Evaluations & Review & Cycles

Going through treatment
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Well hello @Erica and everyone elsewhere on this thread . I thought I would start a new thread and so it’s easier to update on my health. I couldn’t see how to just update without it getting lost among all the important but different issues . I have been quiet but reading some of the contacts . I have been helped to read what others also have struggled with . I know I am not alone.

Well in between starting my treatment in January 2022 and February , a war has started … it puts things into perspective - particularly when we hear and read about the impact of those caught up in it which have a cancer diagnosis or were in the middle of treatment . I don’t know how I would cope , I can hardly walk at times on my carpet never mind negotiating a broken bridge in icy conditions.

I have been praying for peace and restoration both in Ukraine and for the war that has been (note past tense ……!!!) in my own body.

This week I start my 4th cycle . I had a telephone review yesterday and my cells ‘are behaving themselves’ . The team are ‘pleased with my progress’ , but I will need to take monthly self administered iron injections . The long term plans have still not been decided . You will recall I have myeloma and have my own stem cells on ice in another local hospital , but was too poorly for a transplant last year . Covid in August also got in the way of earlier proposed treatment .

Generally , I am okay but I have had some bad days when I have felt awful …. I muse : they are killing the cancer cells but it sometimes feels like they are killing me …!!! I am not on any pain medication anymore - I was on fentanyl and morphine and paracetamol but stopped these by choice 2 months ago .

The awful icy numbing sensation in my toes I can’t stand . I fell in the fridge last week … and cut my finger as I toppled over /lost my balance . I have numbness/burning sensation around my bottom lip too which is as a result of medication . Food doesn’t taste the same and I put on a bit of weight which my consultants are not concerned about but of course I am …:upside_down_face:

A lot of people are praying for me and I also lay hands on my head and pray for myself . I speak to my bones and my blood cells.

Yesterday I felt okay and cleaned both the outside and inside lounge windows in the fresh March sunshine . I can’t wait for sunnier days but a word of warning : the sun and chemo don’t mix and I felt absolutely awful after sitting in my sisters window in the sunshine on Sunday .

I am not needing to sleep so much in the afternoon but I do go to bed to lay down and stretch out my bones with my hot water bottle on my feet. It is heaven.

I have noticed that sometimes I struggle with recalling a name but it is only momentary . I don’t know whether this is the chemo brain people have mentioned or simply because I just need to rest .

I am back in treatment tomorrow (Thursday ) and my time slot has been changed from 9:45 to 1pm. The treatment is for about 10 minutes so although I prefer a morning , I should get home before the 3:30 school crush.

My bathroom is scheduled for a refit next week . I am dreading it and having workmen in and out.

Take care everyone who chance to read my update .

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Hello @Mayo57. Thank you so much for updating us and for sharing your story. I identify with your comments regarding the terrible situation in the world at the moment. It makes you realise how fortunate we are to have the NHS and medical care. I hope you aren’t in too much pain. It’s a brave decision of yours to stop the painkillers. It is a fine balance between managing the side effects and getting some relief from the pain. I have a different blood cancer to you but I know what it’s like to experience daily pain. I am glad you have prayer support and your faith. So important. I do hope your bathroom re-fit isn’t too disruptive. Think how wonderful it will be when it is finished! Warm wishes. Willow X

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Hi @Mayo57 great to hear from you with your update, which is written so clearly.
I think, as usual, @Willow has replied to you so eloquently
Yes, having a faith and that community around you is so comforting. I really, really like the idea of praying for yourself and talking to yourself.
I used to think of my insides as the War of the Roses, the white versus the red cells.
I am glad that your cells are behaving themselves.
How do you feel about administering the iron injections?
How are your pain levels having stopped your pain meds?
Cleaning your lounge windows inside and out puts me to shame, the sunshine sure does show up the dirt, marks and smears.
Good luck with the bathroom refurb next week, please let us know how it goes and I hope you are not without it’s vital facilities for long.
Beware of that fridge, I bet you gave yourself a shock let alone cutting your finger.
Our kitchen needs refurbing and I dread to know what I will find at the back of the cupboards or where we are going to put the contents of the whole room.
Look after yourselves and I eagerly await updates from you and @Willow.
Be kind to yourselves

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I love the image of war of the Roses :rofl:. I don’t have the pain I did have @Willow so nothing to do with bravery :stuck_out_tongue_closed_eyes: some slight throbbing but no excruciating pain in my shoulder blade that was there in a November 21 which I believe was as a result of lesions… :flushed:.

I will update you all on the refurb . I am a trifle anxious about access to the loo but I will sort somehow . They say they will take about a week .

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A week without a loo is far too long for me.
A bucket is no substitute for me @Mayo57
I always think of the practicalities !!!
I will certainly be thinking of you and as @Willow it will be wonderful when it is done.

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Are you having velcade?

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Hi @Mayo57 how’s the refurb going and I trust you have your facilities back?

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@Erica , we had an awful experience … everything that could go wrong did… plumber forgot to tighten screw so we had a massive leak coming through ceiling over a weekend . Then… the electrician (same company ) disconnected my hob by mistake and had to be called back … then …. the toilet (the new toilet ) wouldn’t flush and we were without proper flush for three days . A job that should have taken a week took 3 , absolute lack of professionalism by middle managers (they just don’t want to know and you pay your money up front ). My house still feels damp …!!! I live in a bungalow and the water seeped through to my daughters room ruining the chest of drawers . The bathroom now looks nice, but the house feels sullied and I will ring my insurers tomorrow as the ceiling looks like it’s bowed … This morning I cried .

Some good news on the health front though …’no evidence of disease’ . Proper face to face consult next week after further bloods .

Thank you for asking :two_hearts:

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Oh @Mayo57 what a truly awful experience, one disaster after another, oh, I bet you cried, I think you did brilliantly to just get survive it. Your bungalow must feel horrible and damp, nothing worse.
Good luck with the insurers and perhaps be prepared to be persistent. Also perhaps list everything and take photos and I await hearing how you get on.
Brilliant news on the health front ‘no evidence of disease’ is so, so good and a proper face to face consult next week is the icing on the cake.
Please let us know how you get on and be kind to yourself

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