More blocked pipes sagas

Sorry it’s been a while since I posted an update. I’ve been gradually feeling more and more unwell. I haven’t had ECP for 6 weeks and my body is complaining. My muscles and joints hurt like mad and I feel really tired and sick. On top of this I spiked a temperature on Monday and threw up in the middle of the night.

I am well used to vomiting but this was the largest amount of puke I’ve ever seen. At one point I was worried that I would fill and overflow the bowl.

I’m now on double strength antibiotics which of course add to the nausea and my steroids have been upped.

In terms of the rest of me, my Hickman Line is still not co-operating. I am booked in for a linogram on 4 April. Kings are still looking into if there is anything else that can be done. I went to Kings on Tues because of the spike in temperature. I saw the lovely Austin. He is such a great consultant and has known me for many years. He has a great sense of humour and a really cheeky grin. It was so nice to see him. He suggested that Kings may be able to just rewire the line. He was going to look into it.

On top of this my PEG is blocked. I went to see the dietician yesterday. Katie is great too and I feel we work well together. She listens to me and appreciates all my efforts and I take on board her advice. Between us we decided I still need the PEG as nutritionally I am still vulnerable. This will need a small operation to remove what’s there and replace with a new tube. It will probably take 6 weeks due to my complexities and needing senior people involved. In the meantime I have to continue the little and often regime with my food.

Despite feeling rough I still have some nice things to look forward to. I am accompanying Patient Liaison Sophie and representing MDS UK at the British Haematological Society conference in Glasgow next week. While there I’m hoping to meet the irrepressible Ally as well as some Iona friends and colleagues.

I hope wherever you are and whatever you are doing you find some sunshine in your day.

Having a bad day

I’m feeling a bit emotional and fragile today. That’s unusual for me. As regular readers of my blog will know my Hickman Line is playing up and not working. This means I haven’t had ECP for over a month and I feel the effects of that. Normally when a line blocks a linogramme is booked and it’s sorted quite quickly. For some unknown reason the request for my linogramme went to the wrong department. Sadly no one in that dept saw fit to return the request or direct it to the right department. This means the poor nurses in ECP have had to do all the chasing on top of everything they already do. 

I finally had a phone call this morning asking me to come in early in the morning on 4 April. It’s so annoying. I don’t cope with mornings very well and they are now expecting me to travel across London in rush hour having not been allowed to eat even though I never have sedation. I also have to take an escort with me even though I won’t have sedation. 

Sometimes I feel so fed up at being prodded and poked and always having to fit into others timetable even when it doesn’t suit me. 

On top of this my PEG has blocked and is stinging. I’m at Kings today so will mention to them and see what they want to do. I feel like crying and hiding under the duvet for a week. Not that it would help things. It’s just sometimes you can feel a bit sorry for yourself. 

I’ve been at Kings for 30mins in the queue to have my bloods taken. There are another 40 people in front of me. It’s gonna take ages. Then when I have the bloods done I will go and sort out another couple of outpatient apps and pick up some lunch. Then I need to be seen in haematology and have to keep everything crossed that the blood results have arrived. 

Tues are meant to be the day I take my beautiful granddaughter to her singing. Despite getting to the hospital 2.5hours earlier than my appointment time, I doubt if I’ll make it out of here in time to get her to her lesson. Children don’t care about illness. They are very egocentric. All she will know is that i haven’t been able to do it again. It’s these things that have a huge impact on family life and create friction. I feel trapped in a nightmare sometimes. 

I know I’m only having a bad day and this too will pass but Oh boy ain’t it time for things to run a bit smoothly...? 

10 March X4

These pictures were taken on 10th March 4 years in a row. In the 2016 photo I was an in patient at Kings. It was a long and painful admission which left me requiring surgery. I had an awful infection and sepsis. It was during this admission that my wonderful team decided I had no choice but to face a transplant. 

The 2017 snap is 5 months post transplant and my hair is growing back. 

2018 the hair is course and thick and a different colour and the weight is coming off as the GvHD takes hold. 

2019 and I’m finally back in my old clothes that I haven’t worn for around 5 years. Good job I didn’t throw them away. Hair is still settling. I have curly patches rather than it being all wavey now. People often think I’ve dyed it but I haven’t. 

It’s good to have these photos to look back on and see the progress that has been made. 

I know I’ve got a long way to go still but I’m glad I can smile and keep going. 

My latest news is that I still have no working Hickman Line. This means I haven’t had ECP for a month now. I feel awful. I’m really stiff. My shoulders have seized up, my neck is stiff, I have gut ache most of the time. My eyes are really dry and I’m exhausted. On top of that my knees and hips and giving me jip and I have a load of sores in my mouth. Apart from that I’M FINE. Lol. 

Let’s hope they get the line going soon so I can recommence ECP as well as have the retuximab that also might help some of these awful GvHD symptoms. 

I wonder what next years photo will look like?

Thank you to all of you who have walked beside me for some or all of this torturous journey. I know it’s been tough on you as well as me. You love, prayers and support mean so much and really do make a difference. 

Another failed Hickman Line

This week has had its usual share of challenges. As you know from my last blog, I had my blood transfusion and very long day in hospital. That always perks you up a bit. The next day I was due for ECP. Sadly despite many attempts, the nurses could not get my Hickman Line to work. The line flushes but it won’t draw. I’m waiting for a linogramme to investigate what the problem is. I said to the nurse “you know what the definition of insanity is don’t you? Doing the same thing and expecting a different result” The nurses in ECP are gutted for me. I’ve had 6 of these things. They are really painful when inserted. It has to be carried out in the vascular surgery theatre. Surely there has to be another way? I can’t have ECP till the line is sorted. 

The other bit of news is that they have decided to give me a 4 week course of Rituximab. They want to start next week. The first infusion has to be given over 6 hours as people often react to it. Subsequent infusions can be given much faster. They can’t give me any of it until they fix the line though. 

It’s frustrating to have to put up with all these extra appointments and invasive procedures when bits of equipment fail. Sadly there is nothing I can do about it apart from embrace the situation and try and learn from it so that future problems can be avoided. Let’s hope I get to talk it all through with a consultant to look at all the options. I shall keep you posted. 

Counting the hours

Well I don’t think it could be more possible to have two such different days.

Yesterday I had the pleasure of doing a 2 hour chaplaincy session in Canterbury Cathedral. During the month of February all the chairs are taken out so you can see the cathedral in all its glory the way the original pilgrims would have encountered the building. I have to pinch myself as I climb into the pulpit to lead the prayers on the hour. How did this street urchin end up in such an amazing place?

I lit a candle in the chapel where Thomas was martyred. This is my custom each time I’m on the rota. It’s a way to show that no amount of darkness can extinguish the light of even one tiny candle. I also do it to offer the conversations I’ve had to God before I leave too. Yesterday I collected tears from several people and it was good to feel useful.

Today was totally different. I went to Kings to see if I needed a blood transfusion. I got there at 12.45pm. I had a blood test to see how anaemic I was. I then went to find some lunch. I came back to the unit an hour later. At 4pm I was still waiting. I was told my counts had dropped to 81. Normal is 120 - 150. Mine has to be kept above 94 so that I can have ECP.

I don’t know what went wrong today but it was nearly 7pm before the blood came from the blood bank. It seems they were on a go slow. The nurses kept chasing but it was just one of those days. I didn’t get home till 9.30pm. It’s a bit late to then be eating and taking medications but some days are just like that. I could’ve got really irritated.  I could’ve complained. I could’ve made it clear how frustrating it is to have to wait so long. Ultimately none of those strategies would’ve helped me. Instead I kept myself as occupied as I could on my iPad and iPhone and spoke to the people around me. I had no control over the timings but I could keep my attitude in check. By doing that I managed to have a fruitful afternoon catching up with the lovely and talented Patient Liaison Sophie and starting to write a new article for the website or newsletter.

It may have taken over 9 hours to get my top up of blood today but I am extremely grateful for the fact that I live in a country that provides this as a resource and that I can accept the donation knowing it was given altruistically and safely and by a system that doesnt exploit anyone.   If you donated A- blood and it was destined for a London hospital then you may have joined my life saving team today. Whoever you are, thank you. I will use your precious red blood cells wisely and they are gratefully received.

Tomorrow I’m back at Guys Cancer Centre for 2 days of ECP. It’s a heavy week medically but I shall also make sure I get out in the sunshine, even if it’s only for 30mins. Wherever you are and whatever you’re up to may you find the strength to endure.

Robo Rev reveals the tubes

I’ve been thinking lately about the invisible nature of so much that those of us with blood cancer or Graft Verses Host Disease endure.  

When I’m out in my mobility scooter, as per the picture, people stare quite a lot. I suppose it’s my magnetic personality. Lol. It’s also because so often I don’t “look” ill. If people were able to see beneath the many layers I wear, they would have a different impression. As you can see with all my tubes I look like Robo Rev!

If I go through my body and it’s ailments these are the things you can’t see beyond my smile:

Painful feet and toes
Stiff ankles
Sore knees
Painful and stiff hips
Stomach ache
D&V
Swollen legs and ankles
Swollen and painful hands
Back ache
Stiff and painful shoulders
Neck pain and stiffness
Jaw pain and stiffness
Sores in mouth
Sore throat
Tooth ache
Very itchy skin
Low haemoglobin
Bronchiolitis
Dry eyes and mouth
Serious hearing loss
Constant nausea

I don’t very often write like this because it’s not me to just concentrate on all that’s wrong and all the things I can’t do. Sometimes though, it’s important to give the whole picture, so that those that look at me funny when I park with my blue badge, realise that there is so much more to people’s illnesses and disabilities than the eye can see.

When I saw my consultant this week I was told that they had been talking about me and trying to come up with a plan. The current idea is that they may start me on Rituximab. This is given via a drip once a week for 4 weeks initially. If that’s not good there is also the possibility of inflixamab. They are less keen on that because there are more side effects. The other avenue they are exploring is a new drug not licensed yet. They may ask for me to receive this on compassionate grounds. They are going to discuss all the options at their MDM and let me know in a couple of weeks.

In the meantime they have the results of my latest chest CT. Apparently the right side is better but the left side is worse so I still have to take my lung medicine. They have booked me in for another lung function test to assess how much damage, if any, has occurred due to the recent infection as well as the lung GvHD. The booking of this test has not been straight forward. I received a letter telling me I had failed to attend an appointment on Monday. Well I only saw the consultant Tuesday who requested it, so I could not have known about an appointment before that. I rang and explained and the man rebooked me for the day of my next clinic. He said he didn’t understand why I hadn’t received a letter or text about the missed appointment. All I could do was say I hadn’t and I’m normally very good at attending and juggling all my various appointments.

Later that day the same man rang me again and said that he has spoken to Haematology and they wanted me to have the test sooner than he had booked it. He offered me another date but I explained I couldn’t do that day as I was at Guys for ECP at the same time he was asking me to attend Kings. He said no worries we can keep the original appointment. I hung up wondering what it was all about and why he didn’t try any other time.

The next piece of the saga came in the post today when I received a letter telling me my appointment was on the day I can’t do. Grrrr! As it’s the weekend I couldn’t ring so will have to follow up on Monday. It’s so frustrating. Hey ho, that’s life.

Next week I have lots of appointments starting with a blood transfusion on Tuesday. You have to be really on the ball to manage all these commitments and competing demands. It’s almost a full time job in its own right.

I saw the Archdeacon this week and was saying how hard I find not being able to work. I can’t apply for a job though while I’m attending the hospital sometimes 4 times in a week.

Oh well I will just have to find other mischief to get up to. If you have any suggestions I’m all ears.

Sending you all some love and hugs for wherever you need it.

Feeling the light and love

Picked up my new bins this morning. What do you reckon? 

I’ve arrived at Kings. The place is heaving. Only another 50 people in front of me for a blood test! Let’s hope they speed through them. 

An update on the fantastic fundraising that the wonderful Lyn and Richard did. You have all now helped me get 2 pairs of glasses. Yesterday I purchased a new battery for my mobility scooter. It’s several years old now and no longer holds its charge. Bit like me really. Lol. Thanks decided as you had been so lovely that I would finally get a replacement. Again it’s just part of the hidden cost of cancer. The new battery cost £128. Hopefully it will last a good few years and keep me as independent as I can be. 

My final extravagant purchase was some magnesium that you roll on to your skin. Apparently it’s absorbed better this way. Regular readers of my blog will know that you often need magnesium infusions. I don’t like them because they make you feel really hot while it’s being dropped in. If I take is via my PEG or orally it upsets my tummy. I spent £8 on this roll on Magnesium that on the websites get very good reviews. I will let you know if it boosts my levels. 

Still got 36 people in front of me. Sigh...

My GvHD seems to be playing up just now. I have sores in my mouth. As said in my last post my appetite has disappeared. My skin is really itchy and my joints ache like mad. Apart from that I’m fine. Lol. Let’s hope whoever I see today has some answers as to why I feel so rubbish. 

Whatever you’re up to I hope it is sprinkled with light, sparkles, love and hugs. Xx