I’m physically frail but a spiritual warrior.

The last few weeks have involved lots of me gritting my teeth.

I eventually stopped throwing up every evening but I was still spiking a temp. Sometimes it would go up to 37.9 but never over the magic 38 which is an automatic trip to hospital.

I’ve been really struggling to eat and drink and of course that in turn has made me feel extremely weak and fragile.

In the end I felt so awful I contacted the hospital. I went in for a review to the day unit. They were their usual brilliant selves. My long suffering partner managed to walk into a lamp post after dropping me at the main entrance. She phoned to tell me this and my lovely nurses said for her to come to the Unit and they would sort her out. They cleaned and dressed the wound and even got a dr to assess her. What a brilliant service. They are worth their weight in gold. She is now the proud owner of several steri-strips and a bit of a black eye. What an eejit! Lol.

Getting back to me, the bloods showed the infection and inflammation markers were coming down. Sadly my HB was also falling. The doctor thought I had reacted to the antibiotics and that made me feel bad on top of whatever virus I had. She wanted to see me again in a week.

Since I saw the doctor my temp has settled and I no longer have been having those spikes. I’m drinking better and have slowly increased my food intake. It’s still not back to normal yet but better than it was. I guess the dietician will have something to say in clinic this week.

One of the things that has persisted is very itchy skin. It drives me to distraction. If I dare scratch it, it makes it 10 times worse. I’m sure having to wear all these extra layers to keep warm isn’t helping. I’ve been given a tablet but it’s not helping. I wonder what on Earth is causing that.

I need to concentrate on getting my strength up because I’m as weak as a kitten. I also need to work on increasing my food intake. I’m working on the little and often method just now. That seems to be helping. It’s such a weird feeling when nothing tastes right and you just don’t fancy dinners. I still struggle to find drinks I like the taste of too. I’m very pleased I can drink water again but I can’t take my tablets with that because I can taste them. Every morning and evening is a real struggle to swallow a plateful of medication. I so can’t wait to reduce all this medication. I’m sure that will help with the nausea.

Before I had the transplant I was thinking about all the things I’d be able to do once I recovered from the transplant and got back to normal. Now I’m 16 months post transplant I’m wondering if I will ever feel normal again. It seems to be dragging on and on and on.

I guess the important thing is that I don’t lose hope and I keep going. I’m sure at some point things will change. In the meantime I have to be patient and just keep putting one foot in front of the other.

Thank you to all of you who are in my corner and who offer me words comfort and support. It means a lot and makes a difference. I may Be physically frail but I am a spiritual warrior. I might not be able to do loads but I can still listen and I can pray and I can hold hands and I have an endless supply of hugs. As you think of me, do let me know if I can do anything for you.

Saved by the NHS again...

Hi Everyone,

Isn’t it wonderful that the days are getting longer? 

I’ve had a very strange week. Since my last post I’ve spent 5 days in hospital. It all started at 3am on Sunday night. I woke up with an awful headache and even though I know I shouldn’t take anti-inflammatory drugs, I took some Ibuprofen. At 6.30am I was desperate enough to take one of my partners migraine tablets. 2 hours later I took another. I felt dreadful. My head was pounding and I also felt like I had a vice around my chest. The pain was really intense and went into my shoulder and up into my jaw. It was made worse by breathing in. 

Of course when my partner rang my haematology team for some advice, they said we had to ring an ambulance. We did this even though I objected and said it wasn’t necessary. When the paramedics arrived, they were a lovely team. They did an ECG and,  as I thought, discovered I wasn’t having a heart attack. My BP was sky high though at 185/95. I’m usually a 90/60 person but it’s been creeping up because of the ciclosporine and steroids I take. A couple of weeks ago I was started on some low dose blood pressure medication but obviously the pain I was in was pushing it up again. 

The paramedics said I needed to be seen and they would take me to the local hospital. I said I’d rather go to the team that looked after me and would go with my partner to Kings in the car. 

The wonderful paramedics phoned Kings and spoke to my team and said they were happy for me to travel in the car as long as Kings were happy too. So that’s what I did. 

When I arrived I was told I would need to be admitted. Fortunately I was taken back to the ward where I had my transplant. The fantastic staff on Davidson Ward made me really welcome. Sadly I was feeling so crap I couldn’t talk to them properly. My head was still burning and pounding and my shoulder and chest still hurt. Also my tinnitus was going wild in my ears. 

Again in the middle of the night I got worse and I started to throw up. The staff had to give me IV anti-sickness to give me some relief. By the next morning I began to feel human again. I saw the amazing Austin. He is a wonderful doctor but doesn’t do the post transplant clinic so I don’t see him so often these days. He told me that my infection and inflammation markers were high. He arranged a chest and shoulder xray and a CT scan. He also started some high dose IV antibiotics. They make you feel really sick but are a necessary evil. 

The CT scan showed some damage from the recent virus I’d had and signs of active virus. The shoulder scan just showed arthritis but they wanted to do an MRI in case anything had been missed. 

Austin also wanted a rheumatology opinion on what could be going on. Fortunately I had an outpatients app booked for Friday any way. 

During the course of the week my HB was dropping like a stone even though I’d only had a blood transfusion a couple of days before I came in. In the end I had to have another blood transfusion. 

I saw the rheumatologist, who was a new consultant to me, hailing from Limerick. He was quiet and thoughtful and very thorough. So often doctors are stuck in their own specialism and think that’s the world. What impressed me about this man was that he said he would liaise with Austin as he didn’t want to put me through unnecessary tests. How refreshing is that? He said he thought it might be worth doing a PET scan and some specialist blood tests. He also said there was a lot of inflammation going on and def something autoimmune. He wasn’t clear what it was but was willing and happy to work with Austin to see if they could put together the pieces of the puzzle. I was really pleased by this response. 

Back on the ward the lovely Ionna was waiting for me. She is Austin’s junior doctor and comes from Greece. Thank goodness for our EU workers. She was very apologetic but said she had to do another bone marrow biopsy. She said not to worry as she had a lot of local anaesthetic with her. We both laughed. I said to her that one day we would say “how barbaric” about the way we take bone marrow samples. She agreed and said she hated doing them as she knew how much they hurt. 

Despite giving me lots of local, the biopsy was really hurting, lots more than normal. Ionna was great she kept putting in more local and giving it time to work. I said “don’t worry I’ll just grit my teeth as I’m used to it” She was horrified at this suggestion. She said maybe because there was so much inflammation in my body was the reason for the extra pain. Eventually she got the right spot and got her sample. It bled lots and has been extra painful over these last 24 hours. I’m sure it will calm down. 

That same day I also saw an oral medicine specialist to advise on the sores in my mouth and the exceptionally dry lips. I saw 2 doctors in that department and they both gave me the same advice so I’m hoping that will help. 

The final test was another lung function test to see if the damage to my lungs had gotten any worse and if it could be reversed in any way. 

I’m now happily back home and having a duvet day. I’m back to the haematology clinic on Tues but have a gut CT booked on Monday. I then have ECP Weds and Thurs. Finally a pre op assessment for my ingrowing tie nail which is a complication of the transplant on Friday. 

I have extra antibiotics to take for a week and the medics will reassess what to do next once some of the results are in.  

Wow what a lot of attention from the NHS which was working at its finest. Thank you so much to all the fantastic nurses and doctors and support staff who helped get me back on my feet. You deserve far more recognition than this blog can give you. 

If you see good practice people, please do say so. We are often so quick to complain and more reticent to compliment. Our NHS and it’s embattled workers need our support at this time. They do such an amazing job under such difficult circumstances. Let’s big them up. 3 cheers for the NHS and thank you. 

You are one in a million. 

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. 

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.

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!”

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. 

Some of the best days of your life haven’t happened yet!

Hi there everyone,

Hope your christmasses have brought some light and love to your lives. If Christmas is a tough time for you, I hope you have come out the other side ok.

I’ve just recorded a review of my year for BBC Radio Kent. So much has happened. It’s incredible when you look back in one session at all the ups and downs.

What I’ve realised is I finish the year stronger both physically and emotionally from how I started the year and I’ve learnt lots about myself.

I also finish the year having the strength to start taking Church services once more and maybe being able to do some voluntary work.

That doesn’t mean life is plain sailing. I woke up Boxing Day to discover I had some deep purple bruises. Very pretty colour but I have no recollection of knocking myself. Weird or what?

The last couple of weeks my legs have been swelling too. This seems to be getting worse. I start the day with them puffy and by the end of the day I have no ankles and not much knee either. They are also so heavy and stiff. I’ve no idea why this is happening but I guess it will all become clear at some point.

Tomorrow I am off to Guys Cancer Centre to have a urokianase Infusion over 2 hours. The ECP nurses don’t think it will work but the IV specialist team want to try it to see if they can get my line working properly.  My little sis Gail is coming with me and we are going to have a nice afternoon together after by having lunch and then going to visit The Shard.

It’s so important to have a mixture of nice treats alongside all the challenges and hospital appointments. I’m looking forward to there being more treats this year and lots more mischief...

If you have an idea for some treats or mischief that you’d like to take me on, get in touch. I know I haven’t been able to see all of you since the transplant. I know I also have some treats left over from my 50th birthday that have been on long term hold. If you can remember making an offer, I feel I’m now ready to do these things. Please send me a private message with the suggestion of a few dates.

So as we come to the end of the year and thinking about starting afresh, I would just like to remind you that 365 days means 365 new chances and it’s up to you what you do with those opportunities. I hope you enjoy all the possibilities that come your way and hold on to the fact that some of the best days of your life haven’t happened yet.