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What to do , after chemo 4 med then 2 meds

I have had chemo 4 med 4 sessions Atezolizumab , Bevacizumab , Paclitaxel , Carboplatin ,dropped to 2 meds , 4 sessions for 2 meds now cancer is growing again , can't go back on chemo for at least 5 to 6 weeks, cause of covid 19 , feeling down & I can feel my lungs getting worse , trying to stay strong, but tiredness creeping up on me ,

I don't know how to fight this anymore ?

Comments

  • Blanka_CBlanka_C Posts: 371 Community Admin

    Hi @ColinsPlace,

    First of all, a very warm welcome to our community. I'm so glad you've found us, this is a friendly space with lots of supportive people around.

    I'm very sorry to hear about your situation. I absolutely understand how you feel. A friend of mine has breast cancer and her treatment is delayed, which is affecting her mental health a lot. She is finding it hard to focus and to stay strong.

    I think the coronavirus is affecting a lot of us in this community mentally & emotionally. I have anxiety & depression and even though I'm on medication, my mood swings have never been so severe, ever.

    I know mine is different to your situation, but from a mental perspective, keeping extremely busy is helping me a lot. Now, this can be very hard, as sometimes all the negative thoughts are creeping up on me (insecurity, my friend living with cancer who I can't go visit and help, etc), but I have something I always do. I have a list of 15 things I like and whenever I start to feel down, I quickly look at that list and pick something to do (reading, exercising, listening to music, cooking something new...the list goes on). This keeps my mind busy and forces me to focus on one activity, not letting the negative thoughts in.

    Funny story, I once tried to include 'solve algebra equations' in my list, I don't even know why. I don't even like Maths, haha! But thought something different would be good for a change. Well, I got angry after 3 minutes, so I guess it didn't work.😁

    On other note, we have Karin @KarinSieger, our lovely emotional wellbeing advisor on here who might be able to help you. I have tagged her in this discussion, so she will get back to you as soon as she can.

    In the meantime, I have tagged two of my friends, Lou @Sunshinedaff and Rob @RobertA, they're both always up for a chat. I know that sometimes meeting people who are going through similar situations can do wonders to your mental health.❤️

    Please stay safe & strong. There's always a pair of ears on here, so please feel free to post anytime. We also have a couple of fun discussions going on in our Cancer Coffee Break section, which might help you take your mind off things.

    Love,

    Blanka x

  • KarinSiegerKarinSieger Posts: 98 Emotional Wellbeing Advisor

    Hello @ColinsPlace

    I have seen your post and @Blanka_C response. As she mentioned I am the emotional wellbeing advisor with LiveBetterWith, a cancer counsellor and I have also been diagnosed with cancer twice.

    I too had chemo and because it did not agree with me, the cycles got cut short. I was very frightened about it. I know my situation is not yours. Cancer, cancer treatment and now coronavirus on top of all of that - it feels too much to comprehend and deal with.

    It sounds like you have had an up and down experience with your chemo, changing meds and the cancer growing again. It must be an enormous roller-coaster.

    In your like in many cases, chemo has been stopped / delayed, as it may be felt that the risk from COVID19 is higher than the risk of temporarily delaying that particular treatment. None of this is ideal, I know, and it is a challenge to get through this time. It makes one feel frightened, helpless and perhaps also angry.

    You mention that you feel your "lungs are getting worse". I am unclear whether this means you have lung cancer, other concern regards your lungs or COVID19 symptoms. If in doubt, do reach out to your oncology team and explain what you are experiencing, including any changes.

    In terms of your emotional and mental wellbeing, which is very important too, it sounds like you are very anxious and stressed - understandably so. Who wouldn't?!

    Remember, chemo can also interfere with how we feel. Have you come across chemo brain? More about it on my website here

    But the main job for you now while treatment is being delayed or re-planned is to find ways of de-stressing, managing anxiety and trying to stay calm. Because if you don't, you will burn valuable energy and this can weaken your immune system.

    It might help not to look at it as 'a fight' (because that is exhausting and frightening).

    I suggest the following:

    (1) For the next 5-6 weeks your focus needs to be on caring for yourself. Be your own nurse.

    (2) You need to calm your mind and your body. Because then your breathing will become more regular and your chest less constraint.

    (3) It is really important to block negative thinking as much as you can. Because it does not help one single bit. It only helps to heighten tension and then the vicious circle starts all over again.

    (4) Try and be single minded about not doing anything that causes stress and upsets you. Don't dwell on what could /should happen, because unfortunately this is the situation we are at with COVID19. I am sure your medical team will do the best they can under the circumstances.

    (5) Do not focus on or picture the cancer growing, that can drag you into dark places.

    Your top focus and job is to find ways of regaining calmness and keeping as calm as you can for the next weeks.

    This might sound impossible, but it is a top job and an important 'medication' for your emotional and physical wellbeing.

    How?

    You may already know or do some things that can help.

    ✅ Look up breathing exercises on YouTube.

    ✅ Listen to calming music. For example https://www.youtube.com/user/TheMeditativeMind/videos on YouTube have a whole range of free background music. Even if you do not meditate, don't be put off, lie down comfortably and give it a go.

    ✅ Have a daily structure and routine.

    ✅ Do gentle physical exercises, go out if you can and are allowed to.

    ✅ Eat healthily and well and stay hydrated.

    ✅ Avoid stimulants like sugar, coffee, nicotine, arguments, ....

    ✅ Have rest and avoid anything that is upsetting especially before going to sleep (eg news)

    ✅ Watch, read, listen to feel good films, stories, audio books.

    ✅ Add whatever else you like.

    Remember, all of this is really important and will make a contribution to your wellbeing. Most important of all, you need to give it a chance and believe in it. If you have a bad day, then that's ok, too. Try and do as much as you can, don't pressurise yourself.

    See how you get on, and feel free to keep in touch.

    With very best wishes for you.

    Karin 🌱

    Check out my self help articles and podcasts on my website KarinSieger.com

    Karin Sieger
    Psychotherapist | Cancer Counsellor  | Reg. MBACP (Accred)

  • LouiseJLouiseJ Posts: 686 mod

    @ColinsPlace @KarinSieger @Blanka_C

    Hi,

    I my name is Lou, (I am also Sunshinedaff), I was just about to write to you and I saw Karin's messgage.

    I cannot add anything to what she has written and I do wholeheartedly agree with everything she has suggested to you.

    I am so glad you have found us here, as this community is a brilliant place to find support and encouragement. You have clearly been through a very tough time recently with the chemo and it's effects, add in Covid19 and the pressure has intensified. I can understand how scary and frightening it must be having your treatment postponed for a while.

    Trying to adopt some of the suggestions while you are in lockdown, and continuing on afterwards, will help you through this time. Definitely contact oncology to update them on your health, if you are 3 weeks into the 5/6 weeks delay period, what you are experiencing with your lungs and the tiredness may be information they need to know about.

    It is ok to rest, especially if extreme tiredness is overwhelming, your body is still being effected by the treatment. Hopefully you will have a garden where you can get some fresh air whilst you are in lockdown, thankfully we have had some good weather to be able to do that.

    Even if the cancer is different to others, mine was breast cancer, we all do understand the impact it has on our lives and our family's lives.

    We have lots of 'non'cancer' chats going on too, if you look in the Cancer coffee break section. Sometimes we all need a break from 'cancer' talk, and just chat about other stuff.

    Please come and chat again, we are all routing for you, take very good care,

    Lou x

  • RobertARobertA Posts: 1,197 mod

    @ColinsPlace @KarinSieger @Blanka_C A @LouiseJ

    Hi there, my name is Rob and I would like to add my welcome to the group.

    I really can't add anything to the advice and suggestions already expressed, but I also had a battle with tiredness and depression following my diagnosis and treatments for cancer. The added concerns of Covid 19 and its effects on your treatments is just another pressure unfortunately.

    Finding this community is one of the best things that happened to me. It is full of lovely people who understand how tough living with cancer can be. We do like to chat and to support each other and you can say anything you want and we will listen. I hope you will keep in touch.

    Rob

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