For anybody in despair !

[grizzlebear]

Just thought i would pop in and say hi to everyone. Also thought it might be nice to do a little update in the hope that it might in some strange way help somebody.

I had chemo feb 2014 after a very quick diagnosis. People who have read my posts will know that i didnt really have a nice time at all during chemo and it left me with loads of issues. The health and fatigue issues that follow chemo are something that i think we all find very frustrating, we all think the day chemo ends we are somehow cured when to be honest we are probably at our lowest and need to accept that our body is rebuilding from its foundations.

I really struggled with anxiety after chemo and was very down and lifeless. I think i got to the point of thinking "why bother" with everything. I was 46 and told i was going to die, then oh forget that you can live a little longer then oh you have to come to hospital every 4 months so we can remind you of it all.

Ive never really suffered anxiety in the past and i was shocked on just how controlling it can get. I also had uncontrollable nausea most of the time. I would make any excuse to not go anywhere or do anything.

Last September my GP changed and i had see the new GP about a cyst, he mentioned he wasnt happy about me being on any form of meds and that my bloods were all 100% fine. Therefore the hospital were just filling me with stuff i didnt need. I came off all the meds and started to feel loads better.

I dont know why or how but i sort of started to think i was just waiting to die and not trying to live.

Anyway over the last few months i have got myself an Audi TT and started to love just going out on weekend roadtrips. Ive done all the decorating jobs over xmas and we have made plans for lots of little breaks away.

The purpose of this post is for anyone really feeling the despair and fear that i did. Please have hope that it wont last forever. I have no idea what changed for me but i would bottle it if i could. It really feels good when you find yourself after months of blind panic thinking your locked in hell.

Sorry if i have rambled on but i just wanted to offer hope to 1 person.

The bear x

[Newdawn Administrator]

What a thoroughly warming and inspirational story and it's made me smile. So glad you've got your joi de vivre back. Fantastic to hear the Bear roar again!!

Long may it continue!

Newdawn

[jackhammer]

Good post, thank you. Great to read your back in the saddle!!

Best regards,

Jack

[PaulaS Volunteer]

Hi Grizzlebear, I'm so glad you're feeling so much better. Thanks for sharing.

I was very interested to hear that your GP decided you didn't need the meds that the hospital were keeping you on, and you started to feel much better when you stopped them. Could you tell us which these were?

Sometimes we have no choice of course, and need to be on certain meds long-term, but I suspect that some meds do cause loss of vitality of both body and mind, and might not always be necessary. Or alternative meds might suit us better, and not have the wearying side effects.

Thanks again for sharing your good news

Wishing you well

Paula

[Hidden]

More power to your bear elbow🐼 sorry, I've only got a panda bear!

[grizzlebear]

Aciclovir which i was told was stupid as its to stop herpese and im married and very faithfull lol. And lanzoprozole for the acid due to the sickness & nausea which i was told was the reason i kept getting water infections and my b vits were dropping.

[Cllcanada Top Poster CURE Hero in reply to grizzlebear]

Herpes is a family of viruses ..genital herpes being only one...

Shingles is a herpes virus reactivation, from chicken pox virus we had as kids... and not uncommon in CLL

Acyclovir is used as a prophelatic against reactivation of all herpes viruses...

mayoclinic.org/diseases-con...

[PaulaS Volunteer in reply to grizzlebear]

Thanks for your reply, Grizzlebear. Very interesting. But I'm very surprised you were told that because you were married and very faithful, it was "stupid" to take Aciclovir. As Chris has said, Aciclovir is given as a prophylatic to prevent many herpes viruses - including shingles (and being faithful in marriage is no protection against that!).

However, from what I've heard, Aciclovir isn't usually continued indefinitely after treatment has finished, so I can understand your GP suggesting you stop it. Though I would have hoped that your hospital doctors would themselves have made a decision re stopping the Aciclovir, based on their monitoring of your immune system (testing neutrophils and immunoglobulins etc).

Anyway, you stopped it last September and it sounds like you haven't had any viral infections since then, so that's great.

Re Lansoprazole - I felt much better after stopping it too. It was giving me sun sensitivity/nausea, and possibly depression due to low B12. I found other ways to deal with my acid problem, after stopping the Lansoprazole.

Thanks again for sharing your story. It will be so encouraging for others who might be feeling like you. I loved the picture of you getting decorating jobs done and planning for little breaks away.

Paula

[SouthFloridaLady in reply to grizzlebear]

Have your Vitamin D level tested through a blood test, D3 is better than D2, if required. I live in ' sunny Florida' and need to take 50,000 units a week. Just a thought! Google it.

[alice111]

Lovely post .. cheered me up xx

[Justasheet1]

GrizzleBear,

That was awesome. Thank you.

Jeff

[Peggy4]

Lovely positive post. Completely agree that we should focus on planning for living, not waiting to die. Peggy

[Cammie]

Bear,

Great to hear you are back enjoying life and a boy racer to boot!

I know you had a rough time old friend but that's done and dusted now get on with life enjoy the new start.

Attitude is a major part of dealing with our situation and we must educate all our new friends about this.

Great post great attitude!

Geoff

[Kate9295]

So glad you are feeling better! It's a long and winding road....

[grizzlebear]

I agree attitude is king when dealing with this. Re the aciclovir i have never had any related illness in my life. Dont think ive ever really even had cold sores. I also think the lanzoprazole was a big part of my overall health issues.

[Kimsome]

How lovely to hear from you. God bless you and all those that you've helped through your post.

Kimsome

[jangreen]

Hi I couldn't agree more with the feeling after chemotherapy. It took me about a year to recover. Also I don't think the follow up care from hospital is any good. There needs to be a hand over from treatment to GP. I'm sure the medical profession would also like that but of course costs always come into it. Best wishes and good luck for the future.

[Seven6]

Thank you for showing the passage from despair to beginning to embrace life again.

So pleased you are succeeding in moving away from that awful place. Well done!!! This will I think be an inspiration to others.

Seven6

[loran6t8]

Hi Bear

thank you for sharing your journey - its good to see you are now on top and living to the max - nice car!!

Loran

[Bats1]

Thanks for sharing...such true feeling...it is hard to deal with the disease.

[Calopteryx]

Hi

Thanks for your post. As someone about to enter the dark tunnel of treatment, it's good to know that there is light at the end of it even if it is a long time coming. I'm hoping there is a nice car for me at the end too!

Great to hear you're doing so well.

C

[meemsdream]

You rock Bear!!! How nice to hear how well you are doing right now! I hope we hear from you now and again. We all need some positive input. Keep on keepin on! Stay well.

Maria

[splashsplash]

I've had 2 x 6 month chemo treatments and each time it took six months after finishing to feel completely 'over' the physical and emotional devastation. Really good that your post shows there is life after chemo because at the time it feels that it goes on for ever.

I think we'd all put up with any amount of ghastliness from chemo if there was a chance of it 'curing' us but as I was told by my consultant 'the Leukaemia always comes back'. Knowing this it's hard to logically process voluntarily taking such toxicity into our bodies.

The news coming thick and fast about successful treatments with the new KID drugs seems to warrant a chemo free future somewhere in the next few years.