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.