Sat-Mon SCT Days 16-18

So, here’s a list of my current symptoms:

Diarrhoeia – less frequent and more in control. No more accidents. Yay! But still liquid. I take Loperamide after every toilet visit.

Sickness – only twice. Once following a very strong-tasting soup, once after spaghetti with a tomato & chicken sauce, which I didn’t enjoy eating. I took an anti-emetic tablet after each time. I’m so thankful not to be having regular nausea or vomiting, as some fellow SCT recuperants are. I so hate being sick.

Sore throat – still hard to swallow, but nothing like as bad as it was. Every day it’s getting better. Drinking is ok. Regular swallowing (saliva) still hurts a bit. Eating is mostly ok. Swallowing tablets feels a bit hit and miss. Am I going to choke on them? Are they going to make me gag?

I’ve refrained from taking one particular tablet, Sucralfate, which is HUGE and made me gag the few times I tried to take one. According to Wikipedia, it’s a prophylactic cytoprotective agent against duodenal ulcers. I will ask how necessary it is to take it when I see the specialist nurse tomorrow. I’m not aware of an undue amount of stomach acid.

Sore mouth – the roof and floor of my mouth, my gums and my tongue are all coated and bumpy, as though I’d burnt them. This affects the taste of everything, especially less flavourful savoury foods. It feels worse after I eat, or I’m just more aware of it.

Dryness – my lips, inside my nose and the skin on my arms and legs are incredibly dry. My legs and arms look like a lizard despite lashings of moisturiser. It is improving daily, I no longer have chapped lips.

Loss of appetite/desire for food – I’m hungry, but not very interested in eating. I wish I could find food that I actually want to eat. When I eat, it’s more of a chore, a way to stop my tummy gurgling than the pleasure it usually is. I often lose interest part way through eating something.

The chicken soup was a success, went down very well, including the carrots. I’ve also successfully eaten some fresh pineapple, fresh cantaloupe melon, Tunnocks caramel wafers and am trying a bagel with cream cheese now. I feel very nervous each time I eat something. How is it going to taste? Is it going to make me sick?

Energy level – I have been for a couple of walks, one for about 20 minutes, the other yesterday for a bit longer, along an old canal, so nice and flat. I’m nervous of overextending myself, but so far walking slowly is ok. I had a wee nap on the couch when I got home. This morning, I washed dishes and cleaned the stove and kitchen surfaces. My energy level seems better than I might have expected. I understand it can take about 3 months to get back to feeling at all normal, but maybe in this respect, it may come sooner for me.

Taking tablets – I take Loperamide after every episode of diarrhoeia. I am supposed to take Sucralfate three times a day. I am taking Aciclovir, an anti-fungal four times a day; Penicillin twice a day, to protect against possible infections; and Omeprazole once a day, to calm my stomach. I don’t always manage to take all of them, either because I can’t bear it, or I forget.

Depression – I think this is the worst thing just now. I feel so low and lost and dislocated from normal life. I feel angry and frustrated too. Family are in touch, encouraging and empathic, but I don’t feel like I have anything to say, to offer. Friends are less in touch than they were before. Maybe they don’t know what to say. I do seem to get quite a bit of support from other fellow Myeloma patients, either who’ve been through SCT or are about to.

People keep saying how positive I’ve been and I sense an expectation to continue being positive. But I wasn’t being positive as an active endeavour – I just was how I was. Right now I can’t see anything ahead of me, even though I know that’s just how it feels, not how it really is.

I don’t feel like writing this blog even – it’s just so depressive and boring. I feel like I’ve lost the will/energy to write well, but it’s something to pass the time and it does feel important to record everything I’m going through.

I’m hoping the decision won’t need to be made for many years, but I can’t imagine considering going through this again. Those extra 2-3 million stem cells they harvested are potentially for another transplant at some point in the future. I guess if I get a long remission, then it will be worth it, but if it’s only a year or two, that might make me not want to go through it again for so little gain.

Maybe the uncertainty of how long a remission I’m going to have from going through this is part of why I feel so low. Another part is a sense of loss and separation from life, from people, from fun, from anything resembling normality. Not knowing what I’m going to do, what I even want to do. Everything I see around me feels like a chore. I don’t even feel impatient to be well. Sitting very still and quiet, I could let the days pass by, one by one. I keep telling myself that this too shall pass, but it’s hard being in it.

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7 Responses to Sat-Mon SCT Days 16-18

  1. Lilian Black says:

    I don’t know what to say that will help, I just want to offer something, It seems sad that you have less positive input from friends now yet family is still beside you. But perhaps this feeling will pass too and you’ll get back to your true self again quickly. All my love, Mum.xx xx.xx


  2. Sandra Abraham says:

    Hi Jet please don’t give up writing your blog it give’s me some idea what i’m about to go threw !!!
    I go in on Thursday for the start of the harvest !!! I’m a bit worried as i do’nt know what i’m going to be like after it ??? Anyway hope to hear from you soon on here Sandra x


  3. Mavis Nevill says:

    Hi Jet

    Still rooting for you!!! Wonder if you read the American Myeloma Beacon? Pat’s Place is a Blog there. Recently Pat had a SCT. He wrote about being depressed three weeks afterwards. It reminds me of what you are feeling. I wonder, if for some people, if is part of the transition process from Myeloma to remission. I do hope that as you see the disease subside you will feel brighter.

    All best wishes. Mavis x


  4. Snip says:

    I can’t decide whether to be super-sad or encouraged as I read this post, Jet… I’ve been in much the same place (as evidenced by how sporadically I am posting on my own blog, and it’s content)

    But we cannot give up, dear. The fighting spirit is probably as essential an element in this thing as all the chemo, all the health food, all the positive vibes from our circle of friends and family. We’ve got to preserve that desire to beat the odds, or the odds gain on us. Please don’t give in or give up.

    Thought of you several times day today, as I was getting my stem-cell-boosting chemo regimen. Per your comment, btw, absolutely right: no sweat! As to the mucosis issue: apparently they will be giving me injections of something (I forget the name) that stimulates growth of mouth/tongue / throat cells, which significantly reduces the issue. I hope so, because the velcade was hitting my mouth, so that is a sensitivity I have.


  5. Natasha says:

    I am very pleased you lost the will to write. You are really telling us all about it now. Raw hot bold truth. What was the most fun you had as a kid? Or perhaps more recently. Me and my mate Jana made the most disgusting tasting biscuits on Sunday. It was great fun. She was being all organized and I was playing the rebel, messing up the neatness. When we ate them and I had to say how horrid they were we couldn’t stop laughing. She laughs well.


  6. Argh…. can you, are you allowed bananas? They are great for returning potassium to the system, and I have a theory that getting low on potassium creates a ‘low feeling’ overall…just my theory still. I had (unrelated to MM as I am caregiver) a five-day ‘something’ that left me drained from the diarrhea, feeling weak, little appetite, etc. so I can relate to the feelings of ‘who gives a s**t?’ and not being motivated to do much of anything. But it passes and by the time you read this, you will probably be looking back at that blog and wondering “Why did I even post it?” but it DOES have value for those who have to go through the SCT, so leave it… and post again… and know you have cheerleaders out here… urging you onward! Intending you are feeling better and better day by day!


  7. Mel says:

    Dear Jet,
    You poor thing: so many pills and pains. Depression about it all sounds like the icing on the cake but as you say it will pass and it is understandable: you’ve been through so much and still feel uncertain about the future.
    I know I can’t visit, I have a cough anyway which you musn’t catch. Would you like to borrow some books?
    x Mel


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