Current experience

Hello all

So around 20% done - first week complete.  Was so relieved yesterday when disconnect from chemo happened.

 Am struggling with headaches, queasyness,  pelvic ache (like trapped wind) and omg so so tired exhausted and brain fog - I can't seem to focus on anything and if anyone asks a question I can't seem to find the answer!  I feel tearful and emotionally fragile.  Don't have any appetite and people trying to tell me how I should eat more veg and fruit I know they're right but it makes me feel yuck. Am taking metoclopramide for anti sickness that barely keeps it at bay and have stronger anti sickness but don't want to take if it makes me constipated.  I think I have a bacterial eye infection so can't put contact lens in that eye so my vision is not 100%. In need of some cheering!!  I think to myself that's only one week and I feel so crap what the hell will I be like after another couple of weeks?!!

Carole

  • Hi Em - am so sorry to hear about tooth!  I sympathise as I always get trouble with teeth if I have a health issue and was a bit concerned and convinced I'd lose my remaining teeth with this treatment lol.  All good so far though and touch wood apart from lack of taste in chemo and slight numbness, I didn't get mouth sores yay.  I guess your tooth decision depends on why it has to come out now or not.  Is it loose or infected? If so I guess you got no choice but wait. 

    I also worried my cancer was getting worse beforehand as the pain was increasing so understand those concerns. I believe we are the same T2 N1.  However - not that I'm an expert - I don't think its an aggressive type but just uncomfortable. Correct me if I'm wrong please others!  Take care 

    Carole x

  • Thanks Carole, yes we're the same with diagnosis & good to know that's how you felt too. I've just been getting a lot sorer with sharp pains etc.. and bowel movements changing again, definitely noticed a difference.

    I'd calmed myself down earlier in week and thought oh well 2 weeks isn't that long but then had a call from nurse saying oncologist isn't happy and he wants me to go ahead with treatment which threw me again. Why he didn't contact me earlier in week to discuss it I don't know, perhaps if he'd spoken with dentist he may have got me seen quicker.

    I've decided I will have the extraction before treatment as I'm aware the chemo & radiation can leave you vulnerable / weakened bones etc.., and like you, I've unfortunately already had issues with my teeth over the years! I'll see what next week brings. Really hope you have a relaxing weekend X

  • Hi all

    I have passed the half way point!!!  15 sessions done and 13 to go. Yay!

    So at the beginning of my 4th week.  Had a wonderful review with radiotherapy nurse this week and she was so helpful in her advice.  She advised me to take paracetamol 4 times a day and to ride ahead of any pain rather than waiting for it before taking medication.    I've been doing that last few days and it has helped enormously.  She also promised stronger pain relief when I need it.

    Also taking the med for diarrahoea which controls that.  Getting pretty fatigued now: I tried to do some gardening yesterday and only lasted 10 minutes before I had to lie down for an hour!  I was quite shocked at how it made me feel - dizzy and faint. Annoying as the sun is shining and I want to be out there.  A new one today I've noticed that going to toilet and opening bowels just about wipes me out and makes me feel sick with discomfort.  I dread going to the loo. Think I'll be after stronger pain relief early this week.

    Nurse also said to eat little and often - and what I want which helped as I was stressing about eating the 'right' things.  She said stodge is good and I confess the sausage mash and beans tasted heavenly lol. I find that if I am late eating then I start to feel weaker and unwell so she was definitely on the nail with that one. 

    But I feel fairly bright in myself and can still manage to smile.  

    Carole x

  • Oh Carole, I'm so glad to hear from you! You're doing BRILLIANTLY! Love that you have such a great nurse. I think most of my anxiety would have been less if I'd have felt confident that I was going to get pain meds when I needed them. 

    I'm impressed that you even tried to garden this far into treatment. Glad you paid attention and rested when you needed to. And yeah, loo visits may be eeky for a bit yet, but staying up with your pain meds will help, so will the light frequent meals.

    Bright and smiling.

    What a badass.

    Hugs

    Suz

  • Carole, wonderful to hear from you with such a positive post!  And I am also pleased you have a helpful nurse, when you next go in, be sure to tell them that things are starting to get more painful and they can up the meds.  You mightn't need so much of the diarrhoea meds tablets once you start the stronger pain meds, so please watch out for that.  Getting half-way is a wonderful feeling, even though you get tired (totally knocked me out) but just keep counting the days and don't try to do too much.

    Over halfway!

    Irene xx

  • Hey  , this is great to read! As has already been said it’s good to hear you have a supportive team that you’re confident in & that you know there’s extra help there should you need it. Stodgy food will hopefully help with the diarrhoea & I really wouldn’t worry what food you’re eating just anything you fancy will do right now. Get plenty of rest & here’s to the countdown to the end of treatment you’re over the hump & every day is a day closer to the end. 

    Nicola 

  • Hi Carole, so good to read your update, and you're even further along at this point! Raised hands

    I've found your updates very informative as I approach my start date at last.  So thank you, and it's really good to know your review went well. I've suffered with chronic fatigue before so I fully sympathise with that feeling. Listen to your body and just rest.  Hopefully the sun will be shining again soon and you can find a spot to just sit, relax and get some helpful vitamin D. 

    Keep smiling lovely, the countdown is fully on to the end date now.  You're doing amazing! Sending a big virtual hug! Xx

  • Hello all

    So I am at end of week 4 and have just 8 days of treatment left. I feel so relieved I am almost there.  I am frankly dreading the next last week of chemo.  Am now on oral morphine plus paracetamol to manage the spikes of pain as I was not getting a good nights sleep  - was waking every 4 hrs when meds wore off and toilet time nearly wiped me out feeling sick and faint with the pain.  No more diarrahoea - now I'm taking the stuff to keep it all soft!  Very lethargic and worn out and hair coming out. In my head I wonder about undergoing torture like this but its a train I'm not getting off until the end!! I think just switch off and get thru it all.

    I saw an oncologist this week for review which was first since the doctor who said I'd not like him by the end (who I've since found out has officially retired but returning in a month as he loves his job).   I found it hard to talk to this one as never met him before and I have regular weekly reviews with the nurse radiotherapists which are brilliant.  I kind of felt disconnected from him

    Daughter was supposed to be helping me this week but has gone down with a virus so obviously she can't come round as the risk to me going into chemo would not be good. Positives are that my son's partner is pregnant with a baby boy due in October so my whole focus is going to be getting well enough to go to Italy for this birth (where they live). 

    Anyhow - there it is - not much longer!

    Love to all

    Carole 

  • You're almost done, Carole! You're pulling through this like a champ!

    I'm sorrry you don't have help at home, but better alone than sick. And a new grandbaby!!!!! What a marvelous motivation!

    Keep up with your painkillers and rest as much as your body wants to. You've got this!

    HUgs

    Suz

  • Great news that you’re almost at the end Carole! Time to hunker down & get through these next couple of weeks as best you can, if that means sleep, eat, repeat then so be it , do whatever you need to do, I slept quite a bit during the week following my last treatment & if I wasn’t sleeping I was either in an Epsom salt bath or rinsing Netflix!

    It’s disappointing that you’re not able to get the help you were expecting but I agree with Suz that you don’t want to be risking picking up any rogue germs right now.

    Such exciting news about your son & his partner expecting a baby too, it’s always great motivation to have something so wonderful to look forward to plus a trip to Italy, it’s one of my favourite places, Lake Garda is on my to do list! 

    Wishing you the best of luck with this coming week.

    Nicola