Feeling down and slightly depressed

LSU2001
LSU2001 Member Posts: 32 Member
in Colorectal Cancer #1

Good Evening All,

I finally finished my about me page so if anyone wants to see my story, its there.  Today though I just need a space to rant and ramble about my current mental and physical state.  I have noticed the past few Chemo Treatments I have had what seems to be intensifying side effects.  For the past 3 treatments, I have noticed a real uptick in nausea both on the days immediately following infusion and on random days like nine or ten days after treatment.  In fact last night, I was feeling unwell, having abdominal cramps, and nausea.  I took zofran and marinol and neither seemed to help.  Around 1 am, I had a spell of rather severe vomiting along with about a half hour of dry heaves.  This episode really exhausted me and even after I was finally finished, I still felt nausous and had the cramps.  I guess I finally fell asleep around 3 am.  This morning was better but I was weak as a baby and really could not get moving at all until around 1 pm.  I feel ok for now.  

The other major problem I have been dealing with for many months now, is severe rectal pain and spasms.  My Doctors, including my GI doc, believe that this pain is due to the radiation treatments I had at the beginning of my treatment back in may=june of 2016. Apparently I have a lot of chronic inflammation in my rectum and as I pass stool, it starts the rectal spasms and causes the severe pain.  It is not everyday nor continous and is related to defecation, but when it hits it is severe, unrelenting pain.  This pain has had me curled up on the floor in tears more times than I care to count.  My doctors have been trying for months to treat the pain with increasing doses and strengths of pain killers.  I am currently wearing a 50 microgram per hour Fentanyl patch and I have Fentanyl sub lingual spray that goes under my tongue for breakthrough pain.  I also have to take flexiril muscle relaxers and I use cortisone suppositories to help with the inflamation.  

The problem is that even with this strong opioid pain killer regimen the pain is only manageable.  When I have a spell, it usually takes at least 3-5 hours and two doses of the sub lingual Fentanyl to finally resolve the pain.  I find sitting on a heating pad during these episodes helps a good bit as does soaking in a hot bath.  

I gave the above background mainly to say that this increasing nausea and severe pain has combined to make me strongly consider, giving up on treatment and just allowing the disease to run it's course.  I constantly say that giving up is not an option but when dealing with the side effects and pain cause my quality of life to fall off a cliff, it makes it very hard to stay motivated and to continue to have a fighting spirit.  

I have found myself crying for no apparent reason, beating myself up about being useless around the house or anywhere else for that matter.  This behavior is very unlike me.  My family and co-workers are always telling me that I am the most hard headed person they know and that my drive to keep going no matter what is going on physically is inspiring.  I don't feel so inspiring right now and havent for the past several months.  It just seems that here lately it is getting harder and harder to keep fighting and subjecting myself to the treatments that are keeping me alive.   I also have a new physical issue that is currently not causing any symptoms.  My last CT scan showed some abnormal tissue in one of my ureters and a possible blockage from this tissue.  I have to have a scope May 6th to investigate this issue and place a stent in the ureter if necessary.   Docs, do not think it is cancer, but I have to investigate and get the blockage open so I don't end up damaging my kidney.  I am not looking forward to this procedure.  (I am male)  I am scared of the after effects of the procedure and really don't want to deal with yet another physical issue.  

Sorry for the whining and complaining but I figured if anyone could understand my feelings it is the people here.  My family does not get it, they just tell me I have to keep on keeping on.  While I agree with them for the most part, It is hard to deal with all of this physical stuff and the emotional stuff, with little to no ability to vent and discuss my feelings. 

Any feedback or similar issues are welcomed.

Thanks,

Tim

Comments

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #2
    A quick reply

    I am at work, and should not be on the computer, but I do want to address one of your issues.  You say 'My family and co-workers are always telling me that I am the most hard headed person they know and that my drive to keep going no matter what is going on physically is inspiring.'

    I just want you to know that however nice, and well-meaning these comments are, they do make you feel like you have to 'live up' to them and you DO NOT have to live up to anyone elses expectations.  If you are feeling this bad, ride with it, and don't feel guilty - wether you know you are or not - that you are no longer, for this moment in time, that hard headed person with drive.  Right now, you feel like crap and you want to give up. You probably won't, but thats in the future. Right now, feel your feelings, allow them, don't feel like you are giving up, just allowing yourself to 'feel' what you feel. 

    You have us, and your loved ones who will not let you go under. So tread water for a while, and get this pain issue sorted.  I have the same problem, due to radiation, but the episodes are infrequent if I keep eating right, and while painful, certainly nothing like the pain you are experiencing. 

    I wish you all the best. I pray you will find a way to get these spasms and pain under control, and then find you have the strenght and energy you need to keep fighting the fight. 

    I am sending blessings and my best, most sincere wishes.

    Tru.    P.S. my husband had a stent inserted into his uretha. He had it done while undergoing kidney stone surgery, but I was there when he had it removed, and while he said it 'felt kind of weird' especially the female medical assistant holding his penis, it did not hurt one bit.  I hope for the same for you - well, maybe a male medical assistant, eh.  Good luck on the 6th

  • abrub
    abrub Member Posts: 2,174 Member
    #3
    I know the pain of which you speak

    I develiped an anal fissure during chemo, and defecating (or even thinking about it) left me in tears, curled up and fetal.  My dr had the pharmacy compound a cream with Cardizem (yes, the heart med) to help minimze the anal  spasms.  I also used Nupercainal to help.  Unfortunately, I didn't have full relief until a month or so post-chemo.  (I never had radiation.)

    As for the nausea - ginger helped me as did Atarax.  However, I'm with you - I am now living for Quality of Life rather than Quantity.  I have refused radiation (which would be of questionable value in my case) and will not consider chemo again.

    Your decisions need to be right for you.  People around you will encourage you to "keep up the good fight" but they don't know what a toll treatment takes on us.  However, please let your dr know about the severity of your side effects.  Perhaps they can do something.  Also, you might want to ask about Cardizem cream.  (It can't hurt to ask.)

    Sending you best wishes.

    Alice

  • NewHere
    NewHere Member Posts: 1,428 Member
    #4
    FOLFORI

    Long story short for me - Colon Cancer surgery & 6 months chemo, lung met/resection 2016 (was there from beginning but was small so though suspicious later confirmed), spread to lymph nodes (inoperable) and lung mets. And spine mets.  Immunotherapy trial did not work.  Radiation for spine and chemo FOLFORI started in October 2018.  Avastin added in a couple of months ago.

    Anyway I got VIOLENTLY ill from my first FOLFORI treatment.  Threw up 30 times over 6 hours 9 days out, 100 times over 6 hours about 14 days out, 50 times about 21 days out and my WBC tanked.  They sent me for brain scan to make sure nothing else going on and postponed my second treatment.  I was ready to quit during those days after the first treatment.  It was brutal with dry heaving for hours.  So I get it.  

    They dialed down the Ironetecan and it has been a lot better.  They also increased the time of the infusion from 30 minutes to 45 minutes and then, sort of by accident, up to an hour.  It helped a lot with not really quite as bad during infusion and afterwards.  Not that it is perfect, minor nausea with no vomiting and just basic tired.  I have a bit of indigestion day of infusion, some hiccups the next day.  But pretyy much that.  Ask for sublingual Zofran (or equal) which works quicker than the other pills.  Good to have some if you feel a quicker onset and the other pills will take too long.  Also ask about the infusion premeds such as atropine and some of the heavy hitter anti nausea meds.  I am guessing they are doing that, but it never hurts to ask and maybe review other options there.

    Fentanyl and other opiods can cause constipation and hard stools, perhaps other options with less side effects along those lines may help - it sounds like there could be some circular things happening?  Maybe an adjustement to your diet, more liquid and gentle fiber so stools softer to calm inflamation.  Again, you very well may have gone through these options but I wanted to put it out there.

    One other opiton is medical marijuana if available.  Make sure to look at the types (vape, edibles, tincture) and go through with a doctor or pharmacist who knows the reactions.  For FOLFORI I was told to avoid CBD and go with THC since CBD can exacerbate the adverse part of the treatments.  I have the card now for months, but have not filled anything yet.  

    And lastly, you are not whining in any way whatsoever.  This all stinks and it is incredible to see how many people have so much strength to make it through this is so many different ways.  And if anyone does not get depressed or pissed or any other reaction a long those lines it is more the outlier by a wide margin.  We can b--th and moan about this now and again.  And people going through it will never say someone is whining.

     Hoping you feel better soon and they can straighten this all out for you.

  • abita
    abita Member Posts: 1,152 Member
    #5
    This has no basis in medical

    This has no basis in medical facts. However, for me, I believe it is true. I also had my gall bladder removed. Once when I was extremely fatigued from chemo, but starving, I ate a bag of chips. This made me throw up after a bit of feeling dreadful. I really think, again no science to back it up, but I think no gall bladder means cannot process multiple servings of fat at one sitting. Other than that, I get nauseous if I let my stomach get empty. 

     

     

  • Butt
    Butt Member Posts: 352 Member
    #6

    For rectal spasms there is a Valium suppositories. They make them in a company’s pharmacy by prescription.Not expensive works good. You would think narcotics can take if the issue. I thought so too But it appears not always the case. Butt. 

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #7
    Spasms

    My spasms lasted over 2 years and although they gave me pain medication for it, plus protofoam, the pain medication made me so constipated that it made it feel worse.  The spasms also had me cry uncontrollably for a couple years.  Not able to sit stand for long periods of time was a daily thing.  Going to the bathroom was horrible and hated it everytime.  Back then going 25-35 times a day was a torture.  A sitz bath probably helped me the most.  I'm sorry that you are on such strong pain medication to help you and hope that they can find something to help the pain.  It's got to be terrible for it to last hours without any relief.  Colorectal cancer has to be one of those cancers that even after you are healed you sometimes never get done with the disease altogether.

    Kim

    Kim

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