Rebel Rev becomes an astronaut

I’m having a lovely time in the mountains in Ireland. Not a medic or needle in sight. Bliss. Maybe my failed cannula bruises may have healed by the time I get back to London. 

It’s weird wandering around with a tube coming out of my nose. People react in different ways. Some take it in their stride and make eye contact and smile. Others glance when they think I’m not looking and look away when I raise my eyes. Some completely avoid looking at me. And some overcompensate and stare. 

The tube makes people think I’m sicker than I am. With my feed tucked in my rucksack on my back and the tube running from there into the one in my nose makes it look like I’m an astronaut. That’s what I tell the kids anyway. One child walked around my table twice to get a good look at me early. I just smile. No point letting in wind me up. 

Tomorrow is my grandsons birthday. Hopefully the day will be good and we can go and have some fun. 

Hope you are having fun where ever you are too. 

Rebel Rev has a frustrating day

Dear All

Thank you for holding your breath with me today. It’s been a really weird day. 

I got to the hospital at 9am. Yuck! I went to Haematology Outpatients (HOP) and had a blood test and check over. I was finally sent for to go the the angiotheatre at 12pm. I was changed into a gown and had more obs done. The consultant came and I explained that I had had a Hickman line before and as a result the right side became occluded. He said he would check. 

Another doctor came to take consent. He was a very serious man and talked about the risk of pain, infection, bleeding, punctured lung, blood clot, but not to worry if things go seriously wrong they have the expertise and equipment to be able to cope with any problems. Oh my days! Good job I’m not an anxious type of person. I was taken into theatre and wired up to a monitor. 

The consultant came in and did an ultrasound of my neck and chest. He said that the right hand side was still occluded and it was likely to be that way permanently. He explained he would go in through the left again where the other line had been removed the week before. Then he looked at the Hickman I had been given and he said it was no good because it was a right sided line and he needed a longer left sided line. 

The nurses then tried to source the correct line. I explained that they normally came from Guys. I was eventually let up from the operating table and waited in a chair. At 3pm they said it would have to be rescheduled as they couldn’t get a line today. I was a bit peeved to say the least. Then I thought about the fact that it would mean I could have a decent bath and shower for the next few weeks and not have to keep my chest dry. Also I won’t need to find someone to change the dressing every week. Every cloud has a silver lining. 

I was taken back to HOP where i had another chat with my nurse specialist who said based on today’s bloods she was happy for me to go to Ireland as long as I’m sensible. That might be a challenge. I’m really pleased about that. 

I then went over to dermatology where they had arranged for me to see a dermatologist after the itching episode. When I arrived the receptionist was so kind. When she realised I’d been in the hospital since 9am she went off and made me a lovely cup of tea. What a star. 

After this I saw a lovely young woman who was very honest with me and said it was an awful symptom and was really difficult to treat. She gave me some more lotions and potions and some advice for if it happens again. 

I am slightly scared it will happen again as it was so awful but at least I feel like I now have a plan. 

I have ECP tomorrow and Saturday. They are going to run when they see me and realise they have to get 2 cannula into my very scarred and crap veins. I wonder how many attempts it’s going to take. As you know I’m used to dealing with pricks but I’d rather not. Lol. 

Thank you for your continued support, prayers and encouragement. It all helps in this most arduous of experiences. 

Who knew an itch could be so severe

Well here is my update for those who like to keep up with me and hope and pray in the background.

I came out of hospital on thurs after 4 weeks and 3 days incarceration in that tiny hot room.

Friday night, much to the shock and surprise of my long suffering partner, I asked to be taken to A&E. I never voluntarily go to A&E so it just shows what a state I was in. The problem that took me there was the most excruciating all over itching I have ever experienced. I was beside myself. I couldn’t talk or sit still. I tried to get in the bath with my PJs on. I got in a cold bath but it didn’t help. I wrapped my legs in wet towels but that didnt help either. I used cool packs from the fridge, moisturisers and steroid cream - nothing worked. I doubled up on the very strong anti itch medicine I had been given before and even that didn’t stop it. It took 6 hours of agony to subside. You wouldn’t think such an innocent thing like an itch could create such a huge problem. I’m now having to take so much medication to keep it at bay that I can’t drive. I’m finding that really difficult. If anyone has any tips for dealing with extreme itching I’d love to know what works for you.

I’m managing my feeds at home relatively well. My biggest problem is I have to have 1200mls but the bottles only come in 500mls. This means a change over in the early hours. It’s like torture having to wake every night. Like having a baby, sort the feed then back to sleep! Lol

Tomorrow I’m having a new Hickman Line inserted. The one that was removed is healing nicely. I can’t say I’m looking forward to it. It’s like being stung by a swarm of bees as they give you all the local anaesthetic injections. I had 5 to get this one out. Each in a different place so you feel each one. I wonder how many it will take tomorrow?

I am also going to be reviewed by the haematology team and will hopefully know whether I can go on my planned holiday to Ireland. Please keep everything crossed that every aspect of what i must endure goes smoothly.

Rebel Rev is stir crazy

Hello Everyone,

Another glorious day. I managed to get out for a bit with Maggie and Annie. We went into Ruskin Park and came across a trapeze teaching session. It looked such fun and at £25 for two hours isn’t badly priced. 

I’m saw the consultant this morning and she dashed my hopes for going home tomorrow. She said it would be a little while longer. Whatever that means. She is going to increase my immunosuppression drug in a bid to calm the GVHD. I’m also to have a new Hickman Line put in before my next round of ECP. What joy. 

The nurses have been amazing the last couple of days. It started with an inexperienced nurse giving me my medication too quickly down the tube. That meant I spent the rest of the morning throwing up. Since then I’ve been sick after having meds but not as much. The nurses have been giving me meds throughout the day instead of all in one go. It’s harder for them but they can see it’s best for me. 

I am definitely going a bit stir crazy after a month in this hot little room.  Keep the prayers and positive vibes going that I get out of here soon. 

Hope you are having fun and that you have found some cool places to hang out. Xx

Rebel Rev is crap literally...

Hi Everyone,

The last few days have been a real challenge. I had my 2nd day of ECP yesterday and my line has continued to play up. In the end they had to put a cannula in. It took them 3 attempts but they got there in the end. They have decided enough is enough and I have to have a new line in. Oh what joy. They are also considering putting me on weekly ECP instead of fortnightly until this blip has subsided. 

My gut is still very inflamed and I’m not absorbing much. They gave me a two day break from the feed but I still had to have all my medicine via my tube. It’s not long after that goes in that I end up either throwing up or running to the loo or even worse both! I am so exhausted with it all. Today is the first day I haven’t got dressed. 

I’ve been on a huge dose of anti diarrhoea medication and so far it hasn’t made a difference. They have doubled the dose now. Oh my days! 

The plan is to up the medication until things are being absorbed and up the feed until it can be tolerated and then wean the TPN. They would still like this to happen in order for me to go home next week. Then it can all be managed as an outpatient. 

I’ve told them I’m worried as I have a holiday booked in a couple of weeks and I really don’t want to lose all that money that’s been paid for the fare. I’ve already lost £200 due to not being able to attend a weekend I had booked. I can’t get insurance just now so can’t claim it back. 

Please keep the prayers and positive thoughts coming my way and visualise me getting over the the Emerald Isle and breathing in the fresh mountain air. 

I do appreciate all the visits and messages and pressies and cards. You are a great bunch of people and I am blessed by your presence in my life.