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.