward hostess to the cleaners as well as the nurses and doctors , all of them are dedicated hard working professional friendly people. It’s just such a shame that staffing levels can’t be maintained and this agency nurse really let the side down. Other bank and agency staff have been great. I’m very grateful for the care and compassion that is shown to me. It makes a difficult time that bit easier. Thank you. 

Where ever you are and what ever you’re doing have a lovely weekend and get up to some mischief for me. 

Rebel Rev has a liquid lunch

Evening everyone,

Hope you are well tonight and enjoying life. 

Eric the cyclops is very hungry tonight. Look at the big bag he’s got. Apparently it doesn’t like sunlight so has to be covered. It’s called TPN and is a way of feeding me and getting some calories in. They can’t do the camera test because they can’t safely sedate me. They have decided to take the slightly risky choice to feed me through my line so this is all going directly into my bloodstream. TPN through a line carries a higher risk of infection in those of us that are immunocompromised. It can also be hard for the liver to break everything down. They feel they can’t leave it any longer though because my body is empty of electrolytes and nourishment. 

They also tried to start me on a special diet. The problem is I don’t eat anything much on the menu. The junior doc is as so lovely. She said it was more important that I ate anything. She offered to go to the shop for me. How kind is that. 

I’ve been told I’m likely to be in for another week while they try and settle things down and get me back on an even keel. 

I think come the weekend I’ll be tying the sheets together and climbing out the window. Lol. 

I have a fan in my room tonight so at least I’m cool. Let’s hope for a better night and that I don’t wake up throwing up. 

Wherever you are and whatever you are doing please make sure you tell those closest to you how much you love and appreciate them. I couldn’t do this without my good friends and family. I’m indebted to you and love you lots. 

Right let’s kick this nonsense up the bum as my friend Dave would say and get on with it. 

Rebel Rev feels for the teenagers

It’s too hot again. Oh my days. I put the Tele on and there was a really interesting programme about teenagers with cancer. I can’t imagine what it must be like to go through all this when you’ve got all that teenage angst to deal with too.

What really struck me was the different approaches to having cancer on a teenage ward. The kids have games, DVDs, music therapy, famous visitors, complimentary therapy, trips out, residential conferences called “don’t lose your sense of tumour” Of course most of this is funded by Clic Sargent, Teenage Cancer Trust and Macmillan.

Just think how much better it would be if some of those things were included on the adult wards? I really need something to do during these long and isolating days. I am more than the sum of my physical well being. I have spiritual and emotional needs and above all I need fun and a little bit of mischief. Oh well I can dream.

Let’s hope I hit the land of nod soon or they will be taking my 2 am ob’s and I’ll still be awake. As long as I’m asleep by the 6am ob’s that would be worse I suppose.

Right I will switch off this blue light and listen to the radio. Night peeps.

Feeling hot hot hot!

Wow it is so hot laying on this plastic mattress. The plastic chair isn’t much better either. Sleep seems a long way off. I’m sure it will catch up with me. 

Well I’ve been in hospital a week now. Unbelievably nothing much has changed. My medication has been tweaked but it’s not improved things. I’m still losing weight and being sick and running to the loo at times. Yuck! 

I was taken to theatre on Friday to have 2 tubes put down and a biopsy taken. Sadly they couldn’t sedate me. I did warn them that I’m resistant. Ive taken too much medication over the years and it builds up a tolerance. I’m sure they look at me and think “oh she’s only little this won’t take much” and then to their surprise I’m still wide awake. 

I’ve been told by the night nurse they are going to try again tomorrow. This means I’m now “Nil By Mouth” I hope they have more success. I’m going a bit stir crazy. This has been going on for months and I don’t feel as ill as I normally do when admitted. I’m just a bit fragile. I was taken out for an ice cream by my long suffering partner and our daughter. It was great to get out, even in Camberwell. Lol. 

If you are the praying type please pray for a successful time in theatre tomorrow and if praying ain’t your thing I’ll take lots of positive vibes. 

Rebel Rev is back in hospital

One of the biggest challenges in life is to keep a sense of humour when all around you there seems to be difficulties,  stresses and strains. 

I was readmitted to hospital on Monday. The main reason for this is because I am not maintaining my weight despite my best efforts. I also have this hot spot that showed on the PET scan in my stomach that needs to be biopsied. 

Luckily for me a bed became available for me on my old ward and even more strangely I’m back in the side room where I spent so many weeks when I had my transplant. 

The team looking after me have decided I need fattening up. They want me to have over night feeds. This means having an NG tube put in place. Yuck! It was too late by the time I was settled on Monday to achieve this. The day staff were then very busy on Tues and then I had to go with patient transport to Guys Cancer Centre for my ECP. 

When the driver arrived to pick me up he was asking the nurses what department between them all they were saying it’s the 8th floor at Guys. I kept trying to say they were wrong. In the end I had to really assertively say to the driver “I know where I’m going I’ve done it every 2 weeks for the last 8 months.” My tip to professionals in this situation is please don’t treat patients like imbeciles. We do have minds of our own and I usually juggle my various hospital appointments very well and turn up at the right place at the right time. The driver asked me if I wanted to sit in the chair he had brought. I explained we would be faster that way as I walk very slowly. He snapped open the chair without saying a word. Between the time we set off from Kings and when we arrived at Guys the driver was silent apart from once to apologise to me for hitting a big bump and then it was only “sorry” I was glad to get out of the ambulance. He was a right misery and not a shining example of his profession. 

All the patient transport services have been privatised. Privatisation doesn’t necessarily mean better though. It does mean share holders will want their cut so profit margins become the main priority.

I had my ECP treatment and it was one of those weeks where the machine kept alarming and it was frustrating. It’s all probably connected to me not being that well. I was finally done by 6.45pm and asked to wait in the downstairs lobby for the return transport. After 40 mins I tried to chase it up but nobody answered the patient transport number. I eventually rang the ward. They said they had been chasing and were assured someone was on the way. Well to cut a long story short. The cancer centre was meant to shut at 8pm. Just before 9pm I had had enough and walked to Borough High St and hailed a taxi. I had to pay £18 to get back to Kings. By now I was tired, hungry, cold and in pain. To rub salt in the wound I also missed the football semifinal between France and Belgium. 

Once back in my room the staff were lovely and very apologetic. They got the guy that works in kitchen to get me something to eat. The only thing he could offer was steamed fish fingers, chips, and broccoli. It was gross. The nurse looking after me told me that she wanted to place the NG tube as I was written up for an overnight feed. 

At midnight they came to give it a go. One nurse who was being supervised, tried both nostrils. Then a more senior nurse gave it a go. I ended up being sick all over the bed and on myself too. It’s embarrassing. I always hit the loo with my vomit and haven’t puked down myself since I was a child. I bet the nurses wished they’d remembered the sick bowls. 

At 1 am the bed and me were stripped and washed and I finally settled down for the night. At 6.30am the same nurse that didn’t succeed wanted to try again. I said no and I wasn’t a morning person. 

The tray with the equipment on it is still in my room ominously staring at me from the corner. They say they want to try again this afternoon. I’m not sure I can tolerate it. Any suggestions people?

Most of the staff on this ward are lovely. They work above and beyond the call of duty. I’ve been here since Monday afternoon and every shift they have been short staffed. They do their best but there are only so many hours in the day. I really feel for them. People are quick to complain and slow to compliment. As much as I am complaining about the awful situation with the patient transport fiasco, I am also bigging up the nurses, drs and support staff who are dedicated to their patients and make the system work. Everyone on the ward from the person making the tea to the bed manager was aware of my plight last night and apologised for it. It wasn’t for them to say sorry but I appreciated it and this post is in testament to their dedication, kindness and compassion. 

So the next few days are going to be a challenge. I need to dig deep and find some inner resources. For those of you who have been worrying, I’m in a side room and have a TV to watch the football tonight. C’mon England.  

Where ever you are and whatever stage you are at, I hope you find some light in the darkness and a rainbow in every storm.