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.

Dealing with fear and panic

What a day!

In London it’s been a beautiful warm and sunny day. I arrived at the hospital in good time for a CT scan of my sinuses. That all went really smoothly.

After I had finished there, I went round to blood tests as I also had a haematology clinic appointment. There were 25 people in front of me. Half way through the waiting time, endoscopy rang to say could I get to them sooner as they had had some cancellations? I dashed (as much as I can dash, lol) to clinic and explained I couldn’t see them but could they write me a prescription and keep an eye on my blood results. They said they would.

I then headed to endoscopy. That all went fairly smoothly too, initially. The general anaesthetic was administered and I was looking forward to it being over and a nice cuppa and some biscuits.

I came round still in the endoscopy theatre. I had a hard plastic tube still in my throat. I tried to raise my arms but couldn’t move. I tried to open my eyes and let them know I was awake and struggling with the tube but I couldn’t open them. The anaesthetist gave me some more medication, I think she called it reversal. Then she took the tube out. At that point panic set in. I couldn’t breathe. I was gasping for breath and couldn’t swallow. I have never been so frightened. I just could not catch my breath. All the machines started alarming. They had to get suction and oxygen and more medication. The anaesthetist said it can happen with short anaesthetics. She was reassuring but it was still hard not panicking during the short period of not being able to breathe. I don’t know if it was due to all the fluid that had built up or a bronchial spasm or what. It’s certainly not something I want to go through again. It was petrifying. Good job I’m fairly level headed. It was bad enough to have caused PTSD if you are a worrier. I’ll talk to them in clinic when I’m next in and see what caused it.

I woke up very quickly and had my tea and biscuits. Weirdly my tastebuds seem to have been affected by the procedure. I couldn’t taste the sugar and my mouth was completely dried out so eating biscuits was like trying to chew cardboard.

I asked if I could get dressed and I was out of the unit 45 minutes after coming round to recovery.

The weird feeling in my mouth has continued tonight. It’s been hard to eat because I just don’t have any saliva so the food doesn’t break down and that’s with lots of fluid. Let’s hope tomorrow is better.

I’m very glad to have made it back home and to now be comfortably lounging in my bed. I have a working PEG J and my Hickman Line is working too. Long may it all last so I don’t have to go through the trauma of many more procedures.

Thank you to all you lovely people who have been praying for me and sending me positive vibes and love. It helps to read your messages as I slowly get back on my feet again.

I have ECP for the next two days. The weekend will be lovely though when I have the honour to preside over the blessing of my cousin Laura’s wedding. I’m also looking forward to celebrating 25 years of women’s ministry with a service at Southwark Cathedral in the great company of Wendy Saunders and Paula Gooder. Looking forward to some decent theology as well as continued friendship and collegiality.

Some days you are just made up by the fact that, despite the odds, you are still breathing.

Suppressing the ego

Sorry for not updating sooner. I’ve been feeling exhausted. I guess it’s the Rituximab treatment. I have one more dose to go this Friday. Then it’s a 3 month wait to see if it’s worked. 

I went to the eye clinic today. This was a new department for me. The consultant was very surprised that my left eye has so little vision. It’s been that way since I was a child. I was given a thorough examination and the diagnosis is dry eyes and some inflammation. I also have early cataracts but nothing needs doing to these yet. The cataract in the left eye is worse but I don’t notice it, so that’s a bonus. I have been prescribed 3 different medications and he wants to see me again in 2 months to review progress. 

He was a really nice man. I believe he was Spanish. At one point I thought he was asking me if I was dying. It was very amusing because he was actually talking about iodine. Good job I have a sense of humour. Lol. He was extremely apologetic. I said there was no need and maybe mortality should be part of every consultation. He joined in the laughter. 

This week has meant to be my quieter week at the hospital. There have still been 3 appointments. My last one is tomorrow. That will be the final infusion in the Chemo Day Unit. I will miss them up there. They are a really lovely bunch. 

On top of all these appointments and feeling totally washed out I’ve been campaigning hard to try and halt the Forced Academisation of my grandchildren’s school. This week we went on an open top bus to lobby the DfE. Great that we had such lovely weather for it. This sort of thing is important to me. I never just want to be totally defined by my illness. There is more to me than the sum of my physical parts. I’m a spiritual and emotional person too. These aspects of me need nurturing. I also need some time thinking about life and the world and the universe. It’s not all about me. I think when so much attention from the medics is focussed on you, it’s easy to become self obsessed. It’s so much better to keep your horizons broad though. My lovely old chosen mum Marlene used to love a quote from the Book of Chronicles in the bible about God increasing your territories. In other words giving you a bigger world view. I hope that by fighting for the best from education as well as the other bits and pieces I do, that it keeps me grounded in the world and helps me not to become selfish. 

Here’s to continued good weather, good friends, successful campaigns, fantastic medical staff and a cure for cancer and GvHD! 

A life saving gift

So another long couple of days being treated by our wonderful NHS. 

Yesterday I spent the day on the Chemotherapy Day Unit. I left home at 9.45am. I got home at 7.45pm. During the intervening hours I had my premed cocktail of painkillers, steroids, and antihistamine. Then I had my retuximab infusion. While this was happening they realised I needed a blood transfusion and a top up of magnesium. They tried to arrange it as it had to be done by Tues morning when I’m next due for ECP. 

As soon as the retuximab was finished they put up the magnesium. I hate having magnesium. It doesn’t matter how I try to get it in me, it has an impact on my system. If it goes in the PEG I have to dash to the loo straight away. If I try to swallow it, it makes me puke. The only way is via an IV and that makes me feel so hot and weird. They have to slow it down because it makes my heart beat fast otherwise. By the time that was finished it was too late to have the blood transfusion too. My ever helpful CNS Sarah was great and arranged for me to have the blood today. 

So this morning I head off at 9.45am again. Ambulatory care were waiting for me and had my bag of life saving cells ready. 

My neighbour was a man called Marshall who was an ace guitar player. He chatted to me non-stop for an hour. Lol. At least that first hour flew by. 

Thank you to whoever the life saving stranger is who gave me such a precious gift today. It’s much appreciated and I promise to use the gift wisely. 

This coming week I have 4 separate hospital appointments. If the staff are as lovely as they have been these last 2 days that will be no problem. 

Many people have asked what the new treatment is about. The idea is that the retuximab attaches itself to some specific white cells called B Cells. These are the buggars that cause the inflammation in people who have GvHD (Graft Verses Host Disease). The idea is that it dampens down their inflammatory response. It takes a couple of months before you know if it’s been effective and it effective in about half the people that have the treatment. Let’s hope and pray I’m on the half that benefits. 

Currently it’s making me feel rubbish. My muscles and joints really hurt. I yelped at one point today as I tried to pick something up and my wrist gave out. The other day, I went to get something out the fridge and came over really dizzy. I say down quickly before I passed out. When it was safe I stood again but my legs were really weak and didn’t want to hold me. It was a very odd sensation. I’ve learned not to panic in these situations and just let the feelings wash over me. I know it won’t last and I just have to wait until I feel better. 

So I’m half way through this new treatment and I’m stepping out in faith. The summer is coming and some of the best days of my life haven’t happened yet. What could be better. 

Thinking of all those who are struggling and those who have sadly died. I’m holding you in the light.