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.
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