Double whammy update

FormerMember
FormerMember
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Morning all, we have a dusting of snow today, looks lovely although it's only 1*

After the initial shock of my brother's diagnosis and the disappointment of my last scans showing disease progression in the brain & liver tumours things have settled down.

My brother is having 4 cycles of aggressive chemo and then a break and repeat PET scan to see if he's stable enough to be offered surgery which he's been told is his only chance of survival. Nothing's definite till it's definite as he's also in a tier 4 area and the hospital is stretched to the limit.

I started my 5th line of chemo, oral Capecitabine, to try and slow things down. The 1st cycle was ok but I had problems straight away with the 2nd cycle. Half way through & having only managed a little over half the dose I rang the chemo nurses and was told to stop taking it. I had constant nausea, a day of vomiting despite medication, mouth ulcers, palmer/plantar syndrome, so bleeding finger tips and painful feet like walking on broken glass. I was alternating between no sleep at all to 14 hours one night and could not get warm. 

I've heard oral chemo referred to as "chemo light" but that certainly hasn't been my experience. if I wasn't such a lady I would swear!!

 I'm seeing my Consultant on Thurs and have no idea where we go from here, or even if there's anything left to offer. I could have stronger medication to manage the side effects, perhaps steroids, but that medication has it's own side effects....

On a positive note my hair, eyelashes and eyebrows are growing back and we've got the pain management under control BlushFingers crossed

xx

  • Hi Tinalay, I hope the RT works well for you. I know how bad the pain is and wouldn't wish it on anyone, especially a virtual friend! I do hope they move you from the assessment ward now, they are too busy to allow you to sleep!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Dear ,

    I've arrived late and you will have been to Leeds and back to York by the time I am posting this.  I hope that everything went well and you are able to get a decent rest tonight.  Everything feels better if you have had a good sleep.  Here's hoping for a brilliant result.

    Personally I'm not able to sleep at the minute so I will be thinking of you.

    Love Gragon xx

  • FormerMember
    FormerMember in reply to Gragon

    Morning  Had a better night thanks, had to wait 2 hours for morphine so it was 1am before lights out by which time I felt a bit tearful. Then there were some bed moves but no emergency admissions overnight, phew. Should be a quiet w.e. for me.

    The night nurse recorded that he gave me paracetamol at 1am & zomorph at 5am, but it was the other way round! The day nurse couldn’t give me anything else but has turned a blind eye on me taking oramorph for break through pain, sigh. One of the reasons I’m here is for pain management.

    Sleep deprivation is a form of torture, is there anything particular keeping you awake, or is it pain as it seems to be for all the night owls? xx

  • Thinking of you in your hospital bed we have all been there and sleeping is so difficult xx

    Ruth 

  • Hi Tinalay

    I hope you are pain free, and that you are back home soon. I have been to Leeds a lot recently as started a drug trial on Wednesday. Take care sweetheart x

    Flowerlady x
  • FormerMember
    FormerMember in reply to flowerlady

    Good luck with the trial  That’s a huge investment mentally & physically, how are you getting to Leeds?

    There are huge windows beside my bed & I always think of you when I’m enjoying the wildlife, I know how much it means to you to be able to get outside

    xx

  • Hi Tinalay,

    I hate it when they get the facts wrong and it is even worse if they record it incorrectly in the first place.

    No particular reason for being awake but my sleep is just really erratic now.  Some nights I sleep for ten hours uninterrupted, other nights I get about three hours all night.  I sometimes fall asleep in the middle of the day watching tv when I didnt even feel tired.  After I went on the site I was up until 6am and then fell asleep for another two hours until 8am and woke with a headache.

    I've only been in York hospital once ( if my memory is correct)  I was stuck in a bed with no view but my Dad spent quite a lot of time in york and usually managed to get a view.

    I know you have your family but if you want anything just let me know.

    Gragon xx

  • Hello Tinalay

    I have seen lots of crocus today which really cheered me up. My boyfriend is driving me backwards and forwards to Leeds. The staff are great and it feels ok. I am very tired. I read your wheelchair dilemma. People may assume it's fatigue. As long as you can continue to get out, that's what matters xx

    Flowerlady x
  • Hello Gragon lots of people seem to be having sleep trouble just now. Even I have, which is unusual. Perhaps it's the strange times we are living through x

    Flowerlady x
  • Hi ,

    I have a lot of crocus poking through the remains of last years weeds in my garden.  i also have some daffodils in flower now and they always make me think of the city walls and Cliffords tower in York.  It is beautiful when they all come out.

    I used to sleep like a log.  Even now I rarely get up in the night to go to the loo but I still seem to wake up a lot.  I get about three hours sleep then wake up.  If I am lucky I can get back to sleep but often i can't.  I'm not fretting and am quite relaxed but just can't drop off.  Sometimes I am happy to stay in bed and try to doze but other times I am wide awake and after an hour or soo if trying to sleep I often get up for a couple of hours.  Last night I woke every hour from 2.30am until 7.30am when I got up.  My GP did offer me sleeping tablets a while ago but I reminded him that I have sleep apnoea and being able to wake up when  stop breathing is a definite bonus.  I don't think it is that keeping me awake though as I lived with that for years pre diagnosis and so far as I was concerned I slept well.  Since getting treatment the number of incidents per night has reduced by about 90%.

    It is not a major problem as it is not as if I need to go to work but it is frustrating.

    It is good that you can get transported to and from Leeds.  Apart from the convenience it is so much safer so far as any infections go.

    All the best,

    Gragon x