What does Rebel Rev have in common with the film Aliens?

Here’s my latest update for those who like to follow my story.

I’ve now been in hospital for 2 weeks. During this time I have had 2 CT scans, and  2 MRI’s. In the morning I’m having an ultrasound and I’ve also had 2 chest xrays. I am so lucky for living where we do and having this centre of xcellence to treat me as well as a free NHS. Sometimes when I read some of the comments on the American site, I wince at the comments asking what insurance will pay for and where you can go without insurance. One post was so sad, the man was spending his life savings on treatments when it was meant for his recent retirement. Everything he had worked for was going to go. How sad is that? My heart goes out to them all.

I know there is a huge financial burden just from living with the illness. New glasses every year mostly, clothes for your changing shape or to keep you warm in the winter or covered from the sun during the day. Heating is on more often too. I’ve had to buy 3 storage units for my feeds, medical equipment and medication. My car is bigger to accommodate my scooter so that attracts a large down payment. The Motability scheme pay the rest and they are great. It’s just that down payment that’s a struggle. I can adjust though and I have enough. I am not poor by the worlds standards and I count my blessing for that. I’m also not rich these days either.

Getting back to all those tests. When I had my abdo MRI I had to put a beaker full of sticky stuff down my PEG followed by a big jug of water. Half way through the water I knew I was going to be sick. I was in the cubicles outside the mri rooms and totally alone. I could see a bin opposite me but thought that a gross idea. I eventually managed to find a sick bowl having scanned the room. The staff came out and found me puking. They were very good and very attentive from that point of view. The results showed some inflammation and other bits and pieces so they say it needs further investigating as they don’t know what it is just now. Story of my life.

I went back the next day to MRI and this time there was no contrasts or medicines of water jugs. What wasn’t so good was going in head first. When I leave my room I have to wear a mask. I already had a temperature. They then put earplugs in then ear defenders over them. Your head is held fairly securely in a brace and then they put a bracket over your chest and shoulders. I do not suffer from claustrophobia. Even I found it hard going. Once in the machine, your nose is inches from the ceiling! I was in the machine about 40 mins. I started to sweat and had liquid pouring down my back. Not a pleasant experience but hopefully it won’t need repeating as this one came back normal for a change. Lol.

I didn’t make it home as planned before because I spiked a temperature again. I was on regular paracetamol and I still had a 39 plus temp. Luckily they changed the antibiotics and my temps been good since yesterday afternoon.

I’ve had some nice visits from my sisters and Dawn Marsh got some balloons to keep Kim Polito ’s company. It was also lovely to see Shirley Grout who came with some lovely cake sent by Sarah Grout . Thank you Sarah for that and the beautiful card. I loved them both. Then I was lucky to catch up with Alice Dunstall . Thanks for the most interesting up date and also for making a shoulder rub possible. It was good to catch up with Russell and Gill Grant. It’s incredible how many people we have in common. Gill please tell Russ that Janine who he knows through running club works in the same building as Gail and they have a little chat every day. Danielle Peach cheered me up with her tales of motherhood. Today I have seen my cousin Beverley Potter and my little sis Gail Thompson’s . We went for a “walk” in the park and sat and watched children and young people in a trapeze school learning their stuff. It looked like such good fun. I’d have loved to have had a go. Tina Probets came all the way from deepest Kent too with biscuits. I’ve been lucky to have such variety. I know some of you don’t like being tagged so I haven’t named.

The PEG nurse came today too. She said I’ve got over granulation tissue growing rapidly in my stoma. It’s very vascular so will bleed easily. She put a pressure dressing on to stop it coming out more. As it was, I thought it was similar to that seen in aliens where the creature bursts out of the poor blokes stomach. I joked about it with anyone who looked at it. It’s good to keep a sense of humour. Lol.

Yesterday I didn’t even get dressed and only just got out of bed. Normally every day I shower, dress, make my bed and change my quote. I did none of that yesterday. Today had been better but I feel a bit sick and my appetite is poor. Let’s hope I can sneak out again this weekend as that always makes you feel better.

As usual I wish you well with whatever you are carrying and I hope you find some love, light and laughter this weekend.

The changing nature of friendship

When you’re in hospital you have even more time to reflect on life than normally. All sorts of stuff goes through your head. Like I’m forever telling people you mustn’t believe everything you think. That doesn’t mean however, that you shouldn’t think through things, especially difficult things. 

The first time someone queried a problem with my blood was as far back as the late 80’s. I was anaemic at that time and my cells were large. My GP thought I might be drinking too much. I wasn’t and it settled down so was left. It all came back mid 90’s and I was given a ?MDS (Myelo Dysplastic Syndrome) diagnosis around 1998 and a definitive diagnosis from Kings, the centre for excellence for this rare cancer, in 2000. Strangely enough this was the same year that I started a 3 year theological uni course in prep for ordination. I certainly didn’t make things easy for myself. 

 Over the years life has been a challenge to say the least. It took me a long time to accept I had to change my life style to accommodate my more fragile physical being. I was forever pushing boundaries and over doing it. I also never told anyone about the cancer. If people noticed I was pale or looked unwell, I’d just say I had an unusual blood disorder. There were a few close friends that I confide in and of course my family. Initially though I tried to protect everybody. 

As my illness developed, so my lifestyle had to change. Sadly my social life has really suffered. I haven’t been able to go to so many things I’ve been invited to because I haven’t had the energy or because the other person had a cold or bug. Slowly bit by bit your world shrinks. I fight very hard to keep a broad perspective of life and for it not all to become about me and illness. The problem is cancer can be very dominant. 

Over the years I have had sepsis on 11 occasions. Each time there has been a 40% chance of death. Then 3 years ago I ended up in intensive care due to septic shock which carries a 60% chance of death. I really have cheated death on many occasions and beaten the odds. This is bound to change a person. It also has an impact on friends and family. 

Some people just can’t seem to cope with it all so well. Friendships drift and some people fall away. It’s hard. This of course is natural over a lifetime. We have all experienced friendships that wax and wane as we change. When a serious life limiting illness is involved this situation is magnified. It’s like some people can’t cope with seeing the sickness and pain. Others maybe miss the easy ness of the previous relationship and find the complications of hospitals and lengthy admissions too challenging. It starts subtly with less texts and calls. Less invites out. Then people stop commenting or liking posts on Facebook. Before you know it there’s nothing much left. 

The phenomenon of social media doesn’t help help. It gives an illusion of a connection even when it does not exist. People like me who blog and use social media are often misunderstood. People think they know all that’s going on because they’ve read my latest reflection. The problem is that’s only a small part of the whole picture. I still need contact with people and interactions and political debates and to know what’s going on in your lives. Just being in my own head is not enough for me. If you don’t respond to my posts or never comment, how can I feel connected to you. People, I implore you to just use this info to think about your connections with the people around you and how you are relating. If it’s months and months with no comments or contact in any way, is it a real friendship. It ok to admit things have changed and moved on. As much as I love social media it’s no replacement for real contact and face to face interactions. You can’t give a mate a gentle hand squeeze when you see their eyes going misty. You can’t put your arm around a text when you realise what’s not being said behind the smile. Friendships, like long term relationships, take work from time to time and need to be tended. If you value your friendships please invest in them. Don’t let things slide to social media likes as this can never replace the value of true and real friendships. 

Ok enough of my reflections and ramblings about the challenge of maintaining friendships. My health news for those who want to know is that I have some kind of fungal infection in my PEG. Haematologist need to decide what best to do having been given advice from the specialist PEG nurse. I haven’t had results of today’s bloods yet but yesterday I was told my counts are still flat. Last night and you can see it was late from the clock in the picture, I was given a pool of platelets. They call it a pool because it is not just the product of one donor. Platelets are used by the body to clot the blood. Mine have been steadily declining. I started at over 200 and now they are 18. I’m covered in bruises as a result. My neutrophils are still extremely low at 0.02 and my HB is declining again after the last transfusion and is now 80. I continue with the IV antibiotics for another 2 days then hopefully they will stop them. Fingers crossed my temp stays down when they do that. They are keen to do an MRI of my bowel too to check why I get this awful abdo pain at times. 

It’s like I’m in for a full service and MOT. Hope I pass with flying colours. I love the quote from the velvetine rabbit. After all these years of living with cancer my body doesn’t look like me any more. The shape of my face has changed due to the long term steroids. I have loads of scars from all the biopsies and lines and I’m incredible unfit and lacking in tone. However I am still breathing and I’ve learnt so much about life and learned to live deep in my heart. Despite the above reflection I have some great friends and a loving family. I have gained wisdom and insight and so much from being ill too so it’s not all negative. 

The other photos are of my latest bone marrow biopsy site. It’s the back of your hip that they screw into to get the samples. Then there’s the nice juicy platelets. 

I hope wherever you are and whatever you are doing that you have learnt to appreciate the life you have and not yearn for what you don’t. Be blessed people. 

A grateful heart

Well my week is going well as you can see. I’ve had another gift of life in the form of red juicy cells from an altruistic stranger. 

Later I saw the lovey Victoria. She is a great consultant to have in your corner. She said her and Henry had been chatting about various options for me including more steroids (groan). She said she wanted me to have a bone marrow biopsy (BMB) as my drastically low counts are perplexing and worrying. She also said she may want me to have an endoscopy. Oh what joy! She said that as they had hold of me they might as well look into what’s going on as she feels they may be missing something. She has referred to the gastroenterologist and re referred to a dermatologist because of the skin problems and itching. 

This afternoon a lovely registrar called Manu came and asked if it was ok to do my BMB. It turns out this lovely man is Buddhist but went to an Anglican school in Sri Lanka. He was so kind, caring, gentle and encouraging. As you can see from the picture of the tray, I had to have a few extra samples taken. Some of the needles were rather large too. He was very patient and gave plenty of local anaesthetic as well as time for it to work. He had to go in several times because of wanting the extra samples. Luckily he got what he needed. I’m relieved that’s over. They are a necessary evil for us haematology patients. 

The rest of the news is that I’ve grown some bugs in one of my lumens on the Hickman Line. I’m upset at the thought that it may have to be removed. They have taken extra cultures to confirm and will decide once those results come back. 

Symptom wise I’m the same as I was at home. My temp seems to have settled. I still itch and have gut ache and feel washed out but so far I  don’t feel worse for the treatment. Often the cure can be worse than the cause. I’d love to be at home but I know i need to be here for now. So it’s seems I’ve now faced down sepsis 11 times. Definitely beating the cat now in terms of extra lives. Lol. 

The day wasn’t all horrible tests. I also had a nice visit from Emma. It was good to catch up with another long termer. We made Victoria slightly lost for words when she came in. 😃

While I was lying on my bed putting pressure on the biopsy site to stop the bleeding another young doctor came in called Anna. She had a brilliant bubbly personality. She said she’d been asked by Victoria to refer me to dermatology but wanted to know from me what input and treatment if had so far. I was explaining about all the drugs and she thanked me for helping her to learn about something she didn’t know much about. What a great attitude. Her and Manu will go far because they know how to be alongside people and put them at their ease. It’s a long time since we had the culture of doctors being 6 foot above reproach. It’s so much better when we all work together for the common good. Patients need to be seen as partners in the healthcare relationship. My lot certainly know that and for that I’m grateful. Thank you Kings haematology and all the team past, present and future for all you do to solve the puzzles of our weird illnesses as well as keep us breathing and experiencing life. You have my gratitude and respect. 

Where angels fear to tread: Beautiful lyrics move Rebel Rev

Where angels fear to tread: Beautiful lyrics move Rebel Rev: I have good news and I have bad news. The good is I don’t yet feel worse for a change in my treatment. A week ago my counts were relatively...

Beautiful lyrics move Rebel Rev

I have good news and I have bad news. The good is I don’t yet feel worse for a change in my treatment. A week ago my counts were relatively stable when I went to clinic. I was feeling under the weather but coping. Then I went on Weds for my usual ECP at Guys and very quickly it became apparent that there was a problem with my bloods. My HB had dropped from 100 to 90 which is below the 94 threshold for ECP. Also my neutrophils were 0.00 and my WBC was 0.01. In other words absolutely no ability to fight infection. My lovely ECP nurses were very concerned and told me to contact Kings. At 10pm that night I had a phone call from the Registrar at Guys to ask me how I was. His name is Sam and I met him when he did a placement at Kings and I was in for 5 weeks. He is a smashing bloke and will go far. He asked me how I was feeling and said he would go and look at my blood under the microscope. He then said if the blood film showed lots of blasts I would need to be admitted that night, if not I could leave it till the next day. What a great service. People moan that the NHS isn’t 24/7. I’ve never known it not to be for serious issues. 

The next day I went to Kings and was reviewed by a new registrar to me, a lovely woman called Milly. She put me on GCSF (growth colony stimulating factor) It makes your bone marrow go into over drive and produce extra cells. It makes you feel a bit flu like and makes your bones ache. Sadly it hasn’t improved things yet. 

They were happy to send me home. On Friday I woke up and got sick. I felt a bit grim. My temp went up to 37.8 so I knew I had to go back to Kings. I arrived about 1.30pm. I saw Milly again who told me I’d have to be admitted. I knew that but it’s always a blow. They took a load of blood cultures to see if they can find the source of the infection. I had a chest xray and an abdominal CT. I had been kept in haematology till nearly 9pm as my room hadn’t been cleaned. I was getting hungry. At this point Maggie and I were taken to the ward but spent another hour in the Chemo side room because the room still wasn’t ready. This is where the impact of cuts and under resourcing is felt. The nurses get frustrated as well. Those in the day unit can’t go home even though their shift finished hours before because someone has to be with the patients. It can be very frustrating, especially if communication is not as effective as it could be. 

So I’m now on IV antibiotics. My temp was bad overnight and this morning but has been ok during the day. I still feel shivery and feel like I have a temp though.  My bloods are still way off and I have to have a blood transfusion tonight as it’s all significantly dropped since yesterday. My nets haven’t improved much either so I’m being treated for neutropenic sepsis. As long as they don’t need to give me the antibiotics that made me so ill last time, I’ll be happy. I guess nothing major will be decided till Monday. 

This admission I’m on a totally different ward. I’ve never been on DMU. All the nurses I’ve met have been lovely. The cleaners and catering staff are the same on this ward and Davidson next door where I normally am. It’s sonics to see them and they are all genuinely pleased to see me. I’ve always maintained that these long term illnesses change your relationships with the medics. You get to know them as people too not just professionals. 

Tonight I watched a beautiful and quirky British film called a Song for Marion. It’s about a dying woman and her grumpy husband and the unusual OAP choir she sings in. The following lyrics come from two of the songs in the film. They were so beautiful, as was the film, that I wanted to share them with you (even I needed a tissue!) I hope the poignancy touches you, especially those who are grieving. 

I will keep you posted but meanwhile please continue to pray or send positive vibes for all who work in the NHS and all the patients who are not as fortunate as me and don’t have people in their corner. 

Good Night my angle time to close your eyes,

and save these questions for another day.

I think I know what you've been asking me.

I think you know what i've been trying to say.

I promised I would never leave you,

and you should always know,

Where ever you may go I will never be very far away.

Good night my angel now it's time to sleep,

And still so many thing I want to say.

Remember all the songs you sang for me,

When went sailing on an emerald bay.

and like a boat out on the ocean,

I'm rocking you to sleep,

the water's dark and deep inside this ancient heart

you'll always be a part of me.

Good night my angel now it's time to dream,

and dream how wonderful your like will be.

Some day your child may cry and if you sing this lullabye

Then in your heart there will always be a part a of me.

Some day we'll all be gone

But lullabyes go on and on they never die that how you and I will be.,

Read more: Billy Joel - Lullabye (goodnight, My Angel) Lyrics | MetroLyrics 

I see her voice

Inside my mind

I know her face by heart

Heaven and earth are moving in my soul

And I dont know where to start

Tell me tell me the words to define

The way I feel about someone so fine.

How do you talk to an angel?

How do you hold her close to where you are?

How do you talk to an angel?

It's like tryin' to catch a falling star

At night I dream and she is there

And I can feel her in the air

Tell me tell me the words to define

The way I feel about someone so fine.

How do you talk to an angel?

How do you hold her close to where you are?

How do you talk to an angel?

It's like tryin' to catch a falling star.

Amazing bruises

As my regular readers will know, I’ve been having a tough time since my Hickman Line blocked and was inaccessible for a few months. This created a flare in my GvHD symptoms that has not yet fully resolved despite the line working now and me accessing treatment again. 

So I’ve been feeling below par for a few months. The last couple of weeks have seen more nausea and my skin is driving me nuts. It’s so itchy. Also as you can see from the photos, I am bruising very easily. When I got up today my eyes were fine. My daughter popped in and said “why have you got a black eye?” I laughed and said “I didn’t.” She made me look and as you can see she was right. Where it came from I have no idea. 

Last night I was lying in bed feeling a bit rough and all of a sudden I knew I was going to be sick. I managed to get to the loo in time but I can’t kneel now so had to stand and be sick. This required me to be a good shot. Lol. 

I came back to bed with a bowl and hoped it wasn’t the start of another period of intense puking. I woke up this morning feeling rough and with a headache that I haven’t shifted for 5 days. I feel quite nauseous too but I haven’t been sick again as of yet. 

I have a clinic appointment tomorrow so that is good timing. Fingers crossed there is an easy answer to all of this. 

It’s a struggle when things go on like this to keep your equilibrium. It could be easy to let fears about what’s going on grow. It’s easy to also allow all of this to dominate and take over emotionally as well as physically. I am happy most of the time and manage to stay on an even keel. The last couple of days I have felt down though. That is perfectly normal and I mustn’t let it get out of perspective. Who wouldn’t feel fed up with all this going on. Also I’ve always maintained that feeling sick and nauseous is the worst thing ever. I can cope with being life threateningly ill but I just hate the continuous nausea and vomiting. Let’s hope it’s short lived and that my lovely medical team have some suggestions tomorrow. 

In the meantime, life goes on out there. I have family members in deep pain just now and friends struggling with life. These things are so important to me and I want all those having a hard time to know that I am holding you in the light and sending you lots of love and hugs until it hurts a little less.