It’s tough going

I don’t very often feel low but I must confess I am feeling a little down. At first I thought it was because it’s my birthday next week and I can’t be with the family and friends that are important to me. On further reflection, I don’t think it is that.  I think it’s deeper. 

When the clinical trials were taking place for the vaccines they were unable to test the efficacy in the blood cancer community as that would be unethical. Also those of us that have had a transplant also have the additional problem of being on immunosuppression drugs and having a wonky immune system that doesn’t respond as others do. 

The research that has been carried out since has shown that people with solid tumour cancers respond well to the vaccine but blood cancer sufferers don’t respond as expected. This means we have to continue to shield. We may have a good response, we may only achieve a small response but we will never cope well with infections, especially one so deadly. 

In the next few weeks I will have been shielding and leading a much more limited life for a year. I feel that in general, I’ve coped very well. I’m made that way. I just take it on the chin and get on with it. However, the thought of this going on indefinitely is almost impossible to bear. 

I’m gregarious by nature. I love new experiences, meeting new people, socialising, singing, being close with my family and hugging my grandchildren. Since the diagnosis of blood cancer 20 years ago, I’ve lost so much. My fitness and ability to enjoy and love playing sport. Riding my motorbike. Working. Dancing. Walking in the woods and cliff tops. Staying up all night because something fun came up. The list is endless. Because I’m me, I’ve adapted to all these things but sometimes enough is enough.  I wish I could scream but it’s not in my nature.

On top of this relentless isolation and boredom at times, I’m having a flare in symptoms. My skin is really hot, dry and itchy as is my mouth and eyes. My nose is also really dry and burns. My hands and feet are unusually hot and tingly. My legs are weak and shaky. I have burning pains down my biceps. My joints feel like they are grinding bone on bone and I have pain under my rib cage and around my back. My throat is raspy and dry and quite hoarse. I’m also breathless and wheezy. 

My consultant knows me well and increased my steroid dose. This made me feel a little less stiff but added in some sweats. I’ve been taking them for around 6 weeks and I’ve started the weaning process again. This means the symptoms are flaring once more but I can’t keep taking such large doses of steroids. They are so bad for the rest of me. My bones have been affected, as have my adrenal glands. Sometimes I wonder if I’ll always have this yoyoing relationship with steroids. The other thing is vaccinations are less effective if you’re taking large steroid doses. It’s like I’m damned if I do and damned if I don’t. 

One of the other things I find challenging is the relentless pace of emails and possible zoom meetings and conference calls and teams. I can’t keep up with it all. So much of it is crap and it can be hard to see the wood for the trees. There are some things I really want to participate in and others that I just don’t want to know about. I don’t concentrate so well since the transplant. I can be forgetful. I see a service or group meeting and think “oh that will be good” by the time it comes round to it I’ve forgotten as a load of rubbish has come in on top of what I wanted and distracted me from the thing I wanted to do in the first place. I have over 1200 emails to sort through. Sometimes I don’t open one because I know it requires me to do something and then it gets buried. By the time I then find it whatever it was telling me about is over and I’ve missed it. It’s so bloody frustrating. I only recently found out that I missed a load of good stuff and community week with my friends and colleagues in the Iona Community. 

When I was working, I had a very strong work ethic. Nothing was too much trouble and I always managed to achieve what I wanted to and then some. I could push through the tiredness of the cancer and sometimes work 14 hour days. As long as I had my days off, I could keep going. Now it’s like I have sleep incontinence. It’s hard to express the fact that I can’t even keep up with my inbox. I don’t know what the solution is either. 

It’s also hard to be on zoom so much as it almost requires more concentration. I get worried I’m going to fall asleep on camera. I also have to remember these days to put my teeth in too. I find that quite a challenge. Out of everything that’s got messed up over the years losing my front teeth is really hard. 

The final insult lately is even on the really odd occasion that I go out for a “walk” for my mental health on my mobility scooter, things are a challenge. My scooter has become unreliable and doesn’t always work. Sigh...

It’s not like me to moan and groan like this. I guess we are living in exceptional times. Most people are hoping that by the summer they can get back to normal. For some of us that may never happen. Please spare a thought for us and that a way is found to protect us too.  When you all move on, remember us who will be left behind. 

Wonky immune systems don’t go with pandemics

It’s taken me a while to harness my thoughts for this New Year blog. My mum would always ring me after midnight on New Years Eve to wish me happy New Year. She would quickly follow that up with, “thank God that years over” I would try and remind her that there were good times in the year that had gone too and that she shouldn’t wish her life away. It made no difference and the whole routine would be gone through again the following year. 

I have never wanted to close the door on a year before. I’ve always been an optimist and not just a glass half full person either. I think you can fill the cup no matter how much is in it and count your blessings. I obviously don’t take after my mother! Yet this year for the first time ever, I am happy to leave 2020 behind. I bet there are many who feel that way too. I could not have imagined that for most of this year I would not have been able to hug my grandchildren or even be in the same room as them. That I wouldn’t be able to go on trips out with my sisters and brother or daughter. That I wouldn’t be able to treat my long suffering partner to a holiday or meal out. That I wouldn’t be able to travel to Ireland to see family and friends. That I would have to wear a mask everywhere I went and even clean my online shopping with antibacterial wipes before I could put it away. My how times have changed. 

Sadly my beautiful Aunt Dorothy and her husband the lovely Uncle Richard died in the early days of this awful pandemic. Then just this week I heard the sad news that my old friend Geoff and another friend Pam had died.  Today I learned of a teacher in Lewisham and an 8 year old from Bristol dying. These unnamed individuals are indicative of the complexities of our situation. Gavin Williamson and Boris Johnson both stated this week that our schools are safe places. How can that be when they don’t even wear masks in the classrooms but only in the hallways? This teacher and child had no pre-existing illnesses according to reports. The exceptional times we are living through call for exceptional measures to be taken. I am a huge advocate for good education but not at the expense of someone’s life. All the kids are in the same boat. Put the resources into helping those that need it to access remote learning for now   Also maybe making the whole cohort repeat a year. Kids are resilient and will bounce back. The only ones I worry about are those whose homes are war zones. I know what it’s like to grow up in a house that’s not safe and find sanctuary in school or with external agencies. We need to get better at picking these kids up and safeguarding and supporting them. 

I told you about how many people I know who have died from Covid. I also know a further 2 who were hospitalised and another 4 who had it and recovered at home. We all know people and sadly many of us have not been able to attend funerals due to restrictions. My heart goes out to all who mourn, especially my cousins and friends. If I can help any of you in any way, please get in touch. Just for now know that I’m holding you in the light during this really tough time. I wish I could do more. 

Despite all that angst and sadness, I choose to live in hope. Hope that we get a fair and effective vaccination programme for the world, not just the rich countries. That scientists continue to study this awful illness and maybe find a cure. I also hope that others assume their collective responsibility. I have safe guarded my fragile health with a passion for the last 20 years of living with cancer. Now, my wonky immune system is reliant on everyone else doing the right thing. It scares me when I see protesters outside St Thomas’ hospital saying that Covid is fake news. They shout and scream about their liberty and think it’s all about them. If any of them had a child with leukaemia they would not be able to visit that vulnerable child without wearing a mask. I’m sure they would do anything if it saved the life of someone they loved. I can’t get into the mindset that would not extend the same to anyone who is vulnerable. 

Covid tentacles reach into so many aspects of life. For example I have a small skin cancer on my back that was due to be cut out this week. It’s been indefinitely postponed because the outpatient dermatology nurses and doctors have all been moved onto the medical wards to free those staff up to deal with all the extra Covid patients. My skin cancer is not serious and I am not a worrier so that is fine. Sadly though there are others who will be effected badly by these delays. My heart goes out them. 

Regular followers of mine will know I’ve been have phototherapy twice a week to treat my extremely itchy damaged skin. It was just beginning to give me a tiny bit of relief. Sadly that too has been stopped and my skin is really itchy again. It’s like electric ants crawling all over me and if I dare scratch it makes it’s 100 times worse. 

My haematology appointments continue as does my monthly IVIG which is given over a couple of hours in a drip. I can see the hard working team around me constantly looking at ways to keep us all safe and ensuring nothing gets missed haematologically.  It’s a thankless task as some can’t see beyond their own irritation. As an old timer, I see things differently. These medical teams are working flat out and they have my support and respect. 

This year, like every other, I’m sure, will be full of loving family and friends. We will just connect differently for a while longer. There will be fun and laughter and there will be trials and tribulations. Some relationships will deepen and some will wane. There will be fantastic new experiences and there will be monotony at times. Sadly there will be more deaths and there will also be some incredible survival stories. 

All of this is life, not just the good bits. Pandemics have happened before and they will happen again. We just need to get better at dealing with it. They say wise people learn from their mistakes. I think really wise people also learn from other peoples mistakes. So let’s all make a commitment to make the most of whatever life throws at us this year. We can’t change what happens to us but we can change our attitude. Today I’m sending out some love and hugs and encouragement for us to go and greet the New Year with gusto. Have a good one people. 

Here’s a prayer for the praying types too. 

Xx

O God,

make me discontented with things the way they are in the world,

and in my own life.

Make me notice the stains when people get spilled on.

Make me care about the slum child downtown, the misfit at work,

the people crammed into the mental hospital,

the men, women and youth behind bars.

Jar my complacency, expose my excuses,

get me involved in the life of my city and world.

Give me integrity once more, O God,

as we seek to be changed and transformed,

with a new understanding and awareness of our common humanity.

-- Robert Raines (adapted)

Blood cancer awareness month and 20:20 Challenge

 September is always blood cancer month. It seems apt that my body decides to give me a reminder of how fragile my health is at times. You may remember I had a couple of fairly good weeks and was able to significantly reduce some of my medication. This pleased me no end. Then I gradually started to feel crap again. 

I was in more pain than usual. My hips are awful and really ache. My wrists jolt me every now and again with a sharp pain. Same goes for my ankles and knees except they also really ache. 

Then I started to have pains in my stomach and my appetite was lessening. This soon turned into a mega vomit of undigested food. The vomiting went on and on. At one point I was being sick every 2 hours throughout the night. In the end it was just dark green bile. I felt dreadful. I couldn’t eat. I couldn’t really drink and I virtually just slept for 24 hours. 

I gradually started feeling better but still have bad muscle and joint ache. My Reynauds Syndrome has started up again. My skin is also incredibly itchy to the point that wearing shoes and socks is a challenge as they irritate my feet and make them itch. 

I would’ve never believed that an itch could be a medical problem. My partner was giving me a shoulder massage as my shoulders were hurting and I had a headache. It felt really nice at first and then all of a sudden the itches started where my back had been rubbed. It was like a tens machine had suddenly come on and was buzzing with loads of fire ants all over my back. It was AWFUL. It was an hour before we managed to calm it all down and I could sit still once more. 

I try to not scratch when I’m awake but is really hard not to. I do pinch, slap or rub the itches. I also fidget and tap. I’m normally such a still person that people often look at me sideways. I have loads of different lotions and lots of medications for this problem. When it’s having a flare, it seems nothing much helps. 

The vomiting has stopped but I still get a lot of reflux. This goes on day and night. Last night even though I was sat up, I kept waking up with acid from my stomachs in the back of my throat. It makes you cough and sometimes choke. It also tastes awful and burns. 

When you have cancer and have had such serious and extensive treatment, it seems your body is never quite the same afterwards. It’s so difficult having to adjust to living in what I feel is a 95 year olds body. I just hope that 95 year old is having fun with mine. 

My appointment with the haematologist went well in as much as most of my blood results were good. There were a couple of tests that showed something had been or was going on. My neutrophils and CRP was raised. They couldn’t, other than that, work out why I had taken so many steps backwards and had such a rough time. 

I also saw the lovely new physio. I explained to Shana that I hadn’t been as diligent with my exercises due to feeling unwell and also a possible slight groin strain. She was ace and totally supportive. I also explained my mobility scooter had broken and she said Macmillan might be able to help pay for it to be fixed. I’m not so sure as I’ve asked for help from them before and even though my partner receives the state pension and I’m on ESA we have too much coming in! Pensioners have it hard when it comes to looking after disabled partners. If you receive your pension, it means you can’t claim carers allowance even though all the care you give to your partner saves the NHS and local authority loads of money. It’s just not right. 

As well as seeing the lovely Shana I also caught up with the equally lovely Katie who is the dietician. I’d completed a food diary for it but she only received 2 of 7 pages. She was good about hearing what I was saying and put no pressure on me to push more in while I was recovering. We can see more about where I’m at next month. 

At present we have some fairly nice weather. That means I can still see friends and family because I can sit out in the garden with them. Heaven only knows how I’m gonna get through the winter. I’m thinking about getting an awning to protect from the weather. Then I can put a patio heater underneath it. Has anyone else done this? Is it expensive? 

Yesterday I had a lovely time. My older sister and brother and their partners came over and we sat outside for hours. These are 2 of the 3 siblings that I met on the TV show Secrets in my Family. This is the link and password to the show should you wish to see it. 

https://fmebrandmanagement.box.com/s/3hz6o4ge1drxg5evx2aswqskba65e2bp

 

Password: sft17

I’m so blessed to have met them and for us all to find healing from the challenges our different childhoods had. Thank you Sandra, Linda and Russell for welcoming me, Gail and Dawn into your lives. I’m so pleased I was brave enough to find you. 

One of the things that’s been nice in between my last blog and this one is that I was able to take a funeral for a family that I did another funeral for just before lockdown. It was hard not to be able to do some of the things I would normally do but it was also good to be able to be alongside them through another family bereavement. Funerals are still being kept to a limited number of people. In this case it was 20 people. This means an awful lot of people can’t come. I suspect we will end up needing to have lots of memorial services in order to give others the chance to say goodbye. 

As I sit here and write this I have an awful pain under my ribs. I also have a bad ache in my right calf. My hips are on fire. My left ankle aches. My back, arms and torso is very itchy. My mouth is so dry that my lips sometimes stick to my teeth and my tongue sticks to the roof of my mouth. My eyes are blurry and sting and are very dry. I also feel very bloated and nauseous. The list of things we have to put up with is endless. 

Sadly because of not being so great I’ve had to go back on some of the medication I got off. It’s always a rollercoaster and I never know when I’m gonna have one of these dives. It can make planning for anything in advance difficult. However it doesn’t stop me planning because it’s always good to have goals and dreams. 

In my last blog I mentioned how worried I was about my eyes. Having been to the optician after suffering a very brief incident of partial blindness, I was told by the optician that I had moderate cataracts in both eyes and dot haemorrhages at the back of my eyes. I take most things in my stride. I have dealt with my mortality and death holds no fear for me. I’m lucky that I’m not often stressed and I’m not a worrier. When it comes to my eyes though, I am more cautious. The reason for this is I only have one eye that works. My left eye sees light and dark but even the large letters on the sight test are now wiggly blurred lines that I can’t make out. 

I asked my GP if I could go to Moorfields. The medic that phoned me about it was not someone I knew. She questioned me and was quite abrupt, initially she was saying I didn’t need a referral based on what the optician had said. I told her about the episode of temporary blindness and she said “you didn’t tell me that” to which I replied “you didn’t ask”  I’m so used to dealing with medics who know me well and know I wouldn’t raise something unless it was a real issue. In fact I’m more likely to put up with it for too long before I mention it. This woman wasn’t very empathetic and seemed a bit miffed at having to do the referral. It’s a shame but maybe she was just having a bad day. She did refer me and Moorfields were great when I finally got to the right place. 

When I arrived I went into the main building, then after queuing to get in, I was sent to another building over the road. After that I was sent back to the original building and had to queue all over again. When I got to the front of the queue I was told I couldn’t come on till 3pm as the letter said my appointment was 3,30pm. I explained I had received a call from the doctor asking me to come at 1pm. The man on the door said he had to go by the letter and wouldn’t listen to me or my partner. In the end another member of staff let us in. Two things are wrong here. Firstly no one should be sent to the wrong place, yet alone someone with a mobility problem. Secondly staff should listen to what the patient says to them. Why would anyone turn up 2.5 hrs early for an appointment? This just shows that not everyone has caught up to the fact that patients have a voice now. It’s also why we need patient advocacy for those who are not as assertive as I am and need some help navigating a confusing system. 

When I got to see the doctor she was lovely and reassuring. She explained the cataracts would need doing but not just yet. I said that’s what concerned me because I know it’s a straightforward procedure but with my wonky immune system, the chance of infection is higher. She said not to worry and they would take good care of me when the time came. She also said that whatever the optician had seen was now gone and the haemorrhages had been reabsorbed. I was relieved by this but also slightly perturbed. If I could afford to pay for it I could have cataracts surgery now. Instead the NHS says I have to wait until the symptoms start getting in the way of my quality of life. How annoying is that! I don’t do private medicine. I think it’s wrong that if you can afford it you get treated ahead of those who aren’t so fortunate. It’s just not right. Oh well, no point having principles of they don’t bite your bum from time to time. 

Thanks everyone for continuing to read about my exploits and recovery from cancer and a transplant and it’s complications. If you have any questions or comments for me I will happily answer. I appreciate all your messages and virtual support. It helps to keep me as sane and cheerful as I am. 

I also remember all the others I have journeyed with who sadly never made it. As it’s blood cancer awareness month, I would like to dedicate this blog to all those brave souls. 

Music is the language of the emotions

 Life in our strange new world continues apace. I’ve been doing alright on one level. I’m still managing to stay off some of the most toxic of the medications that I’ve been taking for years. My consultant agrees that stopping some of the tablets has been better for me than she anticipated. Let’s hope it continues that way.

I had a very strange situation recently. I had not long been out of bed when all of a sudden it seemed like I had stared at a bright light. I couldn’t see properly. I looked in the mirror and all I saw was from my eyebrows and above. I couldn’t see my face or shoulders even though I should have been able to. I only really have vision in one eye having been born with a lazy eye. Not being able to see really freaked me out. It didn’t last long and went as soon as it had arrived but it left me very disquieted. As a result I made an opticians appointment. 

I saw a very professional and thorough young woman. At one point she kept looking in my eye and going back to the computer. She then asked me if I was under the hospital for my eyes. I explained that due to the transplant I had very dry eyes probably as a result of GvHD and was given drops from the ophthalmologist to treat this. She then told me I had moderate cataracts in both eyes and I also had dot haemorrhages in the back of my eyes. She said this would need further investigation. It seems this type of haemorrhage is often seen in diabetics and in people with high blood pressure. I have neither of these. The mystery deepens. 

As you can imagine, having only one working eye, I am anxious about needing anything done. I know the cataracts will need doing but it scares me and I’m not easily perturbed. It’s rare that there are complications from cataract surgery but they do occasionally happen. The optician said to me that it wouldn’t matter what lens was put in my glasses, they wouldn’t be able to improve things. I know that eventually I won’t be able to see well enough to drive or read. It would be good to get it sorted before that point. I think I might ask for a specialist referral o Moorfields as they have such a brilliant national and international reputation. 

Life with Covid restrictions continues to be hard. According to government guidelines, if I was well enough, I could return to work. According to my consultant I should continue to be cautious and shield. I know who talks most sense, so I’m following my consultants advice. Myself and my long suffering partner continue to entertain out family and close friends occasionally but only in the garden. I’ve no idea what we will do once it’s too cold to be outside. Maybe we will invest in a patio heater. 

I had been feeling a little better but the last week I’ve felt tired and washed out again. You have to keep taking the rough with the smoothie I guess. Let’s hope it’s only another blip. 

One lovely thing I had the honour of doing was to help my newly found brother and sister-in-law renew their wedding vows after an amazing 40 years of marriage. They did this in front of their nearest and dearest only instead of the lavish party they had planned due to Covid. I was so happy to play a small part in making the day as special as possible. 

This week my eldest grandson gets his GCSE results. I know he will do well. My heart goes out to all those young people who have not had an easy time of it and are anxious about their results in this weird year. Let’s make sure we surround them all with love and light. 

Many of you may be aware that I record an audio diary for BBC Radio Kent that is broadcast every Sunday morning. I am about to record a segment for them which explains how I experienced my first sense of vocation. I was a young 15 year old and had been taken on holiday by my church to a place called Lee Abbey. During one of my visits there I was stopped in my tracks by a beautiful duet version of the hymn When I survey The Wondrous Cross. It came from a musical called Saints Alive and was written by a man called Roger Jones. The duet is hauntingly beautiful with fantastic harmonies. I went on to sing it in many concerts. The last verse is the powerful bit that got me: 

Love so amazing so divine

Demands my soul, my life, my all

Demands my soul, my life, my all. 

What I realised, as an abused and troubled teenager was that if I lived my life in that divine love, it would take my soul, my life and my all but I would be happy. I knew in that moment that God wanted me to work for her. Trying to explain a sense of calling is a hard thing. It’s like an inner voice that goes on and on and because I didn’t listen so well that inner voice went on for 20 years until on another holiday I had another profound experience. This time I was on the island of Iona in the Inner Hebrides of Scotland. I was in my 30’s and as far as the world was concerned I had made it. I had a great partner, a beautiful home and a good job. Despite all of this I was disquieted inside me. As I wandered around Iona on a pilgrimage, I realised that d3spite all the material wealth I had  and despite all the loving relationships I was not going to be happy until I put myself forward for possible selection for ordination training in the CofE. I remember saying to God as I wandered around “Ok mate, I’ll do it, just to prove you are joking me because how can you want this unorthodox street urchin as a priest” I was really shocked when I got through the process and remember when I was ordained closing my eyes at the laying on of hands and feeling a deep peace that I was finally where I was supposed to be. 

Here’s the YouTube link for that beautiful duet if you’re interested. 

https://youtu.be/A_rjHN_DAj8

In order to include the song in my blog and audio diary, I looked up Roger the composer to make sure I had his permission to use the track. I was pleased that he responded to my email very promptly and we had a lovely chat on the phone. He is very happy for me to use his words and music. 

Music and the love of God expressed through the kindness of other people helped this street urchin survive the difficult start in life I had. In fact they still do. I always say I stand at the point where the love of God meets the mess of the world. That would not be possible without living through and learning from all of the experiences I have had to date. That’s why I firmly believe that your present circumstances don’t determine where you can go, they merely determine where you start. Where you finish is up to you. 

Fighting cancer & covid

Hello everyone. I’m so sorry it’s been a while since I’ve put out a vlog/blog. I’ve been feeling crap! Well that’s not quite accurate. I had a couple of days, and I do mean just 2, where I felt the best I had in years and then the walls came tumbling down and I plunged backwards once more. I had a headache from hell. It was like a cactus and as growing out of my head. Then I had to dash to the loo one night and sit down very quickly. While I was “seated” I knew I was also going to throw up. I had a slight temp and I felt dreadful. Normally when I feel bad I just sit or lay very still. That makes things a bit more bearable. This time that strategy didn’t work. I was like death warmed up. I would have happily taken a large dose of sleeping tablets to knock me out till whatever was going on had worked it’s way out of my system. This intense feeling of being that unwell lasted a week. Then I gradually started feeling better but only back to my base level which is not brilliant. There has not been any further sign of those 2 good days. Sigh! It’s like torture. It’s almost like I had a small taste of my old life dangled in front of me, then it was gone. It seem cruel to me but it’s also something to aim for and maybe next time I’ll have 4 days. I just hope and pray one day I might get my old life back for good. One of the things I’ve been thinking about lately is the fuss that some people are making about wearing a mask. Please don’t think that your civil liberties are more important than my life. That’s what is really being said because if I got Covid I would likely die and so would many others like me. The problem is we are invisible amongst you. You can’t tell who the vulnerable people are around you. Please don’t put us at risk. No one would question visiting a baby ward and having to wear a mask. Well those of us with blood cancer or who have had bone marrow transplants have the immune systems of babies. We need to be protected. Please take your collective responsibility and help us carry on living. I hope you like this vlog which is dedicated to Claudia, Dave, Jean, Evie, Nicki and all fighting to stay alive during this tough time. Stay safe and take care Xx https://youtu.be/T_OOB7_7wLg

Puke Fest

It’s been a while since I’ve blogged. Apologies for that. We are all living through such strange times. 

When I last wrote I was an inpatient. I was in that tiny room for nearly 3 weeks. It was so lovely to get home. Often it’s the little things that make a difference. For example being able to pee in peace and not have to do it in a jug and measure it and write it down. In my experience haematology wards are obsessed with all bodily functions not just blood. Lol

I was quite weak and wobbly when I got home but delighted to be there. 

One of the changes the consultant made before I left was to stop my imatinib (chemo tablet) This change stopped the throwing up immediately. I was relieved on one hand because throwing up is not nice, but I was also concerned because I feel the GvHD (graft verses host disease)  was getting worse. 

I had a good first week at home just getting some of my strength back in my legs by walking up and down my hall. It’s very hard to keep your legs moving in those small rooms. These days my legs are so weak and I certainly don’t want them to get any worse. 

I went back to outpatients after a week. I needed to have my IVIG infusion (immunoglobulin therapy) I was intrigued to find out how my electrolytes were doing as they were being replaced virtually daily when I was in. I was amazed to learn they were all in the normal ranges. Oh my days. The consultant says she thinks it was the imatinib. I was well happy about that. I was sent home and told to come back in a month and have telephone or email contact in between if needed. 

Before I left I had a long session with the dietician. Katie wanted me to increase the amount of protein in my diet. Alongside being assured by me that I would increase my intake of protein, Katie also wanted me to try a protein supplement. It came in the form of Jelly or a drink. The jelly was really sweet and unpleasant in its consistency. I knew I needed to keep going with it though and managed the 4 jellies by only having half each time. Then I tried the drinks. These were meant to go in my PEG-J tube so that I didn’t have to taste them. I poured one out only to discover it was very thick and sticky and not something that could go down my PEG. I’ll have to get in touch and explain. I think Katie will be disappointed. 

The other thing Katie wanted me to try was a 12 week probiotic course with a certain product. The liquid could go in the PEG this time as it was water based and wouldn’t clog the tube. It smelt foul. 70 mls was to be taken in the morning on an empty stomach. I did this and then got on with my locked in day of chatting to neighbours and FaceTiming family. That night in bed I started getting really bad reflux which tasted of the medicine. I kept trying to prop myself up. Then I was woken up on 4 separate occasions to sit on the loo. Not very nice when you are really tired and meant to be in bed sleeping. The next morning I started to projectile vomit. It was so violent that it splashed back on me and covered me. I had to call Maggie to help me whereas I would usually deal with these sort of things on my own. I carried on being sick all day. It got to the point that I couldn’t even hold an ice cube down. I felt dreadful. I had a headache and a slight temperature. Poor old Maggie was really worried about me and kept coming up and emptying my sick bowl as in the end I had no strength to get to the loo. 

That night I managed to sleep despite having spent the day asleep in between throwing up. The next morning I felt better although drained by the previous 24hours. I managed to get up but that was about it. I couldn’t even manage to get dressed. 

The next day I started to feel human again. I was able to eat and drink a bit more and get my medication in easier. I still felt rung out and shaky but so much better than before. Maggie did some research on the product I had taken and it seems that some people do react like me. There were of course many people it had really helped but regularly dotted along with all the positive reviews were individuals who had really horrible reactions to it. 

Oh dear! I hate having to go back to Katie and needing to tell her that neither of her bright ideas have worked. She is a great person to work with and really thinks outside the box. I hate having to disappoint her. I’m always willing to try new things or new medications/treatments but sometime the “cure” is worse than the condition. 

Before this horrible reaction I had a telephone consultation with a new member of the haematology team. He is a psychiatrist and he joins a couple of psychotherapists to extend and enhance the care delivered by this much needed aspect of the service. 

I am someone who really believes in counselling and talking through your issues. I think well-being and quality of life issues for long term sufferers of cancer and it’s treatments are vital and I would encourage anyone to engage and accept help if it’s offered. You have to be strong to admit your vulnerabilities. It’s definitely not a sign of weakness. 

In my case what has happened is that someone, maybe who doesn’t know me so well, has wanted a psychological evaluation to see if that is playing a part with my gastric problems. The fact that I never had these problems before the transplant seems to have been lost along the way. I could’ve been defensive in my response but that wouldn’t be right. I was happy to be assessed because I’ve leaned that medics need to tick all the boxes when looking at complex situations where there aren’t any easy answers. 

Greg was a nice bloke and we had a good chat on the phone about all sorts and he concluded something which I’d worked out years ago and that is that I have a very low tolerance for being sick. That I am sensitive and thats how my body reacts. 

I’m pleased we had that conversation and it’s conclusion before I tried the new product for Katie. All of this can actually sometimes make you doubt yourself. It can also lead to feeling judged and not understood. That’s when it’s really good to have an objective opinion form wise people like Greg and Phil to help to get to the roots of what’s going on. 

My problem is where does it leave me? It’s like I’ve reached the limit of being messed around with. The last two medications and this food product have all made me sick. I’ve been on similar medication for many years and not reacted.  Why is my body now deciding to reject these latest treatments? Will I be able to tolerate any other treatments or is this as good as it gets? These are big questions. I wish I had a magic wand and could fix it. Instead I just have to grit my teeth and keep going. I have to focus on all the amazing and wonderful things I have in my life. I count my blessings that I’m still breathing and defying the odds. I’m happy to be part of my grandchildren’s life. 

One of my recent posts had pictures of how hard life has been and how challenging it’s been getting through so many bouts of sepsis and everything  else. The pictures attached to this blog show many of the things I’ve done since being diagnosed. Life doesn’t stop at diagnoses. All of us have to make alterations as we get older. Those of us that develop a serious illness end up doing this earlier and in a more compact way. 

I hope the pictures give you the courage to really live until you die not just exist. I can’t wait for lockdown to be over and for me to be able to get up to some mischief. One of the things I fancy is doing the longest and fastest zip wire ride. You lie in it facing forward, a bit like superman. It’s about a mile long over an old quarry in Wales. 

Whatever it is that you have your sights on, I hope they come your way soon. If not and things are getting tough, don’t be afraid to ask for help. Isolated and shielded doesn’t have to mean disconnected. 

Covid robs Rebel Rev

I’ve been stuck in this small room for two weeks now and I’m definitely going stir crazy. I see no smiles all day because people are all masked up. I can’t have visitors from home and the days just drag. Thank goodness for Netflix

Here’s a vlog giving you a tour around my current living quarters.

https://youtu.be/02WgVn2EY-o

Today is a sad day. It was my uncles funeral and I’m gutted I couldn’t be there to honour him and support my cousin. What makes this so hard is that my lovely aunt died yesterday. She obviously didn’t want to be without him. My heart goes out to my cousin who has lost both her beloved parents within two weeks of each other. I’m so frustrated about not being able to do what I’d like in terms of helping out.

I am also very frustrated by the situation in the hospital. Last week I was told I was having a PICC line put in. At the time I reminded them to mention the stenosis and problems I’d had with having 6 previous hickman lines. The nurse cane and said the porter was on his way. This was 45 mins earlier than expected so I was rushing to finish my daily ablutions and take my meds. Then a nurse came back and said they had just phoned and said they couldn’t do it due to my compromised anatomy. Grrrr. This is just what I predicted.

When Manu the lovely doctor came to see me he said they had now booked me in for the hickman lime for the next day. He said the team would have a discussion as they don’t think that’s the right way to go. It’s a huge problem in some respects. My veins have had it so they do need to get some access to me. Heaven only knows what the solution is.

My phosphate is still needing to be replaced every other day and sometimes daily. They don’t know why I’m not maintaining phosphate so need to try and work out what the problem is. I also seem not to hold on to my calcium just now.

The other weird thing is my BM (blood sugar) gets taken in the morning sometimes. Today it was 2 one day it was only 1 On that occasion the staff made me have some glucose gel. Yet when you do a dip stick urine test it had glucose in it. That normally happens if you have too much globose in your system which is the opposite to the morning problems.

It’s wonderful that our bodies are so complex. It’s hard though when so many bits and pieces are wrong but there is no clear pattern to determine the problems.

It’s really soul destroying to continue to be stuck in hospital when I feel we are not making good progress and getting any answers.

The other issue that’s occurred is that one of my drugs has been misinterpreted. I take mirtazipine. It’s an antidepressant. I take it for it’s side effects, one of which is to create an appetite. Someone from another team has queried this depression and it’s been suggested that I see one of the team of counsellors to check in either the psychologist or psychiatrist. I said I’d do anything that may help but didn’t need psychological support. I did say I wanted a truthful answer to if my current physical state is as good as it gets. If it is, then I will do the work to psychologically adjust. I saw Phil today who is one of the psychologists. I’ve seen him in the past as I’ve come to terms with my diagnosis. He is a great bloke and really good to see if you hit a bump in the road. There was one point where I did feel
depressed and I went to see him. He checked the medications I was on and it turned out to be one of the drugs that was making me feel flat. He spotted it and advised me to change the meds and I was back to normal quite quickly. I trust him and appreciate his insight. Today he confirmed that I was psychologically robust and that wasn’t a problem contributing to my current predicament. If they keep me here much longer that may change. Lol.

I know some of my friends and acquaintances are medics. Would any of you have a clue as to what might be causing me to not hold on to my phosphate and calcium? Any ideas would be gratefully received.

I’d also like some suggestions for a project I could take on. I’m bored and definitely need some stimulation. Any suggestions?

https://youtu.be/02WgVn2EY-o

Thanks for all the kindness and messages. I am with you in spirit even when I feel so far away. Take care and stay safe. Xx