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! 

Make God laugh, tell her your plans!

Another day, another dollar.

My day started with a protest and joining the NEU picket line at John Roan to support the amazing teachers and staff still fighting for the right to have the best of education for the current and future generations of Greenwich children. It has to be a really worthy cause to get me out of bed at that time of day. These teachers need our love and respect. They have put up with so much.

Then it was home to my morning medications and breakfast. Next it was lots of phone calls to sort out broadband and mobile issues due to changing providers. This should be a stark warning to everyone. I was a loyal Virgin Media customer for 25 years. I was paying around £120 a month for broadband, tv, phone and mobile x2 bundle. It gradually crept up. I rang to ask what they could do to bring the price down and treat me like a new customer. I was only offered a £10 discount. I said that wasn’t good enough so Niamh in disconnections said “in that case they would send me a box and i was to send their equipment back to them and be disconnected in a month” Once i got her name I thanked Niamh for being so helpful.

I did some research and it seems Plusnet had a really good deal and came out very well I reviews. I now have an even better package than I had before because I get BT Sports and can now watch the premiership football and I’m getting broadband, TV, landline and mobile x2 for £56.

It seems loyalty counts for nothing in this consumerist society we live in. It’s worth ringing round to see if you can get a better deal. So far I’ve been impressed by Plusnet. Their customer service is so much better than Niamh and Virgin Media.

After all this I had to head off to Kings for my regular clinic appointment while my partner went to oversee the pick up of my mums furniture which was being shipped to Ireland. I’m telling you, you couldn’t make this up. When the guy arrived with his lorry, he said that he had had 2 hip replacements and couldn’t lift. Also he was told the stuff was in a pallet and outside. Oh my days. Apparently it says this in the paperwork so we. Ow have to pay a £36 wasted journey fee. I wouldn’t mind but there has been loads of correspondence with the company and we sent picture of all the stuff wrapped and taped up and they never mentioned it needed to be outside.  Now I need to get the help of my brothers-in-law to get the stuff to the garage. I’ve also had to cancel my trip for now until I can arrange another collection. What a palaver. It seems the days of people taking real pride in doing a good job are long gone. Life eh? No point letting it wind you up.

Next bit of news is that Kings them discovered my magnesium and calcium was very low and needed urgent replacement. I was meant to go to Guys for ECP as they managed to fix the machine and squeeze me in but Kings wouldn’t let me go. At this point I just sighed. Would nothing run smoothly today? I was meant to be at a meeting at 6.45pm but I’m not going to get out of here till gone 7pm. Sigh... I can’t grumble about Kings. They have swabbed my badly behaving PEG and organised some extra blood tests to look into why my electrolytes keep dropping.

You may remember I said that Henry, the doctor was going to chat about me at the multidisciplinary meeting. They have decided to stop the ciclosporine and start me on tacrolimus and MMF to see if that helps with the GvHD symptoms. More pills to swallow but let’s hope the reach the spot where other have failed. We live in hope.

So all in all a weird day that has by no means gone according to plan. I always say the best way to make God laugh is tell her your plans.

I hope whatever you have/had planned for today has gone well. If it hasn’t I hope you’ve found patience and understanding and love and light surrounding you.

Ps the strange look and weird eyes are the effects of the magnesium infusion. It makes you feel weird as well as really hot and thirsty.

Blood and Solstice

Well here we are again. Another life saving blood transfusion needed. Two amazing strangers have donated life saving cells to keep me going to fight for another day. Thank you, who ever you are. If you are a current blood donor and donated A- blood recently, it could be you that’s saving my life. Ain’t that an amazing thought! 

I arrived at the hospital at 11am it’s currently 6pm and I still have to have another bag of blood. I know today is the longest day but this is a joke. The next bag is due and will take 2 hours. Hope to be home for dinner at 9pm. Happy Summer Solstice everyone. I hope your longest day is also full of light and love despite the annoyances and frustrations. 

So my latest is that last week in clinic my HB was 95. That’s a bit low but ok for me. This weds it was 90. Thurs it was 80. Now it’s 77 hence needing so many juicy cells. Let’s hope they make me feel better. I find it helps with the breathlessness but not so much with the fatigue. I’ve asked why this keeps happening and one possibility is the inflammation being caused by the GvHD could be making me more anaemic. 

My lovely doctor was saying that what I put up with sounds horrible. It so lovely when medics get it and are empathetic. I’m not one to complain quickly. I had my sinus problem for around 8 months before I mentioned it. Unless it’s extremely acute I generally cope with things. The doc arranged a CT scan which has shown inflammation in my sinuses but what he was pleased about was the bone was in tact and didn’t have an infection in it. He was concerned that may be the case. The scan hasn’t been fully reported on yet so he is not sure what it all means but again thinks it can be GvHD. 

Henry, the doctor went on to say that he wanted to talk about me at the multidisciplinary meeting and get a short term and long term plan in place. I certainly like the sound of that. He also said that even though the rituximab hasn’t made a difference to date it’s an important process to have gone through as it’s a stepping stone to the next treatments. 

I’ve been pondering the bigger questions in life as I’ve sat here all day. I’ve listened to the air ambulance land and offered those situations to the light. I’ve collected tears from the young woman in the bed next to me who was in awful pain due to a sickle cell crisis. I’ve hugged and congratulated staff on promotions and pioneering new treatments being announced today. It was good to be here on the day when Kings and Cart - T therapy was in the news. Dr Potter came over really well. Congratulations to Victoria and all your heard working team. Is patients appreciate all your efforts. 

The other thing I’ve been pondering is how we wear our illnesses and disabilities. There is a woman who comes here who looks awful every time I see her. I have never seen her look well. She is a frail timid woman who doesn’t speak to many people. She is often anxious too. It must be hard. Yet when people see me nurses and support staff, they all say how well I look (and that’s with half me blood missing). Maybe it’s that business about the lightness in the soul. I’m blessed with a warrior spirit and a fantastic soul. In that way I consider myself healed. I don’t have to be afraid going forward. I will either get well or I won’t. Whatever happens holds no fear and I will make the most of it. In that respect it’s vital that I keep my outside interests going and life doesn’t all become about me and my illness. 

With that thought surging through me I am hoping to go on a little jaunt to Ireland soon with my long suffering partner. Some Kerry mountain and sea air will do me good. 

When I think back all those years ago to the young woman that used to fly down the right wing when I played for Millwall and Charlton when all this started, I shake my head with wonder that I’m still here. So much has changed. I’ve survived sepsis on 10 occasions and septic shock once. I officially have more lives than a cat! I may only fly around in my mobility scooter these days but at least I’m still breathing and still doing some of the important things to me. 

Right onwards and upwards to the weekend. Have a good one folks. Xx

Carers are important

It’s been a different sort of week for me. My long suffering partner is away for a much needed week of R&R in Greece. That means I’ve been unsupervised so anything could happen. Lol.

I’ve had take away every night apart from today when my lovely little sis cooked me a roast. Only two more nights to go. Shh don’t tell any one but I have some lovely banoffee pie for breakfast. Thanks sis!

As I’ve been trying to do more for myself, I’ve noticed how debilitated and disabled that I really am. If I forget something upstairs, it’s been down to me to get it. What I’ve noticed is I can’t climb the stairs twice in quick succession. If I do I get very breathless and clammy. It’s not a nice feeling. I guess I might be anaemic again.

I’ve also got a lot more aches and pains in my muscles and joints. I don’t know why. My shoulders, hips, wrists and ankles all feel really stiff and sore. My calf muscles feel like they may cramp at any minute and I get shin splints regularly from doing NOTHING!

My stomach is also quite painful. It can be excruciating. I’m very stoical but even I can’t always mask how painful it is. It’s like my tummy goes into spasm and cramp. It makes me feel so sick.

My skin has also been really itchy lately. I’m also bruising easily and getting little cuts and tears if I knock myself. This seems to be related to steroid use as well as GvHD. The skin inside my mouth and on my throat is also sore and at times bloodied and blistered.

I’ve got a headache too today. That’s probably what’s tipped the balance. I feel pretty ropey. I don’t know why things are so hard just now. I’ve got clinic on Tuesday and hopefully may get some answers as to why I feel so rough. In the meantime I will continue to grit my teeth and take a few more painkillers to keep me moving.

Despite all of this I’m still engaging in the campaign to try and halt the forced academisation of my grandchildren’s school. We should never be silent about the important things in life. Having a life limiting illness often gives me a unique perspective that I value.

Balance in all things is so important. It’s vital that we all find the things that give us life and energy even when we are ill. I really enjoyed the women’s football today and the Women’s World Cup in general. It was so lovely to watch the match with my little sis Gail Thompson. It made me fondly remember all the times she just toe punted the ball in whatever direction she was facing. Lol. She had no idea of tactics and didn’t want to be tackled so just got rid of the ball straight away.

I was a different kettle of fish. I would eat, sleep, breathe football. In my first match for Millwall Lionesses, I scored twice. I also played for Charlton. Sadly from the 70-90s, when I was playing, women’s football was not as widely accepted. It was very rare to see it on TV and we were confined to play on Hackney Marshes or Clapham Common or places like that. These days the women get to play in proper grounds. I’m so pleased the game has been recognised for what it is now and this generation of women are able to make a living from the game, if they are good enough.

I’m blessed to have had so many rich and life affirming experiences in my life. I know I will also have more enriching experiences before I shuffle off this planet. That thought helps me get through the difficult days and nights where everything hurts. I hope you are able to direct your thoughts to nice things that give you comfort too.

Count your blessings.

Last week I had a very unusual experience. I had a whole 7 days of NOT being seen at the hospital. Oh my days. It felt good. It was also a bit weird as I’m so used to being on such a short lease.

Getting back to this week and normal service returns. Today I had to be at Kings between 9-9.30am for a hydrocortisone curve test. This involves taking a blood sample every hour for 6 hours. I was given a bed to be comfortable on. This was good as it meant I could have a nice snooze. I’ve been feeling exhausted lately. The other day I was in my mobility scooter wandering around IKEA with my partner and a friend. I was struck by this overwhelming tiredness. I could’ve just nodded off. My limbs felt so heavy and it was all I could do to keep my eyes open.

The lovely endocrine nurse that was doing my blood tests today explained that I should be taking more steroid during the day and not later or at night. She said the gap was too big and that’s why I was running out of energy.

This has highlighted a problem in the system. It was the haematologists that put me on the prednisone and hydrocortisone. They didn’t say about how to space the dose. I didn’t see an endocrinologist until a year later. They assumed I knew what I was doing by then and didn’t give me any info. I must feed it back so that others don’t fall through the net. I will try the new times from tomorrow and hope that it improves things for me.

I also had a pain clinic appointment today. I like it when I have two appointments in one day as it saves an extra trip. Dr Peat, the consultant is very good. I appreciate her no nonsense approach and her unquestioning understanding of how awful long term pain and nausea is. I’ve been suffering from shin splints lately. She suggested a few things and gave me some anaesthetic cream to try too. If that works I can order from the GP.

Tomorrow and thurs I have ECP so that’s four appointments this week. Back to normal eh? To make matters worse, my long suffering partner has gone away for a week. It’s so important that carers get a break. All this illness and hospital stuff takes it’s toll on them. They are often the hidden victims.

All this means I have a week of being unsupervised. Lol. There may be trouble ahead. I wonder what mischief I can get up to?

Sadly, physically I’m not up to much. My nausea is bad just now and my skin is really itchy. I keep getting awful pains in my tummy,  joints and muscles too. I have to wait about another 6 weeks to find out if the Rituximab has worked or not.

Despite all this I try to remain in good spirits. I consider myself blessed in that I’m treated by the best the NHS has. I have a wonderful home and great family and a fantastic circle of friends. I also live in hope that things will improve.

I hope wherever you are in your life that you too can live in hope and see your blessings.