Another lump... does it ever end?

Anonymous7/6/2023
Anonymous7/6/2023 Member Posts: 176
edited August 2014 in Head and Neck Cancer #1

Remember the lump that everyone thought was a clip? (My neck is full of clips since the radical dissection).

Then it wasn't a clip, the needle aspiration came back 'acellular'.

But then my consultant wanted to repeat the needle biopsy mid-September, as he isn't satisfied that the needle actually took cells from the lump? So I had allowed myself to feel all relieved and everything for nothing. "Acellular" doesn't mean no cancer cells. At that appointment, he also explained to me about "micrometastatic disease". That wiped the smile off my face.

The lump itself seemed to recede and be less easy to palpate since the needly stuff.

I'm low at the moment. Low in mood, grumpy, sad, tired... and the 'lump' is definitely palpable now. It's bigger and is attached to my trachea.

I'm at clinic again on Wednesday (3rd Sept).

Sorry for posting this. It just doesn't get any easier does it.

All my efforts to reduce lymphedema have come to nought.

Still only on liquids.

Speech is still ropey. People say my speech is GREAT. But the speech I HEAR sounds terrible. IT IS NOT MY VOICE. I have lost myself. It's like I, Estelle, don't exist any more, only in my thoughts. Trapped inside, like how my dear, lovely Dad only exists now as a voice in my mind "I love you darling..." He died Christmas 2007. Didn't think anything could hurt as much as that. I was mistaken. 

Remember how I said my sense of taste was coming back a treat? Well that's long gone. Everything tastes as bitter as hell. EVERYTHING. I can't even be bothered with Ensure now.

Everyone screaming about how MARVELLOUS everything is, how well I am looking, and sounding, isn't it all SO wonderful.

Everyone cracks the same HILARIOUS joke about how FANTASTIC my weight loss is, "but of course you didn't want to get cancer to lose weight HAHAHA!" I am sick of pretending to laugh, pretending cancer was the best thing ever to happen to me. Because I am a Psychiatric Nurse, I understand they are doing it to shield themselves... And who wouldn't. I am uncomfortable for people now. I am not the person they knew. 

I have lost 115 pounds since last August. 

I'm exhausted. All I can do is drag myself to work and back. All I want to do is stay in bed and sleep as best I can, but when I wake up my neck skin is so tight and burny that it hurts to move. I have no speech at all for about the first hour after waking.

It was my 43rd Birthday last Saturday.

None of this was supposed to happen.

I was just a normal little person just living life, trying to help people and be a good nurse to troubled souls. I love my little cats and I try to be a good daughter to my mum (83). My husband needs a bit of looking after too sometimes - he's a lot older than me. I have always done my best and worked hard and been as kind as I could. I have made mistakes too and got things wrong, but surely I didn't deserve any of this. None of us do. Nobody deserves this. Honestly I just can't believe it sometimes

Please don't be cross about this post, I just can't help it.

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Comments

  • KTeacher
    KTeacher Member Posts: 1,103
    Vent away

    Sometimes we just need to vent.  This is a safe place.  Skiff calls us Abi-normal, I sometimes feel I am all capital letters!  It's ok to be down, just don't stay there.  You posted about your grandaughter singing "Happy Birthday"  I wish you would have been able to tape it.  Hopefully the lump is not much, if it is something, you will be able to deal with it.  I've done the dance more than once.  We are all here to help.

  • Anonymous7/6/2023
    Anonymous7/6/2023 Member Posts: 176
    KTeacher said:

    Vent away

    Sometimes we just need to vent.  This is a safe place.  Skiff calls us Abi-normal, I sometimes feel I am all capital letters!  It's ok to be down, just don't stay there.  You posted about your grandaughter singing "Happy Birthday"  I wish you would have been able to tape it.  Hopefully the lump is not much, if it is something, you will be able to deal with it.  I've done the dance more than once.  We are all here to help.

    I'm so sorry. I shouldn't

    I'm so sorry. I shouldn't come on the internet when I feel like this. It's discouraging and selfish.

  • KTeacher
    KTeacher Member Posts: 1,103
    Estelle_H said:

    I'm so sorry. I shouldn't

    I'm so sorry. I shouldn't come on the internet when I feel like this. It's discouraging and selfish.

    The place

    This is the place to be.  We have all been there and understand. 

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    Estelle_H said:

    I'm so sorry. I shouldn't

    I'm so sorry. I shouldn't come on the internet when I feel like this. It's discouraging and selfish.

    it is not at all wrong

    to be here when you feel like this.  You have our permission to feel like crap:)  that's pretty par for the course for where you are at in the scheme of things.  It's also pretty  usual to be depressed.  Boy that makes things worse yet. 

     

    Be well.

     

    Pat

  • Anonymous7/6/2023
    Anonymous7/6/2023 Member Posts: 176

    it is not at all wrong

    to be here when you feel like this.  You have our permission to feel like crap:)  that's pretty par for the course for where you are at in the scheme of things.  It's also pretty  usual to be depressed.  Boy that makes things worse yet. 

     

    Be well.

     

    Pat

    You are all much braver and

    You are all much braver and better people than me. 

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    T&P

    Estelle,

    Sorry for your pain, H&N picks on our dearest attributes.

    I will maintain positive for you, many of us have low times during and after treatments.

    Matt

  • denistd
    denistd Member Posts: 597
    CivilMatt said:

    T&P

    Estelle,

    Sorry for your pain, H&N picks on our dearest attributes.

    I will maintain positive for you, many of us have low times during and after treatments.

    Matt

    Not cross

    We don't get cross here Estelle, we all know what you are going through. I have been officially diagnosed with PTSD and I don't doubt others here have it too, and I know what it feels like feel ropey, probably you, me and Guzzle are the only ones here who know what that means. You are young and are much better equipped than most of us to handle the tough times. The little I know of you from FB and on here suggests a realistic pragmatic lady. You will be OK and it's OK to feel ropey.

  • lornal
    lornal Member Posts: 428
    down

    I can understand you being down and feeling the need to gripe.  I often hesitate to do that.  So often I just want to write something that gives people hope.  But, it is hard when you get cancer again. 

    I had my 2nd cancer treated in January. Now it is August.  Yes, I lost a lot of weight - but not a diet I would recommend (although, I am taking advantage of it, and started a great excersise program - and this time I plan on keeping it off).

    I have no voice at all - except for an electrolarynx - its too loud, its too soft - and I can quiet a room of strangers in no time flat.

    And I'm tired.  Although, it seems I am more tired on the days I WORK, and not as tired on the days I don't work - and am so busy that I don't have a chance to sit (hmmmm).

    I have to wait until December until my next PET scan - not soon enough for me.

    ANyway - gripe away.  We cannot be positive all the time - especially since we don't feel that way any where near 100% of the time.

    Lorna

    2007 & 2014

  • wolfen
    wolfen Member Posts: 1,324 Member
    denistd said:

    Not cross

    We don't get cross here Estelle, we all know what you are going through. I have been officially diagnosed with PTSD and I don't doubt others here have it too, and I know what it feels like feel ropey, probably you, me and Guzzle are the only ones here who know what that means. You are young and are much better equipped than most of us to handle the tough times. The little I know of you from FB and on here suggests a realistic pragmatic lady. You will be OK and it's OK to feel ropey.

    Estelle

    My heart breaks for you & all that you are having to endure. I have not had cancer & would never presume to know exactly how you  are feeling. We are family & what better place to let others know when you are down. This family has saved my bacon many times over the last several years.

    You are so right. Nothing about this crapppy disease is fair. A friend of mine on the colon board & I had a discussion about this very thing one time. We had this naive idea that if we were "good" people, treated others fairly, & did the best we could in this life, that life would surely be good. NOT SO! There is no rhyme or reason for any of it.

    One day I had a loving husband. Soon after, Cancer had him & took him away. Until llast month, I had a beautiful daughter. Cancer has taken her, too. I spend a lot of time at the bottom of a deep dark hole looking up, some days wondering if I have the  strength to climb out. The good thing is that there is always someone here throwing me a much needed rope.

    Sending you a big hug &  a rope.

    Love,

    Wolfen(Karen)

     

  • Jeff2159
    Jeff2159 Member Posts: 108
    Know how you feel

    and its alright to vent. Lymphodemia sucks and there is no ryhme or reason why it starts or stops. Luckily mine has settled down the past 6 months. My weight loss is the same as yours but I look at it that it has saved my life as my chances of having a heart attack are practically zero now. Now the voice. I now have a british accent as I have half my tongue but it is also sewed to the bottom of my mouth and pulled to the center of my mouth. And to have people understand me talk as well as swallow water and pureed foods, I need to have a retainer that lowers my pallet. by lowering my pallet, there is a big difference in my speech and I cannot drink without the retainer. Yes life sucks and I too was real down 2 weeks ago due to the side effects of the carboplatin and 5-fu. Loss of appetitefor 2 days, nausea for 3 days and then I could not swallow anything as I had a gag reflex for the last 3 days. I was pissed that its bad enough I cannot have a sandwich but then Icould not eat anything. got over it but I'm sure something else will come up. Keep your head up

     

    Jeff

  • wmc
    wmc Member Posts: 1,804
    Estelle....Venting is good therapy.

    Venting is good therapy and even the act of putting it on paper helps. We all have the need to vent ang just get it out. Now where will you find a better place to vent then where we all do understand.

     

  • Guzzle
    Guzzle Member Posts: 710
    wmc said:

    Estelle....Venting is good therapy.

    Venting is good therapy and even the act of putting it on paper helps. We all have the need to vent ang just get it out. Now where will you find a better place to vent then where we all do understand.

     

    Keep at it mate

    Estelle, sorry your having a s**t time. All we can do is move foreward and hope it gets better. You've had a much worse time than me. Thinking of you mate. Denis makes a good point about ptsd but I know you are aware of this - more so than me. Hope scan etc is good. Gary.

  • Guzzle
    Guzzle Member Posts: 710
    Guzzle said:

    Keep at it mate

    Estelle, sorry your having a s**t time. All we can do is move foreward and hope it gets better. You've had a much worse time than me. Thinking of you mate. Denis makes a good point about ptsd but I know you are aware of this - more so than me. Hope scan etc is good. Gary.

    massage

    Im going for lymphodema massage. Will let you know how it gos.

  • Grandmax4
    Grandmax4 Member Posts: 723
    Understand

    I understand exactly where you're coming from, sometimes I look in the mirror and wonder who that person is...

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    Estelle, please don't ever

    Estelle, please don't ever feel the need to apologize for having a bad day and feeling down, especially when you get bad news. we have all had our bad days and very thankful to have a place to come and people to chat with who truly know how we feel.  you are a wonderful person and very caring and encouraging.  you are allowed to have a bad day.  please don't be so hard on yourself.  you do not have to pretend to be fine when you are not.  we don't expect anyone to do that here.  we are here for all through the good and the bad.  we are family thoughout it all.

    hugs and great mojo coming your way,

    dj

  • lorig01
    lorig01 Member Posts: 83
    I feel exactly like you

    I am 2 years out from tonsil cancer and doing well but I feel exactly like you.  Physically i am doing well but psychologically I feel just like you. Bewildered and pissed.  I am seeing a GI doc because of some stomach issues and a diagnosis of "BArretts".  Now I am terrified of esophageal cancer. I sleep sitting up watch my diet and lately feel like my throat is swollen and tight. I am worried and I too am frustrated with folks who are so glad I "conquered" cancer. I spend most days calculating my net worth and wondering if I should just got off the grid and enjoy what time i have left.  But then I worry what if I do live another 20 or 30 years. I need the money... Just so frustrating.... 

     

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Estelle

    Sad but true it just never stops, even years after when you think you finial got it licked here comes a side effects. It is what it is and we make the best of what we have while we are here. I hope and pray that you will get through this just don’t give up or give in, keep fighting.

     

    God Bless

    Tim Hondo

  • phrannie51
    phrannie51 Member Posts: 4,716
    We have always been wide open

    to venting here.....that's a fact :).  This cancer brings changes.....some we can control, or at least distract ourselves from.....others are forever, and we just have to learn to live around them....and those can be frustrating to say the least....and these are just the physcial changes.  The emotional ones are harder to get a hold of.....they're slippery little devils.....they come and go.  I'm hoping that they are like many emotional uphevals we've dealt with in our lives......that times of upset get further and further apart.....Just knowing things are getting better, even if by degrees helps in dealing with them when they come.  We'll know the next time will be further out there in the future.

    I've been doing pretty good keeping my neurotic "OMG!  IT'S BACK" thinking to scan times.....but even so, there have been times when it's in my brain, and I can't shake it for a day.  I've accepted the physical changes.....they are there everyday so learning to live around them is easier.....they don't sneak up on me.  The emotional part does sneak up and grab me, but I'll learn to accept that too with time.....that's all it's about anyway....time. 

    p

  • Can I just thank you all so

    Can I just thank you all so very, very much for your replies. I had a very, very bad time last night, culminating in a surprise massive nosebleed. That was just the last straw.

    I am still dealing with anger and sadness about my diagnosis and treatment. I know I'm not the only one who feels like this sometimes. It's a strange, challenging new world for us all.

    Some have more practice at living this new life than I do. I thank you very much for your wisdom.

    I'm so sorry for sounding off. It just builds up and bubbles over sometimes. This is the ONLY place I have in my life where people DO understand - the only place I can be honest and open.

    Partly I am physically very tired. I work two jobs - I have to. (I'm definitely not alone there! Most people struggle these days, no matter what side of the Pond you are). It's all been just work/sleep/work/sleep recently. I am expecting my body to be able to cope with this, just like it did before all this cancer malarkey. 

    Unfortunately, it wont.

    Next time I have annual leave, I am going to TAKE it as holiday and not work it. (That's what I've just been doing this last couple of weeks, I had holiday and I worked it in my other job.) LESSON LEARNT!

    I am so grateful to you all - honestly - you have no idea how much.

    Love Estelle x x x x x

  • Guzzle
    Guzzle Member Posts: 710
    Estelle_H said:

    Can I just thank you all so

    Can I just thank you all so very, very much for your replies. I had a very, very bad time last night, culminating in a surprise massive nosebleed. That was just the last straw.

    I am still dealing with anger and sadness about my diagnosis and treatment. I know I'm not the only one who feels like this sometimes. It's a strange, challenging new world for us all.

    Some have more practice at living this new life than I do. I thank you very much for your wisdom.

    I'm so sorry for sounding off. It just builds up and bubbles over sometimes. This is the ONLY place I have in my life where people DO understand - the only place I can be honest and open.

    Partly I am physically very tired. I work two jobs - I have to. (I'm definitely not alone there! Most people struggle these days, no matter what side of the Pond you are). It's all been just work/sleep/work/sleep recently. I am expecting my body to be able to cope with this, just like it did before all this cancer malarkey. 

    Unfortunately, it wont.

    Next time I have annual leave, I am going to TAKE it as holiday and not work it. (That's what I've just been doing this last couple of weeks, I had holiday and I worked it in my other job.) LESSON LEARNT!

    I am so grateful to you all - honestly - you have no idea how much.

    Love Estelle x x x x x

    Holidays

    Estelle, take your time off and resist agency work or additional hours if you can. There is a real phenomena in the US where people don't take all of their leave. I think this is because most Americans have a great work ethic. I have heard people on this forum say that post illness they will take their allocation. I insist on staff taking their time off. I believe it makes people more functional and relaxed. After what you have been through work life balance is even more important. I know money is important but not as important as your health. I know everybodys circumstances are different and please don't think I am preaching to you. I am shortly returning to work after a week in a treatment centre. I will do a staged return. Have NHS done the same for you? Are you aware of the Disability Discrimination Act and the concept of reasonable adjustments? To demonstrate my point I have just booked a cycling weekend down your neck of the woods in Shropshire. Staying in camping pods so costs next to nowt. If you can book a break Estelle. Could be in a tent, YHA or in your own garden. But please take some time and chill out. Bimbling around the UK and Europe has certainly helped my mental and physical recovery. It may not be your thing - whatever your thing is treat yourself to a bit of it. I had a massage today and it was lush! Regards, Gary