Wednesday 31 January 2018

Poor old Rebel Rev deals with more post transplant problems

Well this weeks clinic appointment was a real humdinger. 

1. It seems I’m growing more anaemic so I’ve been started on epo injections. Apparently my natural epo levels are so low to be almost not present. It’s a hormone secreted by the kidneys which tells stem cells to become red cells. 

2. My neutrophils are raised and my chest is wheezy so the doctor thinks I may have a secondary bacterial infection caused by having RSV. He has put me on extra antibiotics on top of the extra antivirals. He also arranged another lung function test. If this shows a further reduction in lung capacity then I will have to take more steroids. FFS! Let’s hope it doesn’t come to that. 

3. My immunoglobulin levels are low so I have to have an IVIG infusion over a few hours on Friday after I’ve had ECP. This could be a post transplant problem or because of infection. 

4. My B12 is still low. I have to have 2 injections a week for a while, then it drops to fortnightly and finally to monthly. At least this can be done at my GP’s.  

5. Having had low blood pressure all my life, so much so that nurses wake me in the night when they take my obs because it’s gone so low, I now find myself having to take blood pressure medication. It seems the other medication has caused this. Oh what joy! The epo injections may push it up more too so I’ve no choice but to take yet another pill. 

6. Did you know that ingrowing tow nails are a side effect of having had a transplant? No, me neither. I’ve been booked in for a couple of months for mine to be sorted. That gives them time to get my anaemia a bit better and for this infection to have cleared up. 

Wow. It’s so hard to keep up with it all. Sometimes I leave appointments with my head spinning. This week I also left with an A4 sheet of the plan for the next few weeks. 

Life is never boring with MDS. Sometimes I think nothing will surprise me but I will admit to being shocked this week at the extent of additional problems going on. I will continue to grit my teeth and get through it all as best I can. I’m sorry not to have better news for you all. At least the sun was shining today and we were also treated to a super moon. I guess I’m going through a period in my life where I am walking by the gentle light of the moon and I’m looking at the stars. Eventually I hope to step back out into the warmth and love of the sun. 


Wherever you are and whatever you are doing I wish you well and many beautiful moments of light punctuating the darkness. 

Tuesday 30 January 2018

Nothing not even cancer or death can stop love

Hello Everyone,

Well my cold turns out to be Respiratory Syncytial Virus Infection. (RSV). From reading up on it, it mainly affects babies, older folk in care homes and people like me with compromised or suppressed immune systems. My consultant sent me an email with the good news and said I would have to take some extra antivirals for 2 weeks. I’ve been prescribed Ribavirin.

When I took the prescription to the hospital pharmacy I was told the prescription was wrong as the dose was too high for someone of my weight and in fact was twice as much. I suggested the pharmacist contacted the on call haematologist which he did. She told him that was the correct dose for treating someone post transplant. I’m always glad to oblige and help people learn something new.

The tablets are disgusting. They are only small but they have a powerful effect and I am feeling extra nauseous.

I also had to collect a bowel permeability test. This measures the amount of inflammation in my gut. It involves drinking a syrup first thing in the morning then collecting every bit of urine for the next 5 hours. I have to fast from the night before until 3 hours into the test. The problem will be trying to fit 3 doses of the antivirals that day because they have to be taken with food.

It’s a never ending job keeping up with all these bits and pieces. You have to be highly organised and that’s just remembering all the appointments. This week I have an appointment on Tues, Weds and Thurs. I have a CT booked for the week after next. The week after that I have an extra appointment with an oral medicine specialist and a rheumatologist. I’m waiting to see a physio and a gastroendocrinologist. This is on top of 2 days every fortnight in the Guys Cancer Centre and being seen by the haematologist every 2 weeks. ‘Tis a real challenge fitting in any “normal” time  as well as all these appointments. However I still do and I’ve had a nice birthday and also been out to celebrate my gorgeous nieces 18th birthday.

In honour of my birthday, if any of you feel so moved and have a little spare cash, you may like to donate to the small charity that supports people with my rare cancer. It does an incredible amount of good nationally for people, who like me, have had to make this enormous change in our lives as we learn to live differently.

http://uk.virginmoneygiving.com/SomeoneSpecial/RebelrevfightsMDS

I’m proud of my little sis Gail and her husband Jeff for raising such an amazing young woman. She is such a credit to you. Looking forward to seeing you all on the official birthday of Tuesday. Was nice to spend some social time with my big sis Dawn Marsh and her two eldest Danny and Karen

Before I sign off I’d like to say I’m thinking of my lovely Aunt Vena who is really sick in hospital and my cousin’s who are keeping a bedside vigil. Shelley, Kim, Deborah, Mark and Steve you are a credit to your mum and she loves you all so much. You could feel the love in the air this afternoon. Don’t you ever forget that love doesn’t die. People do but love continues.

Friday 19 January 2018

Thank God for the good people in the world

Here is this weeks update that has been full of light and love as well as the usual challenges. 

For the first time ever, both lines on my Hickman worked perfectly this week. This was the case for day 2 as well. I’m well pleased. It may be because I’ve got a caught a cough and cold. All the coughing may have dislodged something. I’m hoping that the antibiotics and antivirals as well as antifungal drugs do their stuff and it passes soon. I will admit to feeling pretty rotten just now. I didn’t get up till 11.30am today. Lol. 

I’m still bruising nicely. It seems this may be a result of all the steroids I continue to have to take. 

Some more good news is my car key has been found. Thank you to all those who prayed to St Anthony, who is the patron saint of lost things or St Jude, who is the patron saint of lost causes or who just prayed or sent positive vibes. I’m so pleased my chemo brain only misplaced the key rather than lost it out in the street. It is now safely in a Farraday Pouch and has a tracker keyring attached curtesy of my big sis Dawn. 

Also a huge thank you to all of you who contributed to the crowd funding set up by my good friend Tina after a suggestion from Alan. I picked up a new dash cam today to replace the one stolen and I had it hard wired to the car. You are a brilliant bunch of people and I am so blessed to have so many wonderful people in my life. I hope I have managed to tag each of you who donated apart from a couple of anonymous donors. I may also invest in some CCTV with what’s left over in order to prevent a reoccurrence. 

The latest from the consultant is that the horrible pain I get after eating may be as a result of my pancreas not working properly. They want me to do one more test before commencing on yet another drug which may help sort things out. I wish I could stop taking tablets but if it helps I’ll put up with it. The pain is so awful I’m willing to try anything. I’m also being referred to a gut specialist doctor to see if anything else can be done. 

It also seems that despite my never give up attitude and going up and down the stairs as often as I can, I have some muscle wastage. This, again, is because of the steroids I take. I’ve been referred to a physio for some help, as it’s becoming more of a struggle to get up and down the stairs. It’s horrible to feel that you are going backwards despite your best efforts. 

The other thing I needed this week was a B12 injection. Let’s hope that helps with the ongoing anaemia I am experiencing. 


I’ve been thinking about all the good people in this world. Sometimes things can feel a little overwhelming. It reminds me of this wonderful quote which I will finish with. “To the world you are just one person but to one person you may be the world!”

Sunday 14 January 2018

The gift of music

I’ve been having an interesting few days. I’m away with my long suffering partner for a few days R&R. We have decided that as I can’t travel abroad just now we will explore the uk. On this occasion we also combined the trip with my choir singing at Portsmouth Cathedral. 

Yesterday morning I set off for my rehearsal. I managed to find a high stool to perch on. I really enjoyed our 90min rehearsal. Some of the music was brand new to me. Some I had last sung as a child. We then had a nice lunch break and a chance to catch up socially with each other. Sadly it was too cold to take a “stroll” on the seafront. Then it was back to the Cathedral. The acoustics were amazing as we rehearsed in place ahead of the service. We all enjoyed ourselves and were able to sing to our full potential as the building was very kind to our voices. This meant a fair bit of standing for me. I sat whenever I could but in order to sing well it’s important to have good posture. 

After evensong some of us went for a meal to celebrate Simon, our choir trainers birthday. By the time we came back to the hotel I was happy but exhausted and in pain. 

Sadly I still get this awful gut ache after I’ve eaten as part of the GVHD. 

Today I’ve suffered from exhaustion. We got up for breakfast and then I needed a nap before we went out. I’ve felt cold and weak all day while out. Tonight the gut ache started in the restaurant and I was almost doubled over when we got back to the hotel. I’m glad I had the foresight to being a hot water bottle. I curled up in bed in agony until the pain wore off and I slept for a while. 

I’ve been very pale today too. It’s the price I pay for exerting myself yesterday. I wouldn’t have it any other way though. A few months ago when I couldn’t hear I doubted I would ever sing again. Then I got my new hearing aids and yesterday I was able to hold my own. There was only 4 sopranos singing my part and I was able to complement my colleagues and contribute fully. I am so grateful that despite everything I can still find these pleasures in life. 

Tomorrow I will do a few more tourist things around here, like visiting the Mary Rose before I head back to London. 

Tuesday I have an appointment with my consultant. I hope they have some good news for me. The way I look and feel though does make me wonder...


My encouragement to everyone is to push it a bit and do something you enjoy. Even if you have to have a day of tired exhaustion, it’s worth the lift it gives you emotionally and spiritually.