22a. Red Alert

Good evening lovely people. Back from the hospital and more blood tests in preparation for the harvest on Monday. Not fabulous news unfortunately: my neutrophil count is a big fat zero, which is as low as it can possibly go. This means I have no immune system whatsoever so am on house arrest as opposed to being taken into Ward 11, where they all know I would be very unhappy. I am lucky to have such understanding doctors. My haemoglobin count is also very low at 81 when ideally it should be over 100. All of this means the stem cell harvest on Monday might have to be delayed and I will probably have to have a blood transfusion which I really don’t want. Can I ask that those of you who have me on your healing list direct the focus to raising both white and red cell counts? I asked once before and the results were astonishing. Thank you so much.

It is strange how these things affect you psychologically. I went in for the appointment feeling slightly tired but generally quite good. Being told that you must stay away from people and be virtually isolated on bed rest definitely takes the bounce out of your step. I am sure there was a little one when I went in, and room for the odd chuckle, but I definitely feel worse now than I did. However, I will be taking myself off to my hammock on the beach (see previous post) for some R&R. I also have a beautiful new, purple laptop to play with, which makes it much easier to keep up the blog. Hopefully there won’t be such big gaps in communication in future.

Several people have asked about Dot as there hasn’t been much mention of her of late. She really is a treasure, allbeit in slightly scary packaging. She is another part of the incredible nursing care I witnessed last week. I only spent a few hours on the four-bedded ward, but during that time she worked so hard with those ladies to cajole them into eating and drinking. High protein drinks are given to patients unable to eat and she pulled out all the stops, persuading them to choose a flavour then sitting with them for a moment to make sure they had a few sips. She also totally came into her own today. There is about an hour’s gap between having the bloods taken and the doctor’s appointment to discuss the results. During that period I decided to avail myself of the facilities and duly trotted towards the female conveniences. Now I have been going to this ward at least once a week since early January, so I am pretty sure I know where the toilets are. I was about to push the door open and realised it had a great big MALE sign on it. I know I am suffering from a touch of chemo brain but this was strange. I went round the corner to the one that is usually MALE in case there had been some mysterious role reversal, but that was still in its male incarnation. I passed the nursing station towards the next one, that was MALE too. I felt really stupid. Had I unwittingly crossed over into some alternate universe where there were no conveniences for ladies? I was standing in this confused state when Dot wandered by, so she asked if I was OK. I explained the dilemma. She thought it was odd too, and went to the FEMALE lately turned MALE facility and knocked on the door. Nobody in there. She ripped the sign off the door, and hiding on the reverse was FEMALE, so she whacked the sign back on and we were home and dry and a lot more comfortable. We both had a good laugh as that was before I got the blood results! See, it’s not what you know but who….

We had a good meeting with the stem cell co-ordinator today. She was the one to give the blood results too, but she knows how much I hate staying in so it was her involvement which probably got me allowed home. I gather there wouldn’t usually be any choice, so I am really grateful for her understanding. She was also telling us more about the process and the machinery involved, which does sound truly amazing. I thought it was going to be a metal machine a bit like an old fashioned tea urn (no idea where that came from!) but you get to see all the blood cells being taken off and separating from the plasma. It sounds much too complicated to explain properly so I am hoping I will be able to video some of it on my phone and of course share with all and sundry.

Hospital is such a weird mix of science and humanity. I despair at the way anything perceived as ‘alternative’ is so often squashed or derided, especially in hospitals, where science is truly king. But these people, these nurses, doctors, technicians, porters, volunteers, cleaners, they really CARE. When I was considering leaving chemo for a while my consultant was really troubled that I could end up being a lot worse off. Some would say that is because he only believes in the science, but that isn’t so. He and all the other lovely people I have come into contact with really, really care, and they want their patients to get well and be discharged, permanently. We might have differences in our perspectives and beliefs, but ultimately what matters is that you are surrounded by people with your best interests at heart. I have been fortunate enough, up until this illness, to spend very little time in hospital, and I think I was expecting to find a real life portrayal of the worst that is written in the media. The food, clearly, is right up there, but otherwise I couldn’t have been more surprised. I was asking one of the nurses today how the blood test samples get down to pathology so quickly, and she replied that there is an army of volunteers who are regularly ferrying notes, samples, whatever is required, between departments, which explains how my file seems to appear magically wherever I am. I have never seen any of these people so they must move like the wind. But it did get me thinking that when I am through all this I would like to help in some way. I’m not really a tea trolley kind of person, but belting between different points in my MBT trainers really does appeal and it would be a fabulous way to get fit as well as give something back to the people who are helping me so much. So now I just have to get well :-)

Wishing you  a sunny weekend

Margaret xx

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About Margaret Cahill

After diagnosis of Mantle Cell Lymphoma in 2013, I started this blog to stay in touch with friends, family, and and an ever increasing network of lovely people who sent me healing. The readership increased and I ended up blogging for all I was worth to try and stay sane through the chemotherapy and stem cell transplant. Then after I went into remission (thankfully) I was enjoying the writing so much that I have carried on, and the blog seems to have become a bit of a resource for people, which is lovely. The original year of blogs have now been made into a book, Under Cover of Darkness: How I Blogged my Way Through Mantle Cell Lymphoma. It fills in a lot of the gaps between the blogs, and the tone falls somewhere between graveyard humour and explicit details of chemo treatments. I do hope you enjoy it :-) Mxx
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6 Responses to 22a. Red Alert

  1. matrixdavis says:

    Hi Margaret, I’m directly replying here and hope it gets to you… Prayers and blessings and prayers and blessings some more! You are an excellent diarist, though it’s a pity your illness has allowed for this talent to shine. It’s fascinating stuff and takes us fully into your current difficult reality….

    I don’t have your chart data on file. If you are good with this, I wonder if you might post it to me. I’d like to look at transits/progressions and the like. That’s the first thing we do to try and make heads/tails of this – if we can.

    Health blessing and love too,

    Martin xx

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    • Hi Martin, thank you so much for your thoughts and prayers, they are much appreciated. It is so strange the way this illness is giving me space for rest and contemplation, and then that the blog has become the means of expressing it. If there is anything much to be grateful for, this is definitely high on the list. Big hugs M xx

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  2. maria barry says:

    Sending healing xxx. This blog should be featured somewhere public :)

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    • :-) thanks, Maria. Just having a blog is quite scary but I am getting used to it. I’m usually incredibly protective about my private life but somehow this situation created a voice which is determined to be heard. I’m hoping to be allowed to record the stem cell harvest, and if I am I will put on YouTube with a link from the blog. No doubt that will generate a bit more interest! Mxx

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  3. So sorry to hear the news about your immune system. Thinking of you and praying that you get some good news soon.
    Deb x

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  4. Iris Horsey says:

    And keep on blogging, M\argaret. My/our transiting Pluto in 6th is soaking all this up and I hope you have had the benefit of Annie & Maisie – extremely special – and I have never done this before. Iris xx

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