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. 

Change the system

This is going to be a different sort of blog and I’m going to try and bring you with me on one of my hospital days and the week that follows. I hope you find accompanying me enlightening. On Tues I wrote this following email to try and encourage an improvement in the system for those of us with long term. conditions who need a blood test results available for when we see the doctor.

“ I am a long standing Kings haematology; patient. I started attending Kings way back in 2000. At that point, before I wen the t to my haematology clinic appointment, I had a blood test in Golden Jubilee. All I had to do was give my name and the print out and labels for my tests would be on the side and waiting. I was then seen ahead of the main bulk of people as I was going round to clinic and the consultant needed the results. If still have to wait an hour for the results but at least it wasn’t a long wait for the test.

This system worked fairly well most of the time. It was tweaked occasionally but in general there were not lots of complaints.

These days I have to take a ticket and sit and wait with everyone else.  That means I need to be in the hospital at least 2.5 hours ahead of my clinic time in order for there to be any chance of my test being with the doctor by the time I’m seen. I attend the hospital most weeks in one form and another and have to spend hours and hours sitting around the various waiting rooms. It would really help if Viapath could reinstate the urgent blood queue so that I can get at least an hour of time back.

I am immunocompromised and it’s also not good sitting in such a crowded general waiting room for such long periods.

Anything you can do to improve the situation would be gladly appreciated. My ticket number today is 536. The machine was on 479 when I arrived to ‪at 1.45pm‬. My appointment in haematology is ‪at 3.50pm‬. This is typical of how each ‪Tuesday afternoon‬ goes. I also have the added pressure of needing to move the car after 3 hrs of blue badge parking.  There are many hidden stressors for those of us that live with long term conditions. Your help in making life a little easier would be appreciated.”

To continue how this day worked itself out you now need to know that where you have the blood tests is in The Golden Jubilee Department. I then had to walk from there to The Haematology Outpatient Department. Once in clinic I waited the prescribed 90mins. I did have a good chat with the dietician while I was waiting. I then saw the lovely Henry who I seem to have seen on the last 3 occasions. He was very thorough as always and was meticulous about checking the dosage and info on the 2 controlled drugs prescriptions as he didn’t want the script bouncing back.

My blood results are pretty ok for me but I’m fairly anaemic and running at 90 instead of 120-150. The GvHD is also very active and I have swollen legs and feet and my muscles and joints ache like mad. Despite this I took my prescription from Henry and headed off on the exceptionally long walk from haematology to pharmacy. The pharmacy is actually located on the edge of the hospital,grounds in a portacabin on Denmark Hill. It is NOT disabled people friendly at all. When I got there, I was out of puff and in pain. I presented the 3 prescriptions. I have had these medications several times over and over many years. I am aware of what can go wrong in pharmacy so I asked the woman who took the scripts to check if all was ok and I would call back another day as they had an hours wait. At this point I just wanted to get home. I was breathless and in pain. I’d been in the hospital the best part of 6 hours at this point. The woman came back to me and said that the pharmacist had said there was a problem with the controlled drug prescriptions and they couldn’t be dispensed. I asked her what the problem was but she wouldn’t tell me. I said could she not ring the doctor as there was unlikely to be anyone in clinic now? She said I had to take the prescription back. I tried to explain that as a disabled person, I did not have the capacity to walk the length of the hospital again. She said there was nothing she could do and handed me back the prescriptions.

I am not prone to tears but I was very close to crying. I was so upset and distracted that I nearly walked into the path of a cyclist. I had to apologise profusely. I was trying to ring the clinic and my CNS but of course as it was now 5.45pm no one was answering the phone. I struggled to walk all the way back to clinic to have the fortune of bumping into Sarah the CNS I had tried to phone. She told me to sit and catch my breath and she would call pharmacy and find out what the problem was. When she came back to me she said that Henry had just forgotten to put today’s date on the prescription. How bloody annoying is that. The people in pharmacy know me. I had photo ID. I regularly have the drugs and they know they are not abused in any way. It was a simple clerical error and not one of them felt able to go the extra mile and phone the doctor and put the date in. Instead the uncaring and jobsworth employees made a disabled patient walk all the way back across the hospital. My resources became further depleted and my legs were aching like mad. It’s just not good practice and certainly doesn’t give a very professional impression. The least they could have done was keep the prescription to the next day when I had another appointment and could have come back and collected. They in fact did nothing helpful at all and did not try to solve the problem.

I got home at gone 7pm that night. What a long day and I still didn’t have my medication. If I include travelling time, I was engaged in 8 hours plus of hospital related business that day.  The next two days I was at Guys cancer centre. Each time I was attached to the ECP machine for the best part of 3 hours. If you include waiting and travelling time that bumps up to 4.5hrs a day.

My final hospital visit of the week is once more to Kings. This time I hade to have a chest X-ray at 10am and then go to the chemotherapy day unit for my first infusion of Retuximab. This has to be given very slowly the first time. Whenever you are given antibodies it can make you feel rough. What the medics have learnt to do is slowly increase the rate of the infusion but it still takes at least 6 hours. Then there is the hour of premeds before and the flush afterwards. Then I still need to collect the medication from pharmacy even though I’m possibly gonna feel like death warmed up. I reckon it will be a 9 hour day today. Will see if I’m right.

So that’s around 26 hours of time spent in relation to the hospital this week. These weeks are, sadly, for me a regular occurrence. If you had weeks like this maybe twice a month, what would you do? Would you want a smoother system so that you didn’t spend as much time sitting and waiting as those that come more infrequently and don’t have an urgent need for results?

Sometimes I think hospital officials should shadow patients and see what we have to go through. Maybe then things may change.

I post this in the hope of sharing the reality but also improving the system for cancer patients like me that seem to spend half our lives in waiting rooms. Hear my plea and work with me to spread love and light rather that frustration and upset. Please feel free to share this patient experience far and wide. That way all the allied Healthcare Professionals can have a glimpse at the reality that patients live with as opposed to the nice theories and policies and procedures that don’t work in practice.

There are so many good, loyal, dedicated and professional people in the NHS who do an amazing job. My hat goes off to each and everyone of you. To those who just go through the motions maybe think about a career change so that your apathy doesn’t have a negative impact on my well being and detrimentally affect my health.

Today I have been superbly looked after by senior Staff Nurse Sarah in the Chemo Day Unit at Kings. I was also greeted by a wonderful ward clerk called Maureen who was friendly and helpful and a real asset to her team and profession. These are our unsung hero’s. let’s big them up!

“THANK YOU LOVELY PEOPLE. A FRIEND IS SOMEONE WHO REACHES FOR YOUR HAND BUT TOUCHES YOUR HEART.”

Hard Days.

Happy Easter everyone 

Life has been pretty challenging lately. I think that having had a blocked Hickman Line for a couple of months and not being able to access treatment has meant that my GvHD (Graft Verses Host Disease) has been very active. 

How this Manifests itself is that my muscles and joints ache like mad. My wrists and shoulders and ankles are particularly bad. I’m also suffering from a sore throat and blocked runny nose. My nose has been like a tap probably for the best part of 8-10 months. I’m presuming the GVHD is making it worse. I have dry blurry eyes. As you are aware from my last post I also have a very sore mouth. I’m exhausted all the time. On top of this I have horrible belly ache every day and I’m quite wheezy and breathless too. What a crock! 

This week is a busy hospital week. Tues I have haematology clinic. I have to be there 2.5 hours before my appointment time in order to ensure the doctor has my blood results by the time I’m called in to see them. Weds and Thurs is ECP (extra corporeal photoperesis) at Guys Cancer Centre and then Friday I’m in the Chemo day unit for my first of 4 Retuximab infusions over the next month. The first one has to be given over 6 hours as it often causes a reaction and needs to be slowed down. 

I feel like I’m dragging myself through life sometimes. My quality of life is poor. I’m desperate to go on holiday to a warmer climate and gently paddle and stroll on the beach. It’s been 3 years since I’ve been able to leave the country for that reason. I shouldn’t moan because I’ve had some lovely treats recently too. I went to Glasgow with MDS UK for the BSH Conference. The following week I went to Suffolk and spent some quality time with the extended family. This weekend I caught up with my cousin and dropped her back home to the Kent coast and went on to have a nice visit to the beach followed by a meal and Red Joan at the cinema. 

So even though I’m feeling rubbish I still try to do some nice things to create a bit of balance. 

I’m also aware that to day is World AML Day. This is what happens to some MDS patients whose disease progresses. Not everyone makes it and those I’m aware of being on borrowed time are held in the light by me. 

All any of us can do is make the most of the good days and enjoy our blessings as well as accept the love and support around us to help with the struggle. 

Sending light and love out into the darkness. 

What a week

This was my night last night. It doesn’t happen very often. I was still restless at 4am. I’m not surprised. It’s been one of those weeks.

On Sunday I headed off to the #bsh2019 conference in Glasgow. It was fantastic to be in the company of so many experts in the field of haematology all working to help people like me. The dedication and professionalism was superb. It was my honour to represent MDS UK and accompany Patient Liaison Sophie and Chris to fly the MDS Flag and promote our patients, carers and supporters and their needs.

We arrived home shortly after 11pm on Weds. I had to be at St Thomas’ the next morning at 10.30am for a linogram. No rest for the wicked eh? I was grumpy thurs morning as I couldn’t eat or drink or take all of my regular medication. After 2.5hours they finally took me into the interventional radiology theatres. The nice vascular surgeon explained that he had discovered a large fibrin sheath had grown over my Hickman Line which is why it wasn’t working so well. He said he could thread a wire up through my groin and into my chest and that it would have like a lasso on the end that could strip the sheath off. I was surprised that he was going to do it then and there. I was a little unprepared for it but I went with it as I was desperate to get the line working again.

It’s such a weird feeling that someone is pushing things into your groin and you get a pain in your shoulder. It also makes your heart beat funny. I could hear as well as feel all the palpitations. It wasn’t awful but it also wasn’t a pleasant experience. I asked the doctor if it would happen again and he said very likely. Let’s hope it’s a long time before it goes again.

After I came out of theatre I had to lie flat for another 2 hours. I finally got discharged at 6pm. I was hungry and tired and in need of a long cold drink by then. Sadly hospitals only seem to offer sandwiches in these circumstances. Hard luck if you don’t eat them. Something I think could be improved on.

The next day I went to Guys for 11am as I had to have 2 small fillings. I met the amazing Stacey who looked after me really well and put me at my ease. It’s very hard keeping my mouth totally clean. The GvHD means I suffer from an incredibly dry mouth. Sometimes my mouth and tongue are stuck together.  It’s like peeling sandpaper apart. This means bugs are more likely to thrive. The wonderful team at Guys look after me well and I do my bit to keep my oral hygiene in tip top condition. Biotene mouthwash is very gentle and slightly oily and really helps the dry mouth without causing pain. I’d recommend to anyone else suffering from dry mouth. If you have a sore mouth too then add difflam. Again it’s mild and gentle and an ace pain killer.

After I’d finished at the dentist I went to the cancer centre and had ECP for the first time in a couple of months. Guess what. Only one of the lumens was oils draw. Oh my days. The nurse decided to put some stuff into the tube and we will try again on Monday.

I then received some sad news that a lovely friend of mine who I’ve known since 1977 died. Bert was a smashing fella and the world is definitely better for having had him in it. Very had the privilege of living to the ripe old age of 95. Not everyone is blessed by this. Death always puts things into perspective. I’m Berts case Death is not an extinguishing of the light. It is a putting out of the lamp for the dawn has come.

A busy week with lots of appointments and energy drains. I’m glad I can do it but it’s hard going. On Sat I prepared a baptism service for my great nephew Harry. Sunday brought the extended family to London and we had a beautiful and intimate service in The Lady Chapel at St Saviours. Thanks Nick Russell and the gang for your help and support. It was appreciated by all of us.

So what will this week bring? Monday is more ECP at Guys Cancer Centre and Tues is a day at Kings seeing the nutritional nurse and the Haematologist. And Weds I get to be away with my sisters and families for a bit of R&R and more birthday celebrations.

Let’s hope the sleep I’m used to returns tonight to help me get through yet another busy week.

Whatever you are up to this week I hope you find it has some light and love in it.

Interventional Radiology Again

Had a wonderful few days in Glasgow at the British Society for Haematology conference. It was great to listen to these inspirational clinicians who have dedicated their lives to help people like me. It was also really good to represent MDS UK and advocate for the amazing work that this small but mighty charity accomplishes.  

I didn’t get home till 11pm last night. I had a quick sandwich and  then hit the sack as I had to be up at St Thomas’ the next morning. 

I set my alarm for 6am in order to take just the essential medication with a small mouthful of water. It made me feel really sick. I went back to sleep for another couple of hours and woke feeling exhausted and nauseous as well as having a pain in my tummy. 

The drive to St Thomas was slow. The London traffic was heavy and the rain was relentless. I was slightly delayed getting to the hospital but I wasn’t fussed about it. What can you do any way? 

I’ve been here for 90mins now. They have changed me into a gown and tried to cannulate me twice.  The first one tissued and the second one disappeared. I get so fed up with having to fit into hospital protocols that don’t work. I won’t have sedation any way so why starve me and deprive me of much needed fluids and try and stab me when I won’t have the medicine any way. 

I haven’t seen a doctor yet and I really want a conversation in order to ensure they don’t keep putting me through this. Fingers crossed they come up with a better plan that enables me to access my treatment without any hassle. 

Most of the time I’m try not to be grumpy. What’s the point. It just makes the situation worse. Every now and again I get fed up with it all. When you live with constant nausea the last thing you want or need is anything that makes you more nauseous. Taking medication on an empty stomach is not a good thing and makes me feel really rough. Then sitting around a cold waiting room for hours when you’re in pain and can’t take anything doesn’t help you either. 

Let’s hope the day proves fruitful and I get a cuppa and some biscuits soon. I’m sure that will return the smile to my dial!