Just Going for my second R Chop chemo this week.

I am doing well thank you. I had a bump in the road back in September as one of my treatment ‘left overs’…… a heart issue caused by my final chemo kicked off big style and had me blur lighted to hospital on our way back North after visiting our daughter and family. But we have all the meds sorted out now and the old ticker is behaving itself

Hi Buttons2020

Thank you so much for your message.  

I am so sorry that you had so many terrible problems during your chemo, as you say R Chop although kills cancer cells is very toxic to the body and every body is different.  Thank you for taking the time to share your journey which has made me feel sad for you BUT it is helpful to hear that although you were so very ill you have come out the other side and hopefully getting better each and every day.  

I am having some struggles but thankfully not as ill as you were but I am still not doing any exercise like the guys (I try) and although I am positive most of the time still have a cry in the shower or in the middle of the night. it is as much as I can do to try and keep my home clean and tidy which somedays I feel I lose that battle, I am very house proud and an interior designer and my surrounding are very important to my mental health, especially as it has taken a lot of hard work to get here.

Buttons I wish you a full recovery and I bet you rock you new pixi hair style, please stay in touch and let me know how you are getting on.

All very best wishes and thanks again.

Verity xx

Hello Verity,

it’s lovely to hear from you. Yes it was a tough journey but I made it through & I am doing really very well . Please I don’t feel sad for me, I have no complaints with the care & treatment I received. It was first class. What made such a huge difference was the support & understanding from Clinicians, other patients, family & friends. 
That helped enormously. They were there when I felt so desperate & crying my eyes out or feeling I couldn’t face another day. They would just sit & listen, they understood. 

I just wanted to share my thoughts with you & to let you know that - you will have struggles, you will feel down & there will be many things you want to do, feel you should be doing but can’t. Not while you are receiving R-Chop. 

The fact you are keeping your home clean is amazing Verity - well done that girl , but on the days you feel exhausted, tearful please allow yourself to rest & have a bloody good cry - it is ok. I can appreciate your home & its appearance/ presentation being so important to you as an Interior designer, not being able to maintain it to your usual standard is only temporary. None of your hard work will be lost.  Throttle back, while you are receiving treatment & a while after. If you push yourself too hard your recovery will take longer.
That applies to exercise as well - if you can have a gentle walk without it causing you problems, that’s brilliant, but if you can’t, don’t worry about it !
Like I was advised by my McMillan Nurse Practitioner- listen to what your body is telling you & don’t beat yourself up. You will get through these tough days. Best advice I was given . 

When my hair first started to grow back it seemed to take an age then all of a sudden it put a spurt on !! I’m now loving my pixi style, it’s so easy & you save a fortune on shampoo & products

I will definitely keep in touch Verity, I am very interested to hear how you are getting on. We can chat away if you’d like to.

Sending my best wishes to you. 

Buttons xx 

Good morning Verity and good to hear that you have not been very ill during your treatment.

R-CHOP is indeed very toxic and needs to be to kill the cancer areas but there is fall out in our healthy cells as well but thankfully this all tends to clear once you are through treatments - it's not forever thankfully

It is indeed an emotional journey so off days do come along but the fact you are able to do some housework is amazing, well done. Small normal things like this will help you focus your mind and indeed help your mental well-being.

You may want to consider looking at connecting in with one of the many Lymphoma Action Regional Online Support Groups as there is nothing better than talking with a group of people who are on the same journey.

Sending you supportive ((hugs))

Hi Mike,  Nice to hear from you hope it's been a beautiful day where you are, it's glorious here very cold but blue sky and sunny went for a short drive and a walk, (all to steep where I live at the moment) come back revived.

I am due to have my third chemo on Thursday, on the last week  I start to feel a lot better and have some energy (not masses) but enough to feel a little normal and the excitement of life comes back.  This has happened twice with both of my chemo so I think I maybe finding a pattern.

Thanks for the information, have a great weekend.

Love the Mandela quote.

Best

Verity

Hi Trooper,

Thanks again for all the support, it is so nice to be able to hear from people especially when they are fit and healthy and still take the time to support others just starting their journey.  I am was starting to feel quite confident and positive,I hear about lumps melting away quickly, but other than the mass in my retroperitoneal (pocket behind lungs etc) which I can not see, I have a small lump under my arm which only appeared just before I started Chemo which is still there and my hair looks as if it is starting to grow back just soft down. Now I am in a slight panic as I am frightened that  the Chemo isn't working.  

I am going for my third R Chop end of this week so hopefully they can reassure me, in the meantime maybe this has happened to others.

Anyway I know this a rollercoaster and this is a brilliant helpful community especially when you are on the downward spin.

Take care

Verity 

Are you on six R-CHOPS every three weeks Verity? That was me but I had 2 x Methotrexate infusions as well to stop any of those pesky rouge cells entering my cerebrospinal fluid (one of my neoplasms was growing on my spine) b****ds go anywhere they please! Lol! 

That required 2 x two weeks in hospital stays...drove me bat s*** crazy with boredom!!

Anyway, I got to chat with a newly qualified consultant and we discussed the treatment. He told me how incredibly effective R-Chop was and how it melted the cancer cells away like sprinkling salt on ice! 

So remember those words ...straight from someone who really knew his stuff. I still recall him being somehow still amazed himself by how effective R-chop is!!

I assume you had a staging PET/CT scan,  With the radioactive sugar? I was riddled with 'tumours' aka neoplasms/lymphomas ..which is normal as our cancer is zooming around our body via our lymphatic system. 

The lymp system ie our white blood cells are not pumped like our blood is by the heart...but rather it is transported by the movement of our muscles...it kinda gets 'squeezed' around our body as we move. But it reaches everwhere hence a growth can occur anywhere.

Anyway, you should be due another scan anytime soon...your 'mid term' scan. These are not always done...I read that somewhere three years ago. The reason being...they are NOT really necessary and ONLY an end of term scan is really needed.

But if you do have a mid term scan, ask for your Deuville score. This tells you what the chemo has done...Ie has it done jack s*** (highly unlikely) has it reduced your lymphomas (highly likely) or has it destroyed them so the scan shows NED (No evidence of disease) (I dont know the likely hood of this as Ive not read up on it...but I was NED!)

That does not mean I was cancer free per se...because the PET/CT scan can only show active cancer cells in a group..I was told ball park about little finger nail size! 

So neoplasms smaller than that dont show. That said NED at mid term scan is very indicative of a good final outcome.

Interestingly, there is a phrase called scanxeiety! Ie getting anxious waiting for your scsn results! I NEVER had this at all, because I knew I had a temporary illness!  That said, I am very 'unrealistic' as has recently been pointed out. 

I have studied psychology in depth for almost fifty years now and btw I am extremely...extremely cynical..So I dont believe in wu wu, new age nonsense or bullshit...only what works and is/has been proven to work.

By that I mean documented evidence and Ive read and studied the science, the books, the papers and the journals! So when I say be fascinated not frightened...it really IS based on reality that WILL affect you and not some hocus pocus nonsense.

Its weird how my positive mind set and knowledge helped me massively and how others who were realistic...had a truly dreadful time. 

Maybe I was just incredibly lucky and thry were unlucky. ...maybe? 

One factor is without doubt, I stayed very fit all my life. I eat well, I trained and am the same weight, chest and waist size I was fourty years ago. So an invincible positive mindset and fit as a butchers dog born in 56 actike a teenager and pass for years yonger than the date on my birth certificate.

Sucess leaves clues!! Remember to be Unrealistic!! You will be fine!! x