4th chemo today & struggling

Oh you poor dear girl!!!

I too, have an Autoimmune disease called 'Polymyalgia Rheumatica!' Had it since my early 40's, so about 9 years now+ played absolute havoc with my treatment too!!! I will have this condition for ever I think. Coming to terms with adversity & pain have made living with it much easier. My rheumatologist monitors me about every 3-4 months, including blood test and follow up visit a week later. It really annoys me but I am alive which is all that matters I guess? Lol!!! Acceptance with anything like illness or suffering helped me so much. I seriously considered offing myself on occassion with the PMR. So I decided to get off my butt & get a job. I worked at K Mart for 4 years & no one even knew I was ill. I just kept it to myself. I loved the work but when I got the cancer it got a bit too much for me. They were great giving me the odd 4 hour shift, but ultimately I just rested.

You sound so much like how my treatment went hun. I had dramas with my white cells & had to have a jab in the butt with every treatment. I was too chicken & got my GP to do it. Lol!!! I had a PICC line but it caused dramas within itself. Blah! Blood Clots & other tantrums.

My famliy were all trying to help me & sometimes I accepted it, but sometimes I just wanted to be left alone. Up & down on that emotional roller coaster you talk about? When I first started to lose my hair I felt lost, alone & totally ugly & pathetic!!! I just had to stop myself from being an emotional wreck. By reading anything I could find & doing puzzles. Visiting friends & family when I felt ok helped me too!!! Light, gentle exercise in the fresh air was good too!

The doc requested 'Genetic Testing' which gave me some peace of mind where my children were concerned. I don't have mutant genes apparently? But of course there are only some of the BRACCA genes they can test.

Ask your doctors everything & anything you need to know about your treatment. I always took hubby with me with the chemo except the last one my youngest went with me. It sure gave her a greater appreciation of my pain & sickness!!!

 Just keep crossing off those days on the calendar huny. Small goal maybe but the most important one you can do at this time!

And REST as much as you can.

Take care always & good luck. OXOXMiaOXOX

Hi Mia 1965. My first treatment was horrendous. I could not keep anything in my system for 9 days and ended up in hospital for 5 days. Next treatment was better as they gave me the dissolvable anti nauseas but I was still nauseous for 12 days, vomiting for 6. I also started giving myself the neulastin injection as my white cell count dropped to zero. So then they decided to change the carboplatin for cytosomethingorother. So much better but I ended up with shingles. I had a portacath installed on Thursday and chemo straight after. I have been a bit more nauseous this time round but a fair bit of pain with the port. It just seems to be like the magic pudding. I ended up at the hospital on Tuesday as I had a bleed. My platelets have dropped but not enough for a transfusion unless I have another bleed. Every treatment has been so different. I ended up with a cold and conjunctivitis this time too. I am going to ask for some counselling at my next treatment. Just knowing that others feel this way has made me feel better. My anxiety about my treatments has increased as I just don't know what to expect. I have really struggled with the exhaustion this treatment. I have been a good girl and taken all of the meds when I'm supposed to. Years of experience. I have had autoimmune pancreatitis for the last 7 years and I have to be very strict to manage that. And of course that complicated my treatment now. I'm on TCH for the cancer. I just couldn't believe that I went from upbeat, still managing to work part time, still doing a fair bit of what I usually do to a sobbing, can't do anything because of exhaustion, feeling completely useless, lonely, frustrated, scared all in the space of a week. I have certainly freaked my family out this week and I think they are wondering what the hell is going on too! I have told them that I need more support and need to be able to rest more. Boy they really do mean it when they say this a roller coaster! I have been writing down things for the doctors so they know exactly where I'm at. I find it quite cathartic. It's just so hard when you are a complete control freak to be so out of control! I think the rest is a huge thing I need to get my head around as well as asking for help. Oh it's all learning curves. Funny you should say that you weren't going back after the first treatment. The onc said to me that at least I came back and I couldn't believe it when she said lots of people don't. Up until this week I have been telling myself that it is only 6 months out of my life and if I have to be as crook as a dog then so be it. It's short term pain for long term gain. Just giving myself permission to feel this way has uplifted my mood and I don't feel quite so pathetic. Thanks again for the wise words and support. It really has helped. I hope your friend Anna comes through it all ok. Xoxox

Hi Mia 1965. My first treatment was horrendous. I could not keep anything in my system for 9 days and ended up in hospital for 5 days. Next treatment was better as they gave me the dissolvable anti nauseas but I was still nauseous for 12 days, vomiting for 6. I also started giving myself the neulastin injection as my white cell count dropped to zero. So then they decided to change the carboplatin for cytosomethingorother. So much better but I ended up with shingles. I had a portacath installed on Thursday and chemo straight after. I have been a bit more nauseous this time round but a fair bit of pain with the port. It just seems to be like the magic pudding. I ended up at the hospital on Tuesday as I had a bleed. My platelets have dropped but not enough for a transfusion unless I have another bleed. Every treatment has been so different. I ended up with a cold and conjunctivitis this time too. I am going to ask for some counselling at my next treatment. Just knowing that others feel this way has made me feel better. My anxiety about my treatments has increased as I just don't know what to expect. I have really struggled with the exhaustion this treatment. I have been a good girl and taken all of the meds when I'm supposed to. Years of experience. I have had autoimmune pancreatitis for the last 7 years and I have to be very strict to manage that. And of course that complicated my treatment now. I'm on TCH for the cancer. I just couldn't believe that I went from upbeat, still managing to work part time, still doing a fair bit of what I usually do to a sobbing, can't do anything because of exhaustion, feeling completely useless, lonely, frustrated, scared all in the space of a week. I have certainly freaked my family out this week and I think they are wondering what the hell is going on too! I have told them that I need more support and need to be able to rest more. Boy they really do mean it when they say this a roller coaster! I have been writing down things for the doctors so they know exactly where I'm at. I find it quite cathartic. It's just so hard when you are a complete control freak to be so out of control! I think the rest is a huge thing I need to get my head around as well as asking for help. Oh it's all learning curves. Funny you should say that you weren't going back after the first treatment. The onc said to me that at least I came back and I couldn't believe it when she said lots of people don't. Up until this week I have been telling myself that it is only 6 months out of my life and if I have to be as crook as a dog then so be it. It's short term pain for long term gain. Just giving myself permission to feel this way has uplifted my mood and I don't feel quite so pathetic. Thanks again for the wise words and support. It really has helped. I hope your friend Anna comes through it all ok. Xoxox

Hi Hun,

I have to admit, one minute you know you can do it, the next??? All doom & gloom!!!

Part of the process darl!!! I seen a psychologist during my treatment & it does help a lot. Cancer is a mindset & the right frame of mind is sometimes not easily achieved. I am in my third year of remission this year. Easy for me to say that you will be fine! But I told the doctor after my first chemo to shove it where the sun don't shine!!! I litterally told her I was not coming back to my husband's horror!!! They eventually talked me around & put me in hospital which made a big difference. I was still feeling like crap 10 days after the treatment & wanted to end it as a result!!! It was my fault because I thought I did not need the 'In Between' Medication!!! My mind thought it knew better? Lol!!! But it did not of course!!! New drugs are coming out all the time, & luckily for me they had a new one which made it easier to cope with the nausea. But just when you think everything is better, new obstacles hamper your treatment!!! I found using a diary to write down absolutely everything that happens including your temperature & side effects, helps the doctors to tailor your treatment better!!! A friend of mine form K Mart, whom I used to work with, is going through treatment as we speak. Poor Anna, is having the same drugs as what I had to endure, but is not suffering from nausea as much!!! It is the anti-nausea drugs I think? I had FEC-D. The doctor did say that if you suffered during pregnancy with morning sickness, then this can give you an indication of how you will react to chemo drugs! And don't forget to REST, REST, REST!!!

Everything needs to rest!!! Body, mind, patience, everything!!!

Just remember that the light at the end of the tunnel might not be a train after all but the end of your treatment, finally!!!

Take care always & let me know how your treatment & how you are going too Cook???

P.S. Asking for help is a sign of strength & not weakness OK!!! :)

Hi Cook,

 

Yes, I just want you to know that It does get better, just have a little more faith than usual in yourself ok???

If you want to cry/ Then cry!!! Punch a pillow!!! Scream at inanimate objects, what ever it takes!!!

This is the hardest thing you will ever do so don't think you have to act a certain way ok??? Other people have to make allowances for your pain, physical or mental??? Not the other way around!!!

Good luck and take careOXOXMiaOXOX

 

 

Hi Theresa, I'm so sorry to hear you are having a hard time with the latest chemo :(  I also recall feeling down in the dumps and really lethargic after my 4th chemo but something that kept me going was a calendar that we (as a family) would cross off as I got through each one, ie: 1 chemo down, 5 to go.... 2 chemo down, 4 to go and so on.  I could see the light at the end of the tunnel and it was a great feeling.  Let the tears fall and talk as much or as little about how you are feeling - whatever makes you feel a little better.  Listen to your body and rest when you can.

I am coming up to 3 years clear and am feeling better fabulous :)   I just want you to know that as hard as it is right now, you wil get through this. We are all here supporting you :)

Sending you lots of love and strength

xxxx

I have one more chemo treatment to go in two weeks time and like you this week I have been very teary.  A week or more is a long time to feel fatigued and unwell and it it is hard to think we will ever feel vitality again.  That is the question I have been asking myself the last few days.  I keep forgetting about the people I have met who have come out the other side of this and have gone back to work and are enjoying a full life. 

This is not an easy journey and you have every right to shed some tears and as said by Robyn and Deanne you will feel better for having done so.

Try to talk to a girlfriend, sister or mother  every day if possible.  Keep your mind distracted with reading, puzzles or what every you like.  Exercise and fresh air is fabulous.  At the end the day look back  and pat yourself on the back for the things you have done and give thanks and know that tomorrow or the next day will be even better.

Big hugs

Joy x

 

I am three quarters of the way through chemo now and just starting to feel the end is in sight and with that my mood has lifted. I haven't been posting recently either as I too was feeling pretty down and sick to death of being in a long dark tunnel with nothing in it but work and chemo. No time for fun, friends or anything except just getting through. And I was so fed up with never feeling well, especially when I went from three weekly FEC to weekly taxol. But things are looking better now. Just three more weeks until my last one and I know I can hang in that long. So I can really relate to how you are feeling, but all I can say is time does pass and we will get through to the end. I know that a rich and full life that I will be well enough to enjoy is there waiting for me when this is over. It is just hard to imagine it on the dark days. Hugs Viv xxxx

Like Deanne said,halfway is hard.You are neither here nor there.The cumulative effects of chemo really play havoc with your emotions,and this is where you are finding the tears are coming from nowhere.I can remember at that stage,thinking that I would never feel normal again!I used to cry for pretty much anything and nothing,and some days feel very sorry for myself.I think it's healthy to feel like this,and usually after crying,you will find that for a while,you feel a little better.Try to get outside,because fresh air and blue sky do wonders for the soul:) Take care,and stay connected on here,as we can help you through this.xoxRobyn

Halfway is hard because you are worn down with it all but still have just as far to go. Try not to look too far ahead. Sometimes I told myself it will be better tomorrow or in 3 days or whatever and tried not to think of how many more chemos to get through. It really does help if you can have some sort of reward, something nice to look forward to. It can be hard but there is usually something you can concentrate on that makes you feel a little bit better. It really is a roller coaster but for every down run there was always an up time too. Hope your up time is on it's way! Take care. Deanne xxx