Busy week

I had a great break in Ireland and really enjoyed catching up with family Catherine and Elaine and friends June and Roland. Will post a few shots to give you a flavour of the beauty of the place later.

It was great to have some space away from the hospital. I’m pleased to say that the awful pain at my PEG has subsided. I have to have an ultrasound on Thurs morning to check the collection has gone. Collection is the medical term for a build up of pus. Nice eh? It’s stings a bit but is no where near as bad as it was when I first came away. The antibiotics have obviously worked. The sleepless nights were worth it!

Sadly my GvHD flare has not settled. I’m still having horrible gut issues. My muscles and joints are awful. My skin is very frail and itchy. My mouth is full of sores. My eyes are really dry and my throat is sore. Apart from that I’m fine. Lol. 😃

I’ve had my two days of ECP at Guys Cancer Centre since being back. I’m seen in Kings next Tues and they will decide what the next steps are. Meantime I will continue to grit my teeth and get through this each day at a time.

I have a busy week this week. Mon and Tues has been much needed ECP. Weds I need to write up a funeral and design an order of service. I enjoy doing this because I think it’s so important to give people a personal send off amd do the best job you can. It’s the last thing you can do for someone and it should be done well. Thurs I have my scan and then have to get to High Wycombe for a meeting about medical education and what’s important from a patient perspective. On Fri I have the privilege of taking Tracey’s funeral and enabling her grieving family to carry out their last act of love for the woman that gave them so much.

Even when you are as sick as me, even when you have all these hospital appointments, it’s still possible to give to others and do what you can to make the world a slightly better place. That’s my encouragement to each of you. Do what you can, while you can. Like Gandhi said “you must be the change you want to see in the world” Have a good week and share the love and light wherever you can. Xx

The Rebellious Rev’d flexes her muscles

It’s a weird time for me just now. I’m very happy to be back in the Kerry mountains. It’s been too long since I’ve been able to take a break. It’s only 2 weeks but it’s better than nothing.

I seem to be having a bit of an extended blip. You may remember I had a couple of months without accessing my specialist ECP treatment for my GvHD. This was because my Hickman Line packed up. I seem not to have caught up since then.

My current symptoms are more pain in my muscles, joints and stomach. I’m wheezing a bit and breathless on exertion. I’ve got sores in my mouth and on my throat. I feel more nauseous than normal. My nails are splitting and my mouth and eyes are very dry. My skin is bruising easily and I have very itchy skin too. The other weird thing is I’ve taken to groaning and moaning in my sleep. It’s called catathrenia. My partner played a recording of me back. It’s like a banshee. Lol. My muscles have also got very weak. I can’t always get up stairs. If I am carrying shopping or a bag I find it impossible to get up the 3 steps to my front door. When I get up in the night or first thing I feel like my legs are not going to fully support me. The other thing I can’t do is stand unaided from a very low sofa or chair. What a crock eh?

Despite all this I am trying to keep engaging in other interests and also trying to be alongside others in the ups and downs of life. I continue to fight the unjust system that continues to underinvest in the NHS and Education. I continue to challenge people who wield their power in an abusive way. I fight on to protect my grandchildren’s school from the money grabbing academy sector.

I think when you have a potentially life limiting illness it gives you a unique outlook on life. You don’t get wound up by the little things that irritate and you learn to pick your battles when campaigning. Our lives end the day we stop standing up for the things that matter. It’s so important that I keep an outward focus and keep myself grounded. I also need stimulation intellectually. I love being asked to take services, or to preach, or to write a comment piece or blog or help one of the blood charities. I’m more than the sum of my bone marrow and blood results. I’m also an emotional being and a spiritual being. These aspects of me need to be nurtured too or else I’ll get out of balance and feel miserable.

Now having put that out there I’d like to make a really important point. This is something all carers, partners, family and friends should know and practice. Please please please never make a decision for me but rather with me. Don’t not ask me to do something because you think I may be ill. Let me make that decision. I promise you I will say no if I’m not up to it. You deciding for me doesn’t treat me as an adult and does not give me the opportunity to say yes and look forward to something. I know people do it for the best of reasons and think they are helping to protect me. Whenever I find out this has happened I get irritated. When I was first diagnosed and for many years after I didn’t tell anyone I

had cancer. I didn’t want people giving me that “poor you” look. I also definitely didn’t want people to start taking responsibility for decisions I should be making. I’ve been an independent wotsit since I left home at 15. Cancer will not stop that independent streak in me. I hope all that makes sense and you can see where I am coming from.

One of the things I love is the thought that some of the best days of my life haven’t happened yet. I can’t wait and am really looking forward to some new experiences. Wanna share in the fun? Xx

Revenge of the PEG

One thing that living with cancer and the consequences of treatment has done for me is being me into contact with individuals and organisations that I would have never met. Today was testament to that. I met some great workers from Anthony Nolan and was able to participate in a photo shoot for some publicity material for them. 

I was very happy to do this because they do such an amazing job of raising the profile of blood cancer and stem cell transplants. It’s always good to give no matter what. It’s especially good to give when you are trying to put something back into an organisation that has saved or extended countless lives. 

I also had clinic today. I saw the very dedicated and supportive Victoria and Henry. Before that I had my PEG site evaluated by the nurse specialist. Sabina is also a great person to have in your corner. She checked it all out and said she felt it was infected. She also said that the previous advice, given by microbiology, wasn’t right for my circumstances. When my last swab was taken it came back saying they had detected thrush. They (microbiology) thought this may be skin contamination and no treatment was advised. Over the last two weeks the pain and oozing has gotten much worse. Sabina said that in future to be aware that as I’m immunocompromised and symptomatic, treatment should have been started. I now have some strong antibiotics and stronger anti fungals. I also have a manuka honey dressing with a foam dressing on top of that held in place by some opsite. It really is painful. I nearly yelped when Sabina moved the tube. I had to be scraped off the ceiling. Let’s hope all that does the trick. It’s even more important to sort it out because I’ll be away for a couple of weeks and really don’t want this causing problems. 

The good news is my counts have held up well since my last transfusion.  The odd thing is my iron is low, despite the numerous transfusions I’ve had which should mean it goes high. The working theory is that the gut GvHD is stopping me absorbing. When I come back I will have an iron infusion and see if that helps. 

Sadly my GvHD remains poorly controlled. As I write I have a really awful stomach ache and need to keep disappearing to the loo. My skin is very fragile and really itchy. I have a permanent sore throat, mouth and gums. My legs are painfully stiff as are my joints and I’ve been fairly wheezy too. What an old crock.  

Despite all this I had a lovely weekend just gone and was unusually out fri, sat, and sun night. This weekend coming I’m away singing in Norwich Cathedral all weekend. Even when you feel rubbish, it’s important to do things that take you out of your self. It would be easy to become insular and that makes you concentrate on how crap you feel and, in my opinion, that makes you feel worse.  Balance in all things is key, even in life limiting serious illnesses. 

Victoria and Henry have increased my immunosuppression drugs and we all hope that will improve my GvHD symptoms. Sabina is arranging an ultra sound to check what can’t be seen under the PEG site. I’m really fortunate to have such knowledgeable people working with me to make my life easier. Let’s hope this starts to work soon as I’m dog tired from the bearing the weight of it but extremely grateful to the NHS and all who care, that I’m still here and breathing. Also that I access all this treatment promptly and for free. Thank you just doesn’t cut it but it’s all I can say. You are stars!