Sleep

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Hi 

Diagnosed a week ago with cancer on the very back of my tongue which has brought a mixed bag of emotions.  

In some ways I’m almost relieved.  The diagnosis explains so much of what I’ve been experiencing this past while; the coughing, the difficulty in swallowing, the irritation when even the tiniest bit of food gets stuck mid-swallow, the tiredness and the feeling like I’ve inhaled a bunch of cat fur that has been so annoying.  Mostly the tiredness though.  

Without the diagnosis, I’d been testing constantly for covid because I’ve been so very tired of late.  I’d try to swallow something — and a bit would get stuck and I’d cough and cough like I was choking — but nothing would really come up and it was like the bit I was choking on was far too small to be choking on it.  Then the muscle aches and more tiredness.  I’m mid menopause so figuring out temperature differences (for fever) amongst hot and cold flashes is next to impossible.  One minute I’m ok,  then sweat dripping, then freezing — so I’d take my temperature and all ok.  

So with all negative results I felt like a bit of an imposter.  No reason to feel tired after doing a few dishes or picking up around the house. No reason to not babysit the grandkids though each time I did, it seemed to take forever to get the energy levels back.  And now, I know why.  So now, I don’t feel so guilty and am able to be a bit nicer to myself. 

There’s fear — I don’t do pain well and I’m terrified of that part. As soon as I read they give you morphine through the 3rd or 4th week -/ I was afraid.  But I’m a bit excited too -/ I’d already changed my diet to mostly soft/easy stuff to eat which being type 2 diabetic has meant close watch of sugars etc but I’m hopeful for a cure for this so in a few months I might be able to eat again — hopefully.  

Since the diagnosis though I’ve been able to sleep.  And I mean sleep.  If sleeping was an Olympic sport I could easily be on the team for England or Scotland.  I’ve averaged about 10-11 hours/day lately … some days 15 hours, some days 7 or 8 which when for years I was lucky to get 4 hours in a row, this is nice.   

The only trouble is, I’ve a week till my first appointment with the cancer dude, then I start daily chemo-radio therapy or whatever it’s called.  And I have SO much to get done during this time to keep the house running and things ok for the last daughter who’s at home.  She is autistic and a teenager and requires so much extra care so I worry about how I’m going to manage. 

Im trying to get meals for both of us prepped in advance so that when this gets bad I will only have to heat things up rather than cooking.  This means I have to defrost the freezer, empty the cupboards, clean out the back of the stove -/- do all the things that need to be done —which is hard to do when you’re sleeping all day.  

A couple of days ago when I couldn’t sleep for the life of me, I decided a hot bath might help — started running it — and then had to mop up the floor to the bathroom since I’d let it run over. I swear I’d only sat for a couple of minutes but evidence suggests otherwise.   

Im trying to be forgiving of myself—to kee a positive attitude and this isn’t so easily done after a life time of pushing and pushing oneself.   It’s new and it’s scary and very over-whelming.  In sleep I can turn off and have pleasant enough dreams for now.  

Anyway — that’s me right now.  

  • Hi  and a welcome to the Online Community but so sorry to hear about your diagnoses.

    This is such a stressful and challenging time for you, but when it comes to getting support and asking questions there is nothing better than talking with others who are on the ‘exact’ same cancer and treatment journey.

    The Community is divided into support groups (discussion rooms) so can I recommend you join and post in our supportive Head and neck cancer support group. This is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

    If you'd like to connect in with a group click on the Green (Bold) Group Link I have created above. Once the group page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."

    You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go. You could copy and paste the text from this post into your new post.

    Macmillan have many support services so do check out the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. These services provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.  We also have our Ask an Expert section but do allow a few working days for a reply.

    We also have our Telephone Buddy Service where you can be matched with someone who understands what you're going through, and they'll give you a weekly call.

    Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and aim to give support to all the family.

    Do get back to me if you need further help.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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