Hi Christine,

What an absolute nightmare for you. It sounds like you've chosen a beautiful place to live which could be destroyed. Finding the energy to fight can be hard at the best of times but not at all good with a low immune system, I wish you the very best. We have a lot of wind farms in Norfolk, most out at sea - no problem, but the ones near peoples homes dramatically change the landscape, I personally don't find them attractive! I think land owners make a lot of money out of them and the jury seems to be out on how effective they are anyway.

I wrote to HR, she kindly wrote back to me on Saturday and said she will sort it out, I was quite overwhelmed with gratitude!

Down to 25mg steroids for 2 days - yippeeee, then off.

Wig bought and it looks fine, I've always wanted sleek hair!

Sending positive thought in your fight - on 2 fronts

Best wishes

Sara.

Hi Sarah,

How are you doing? Hopefully off the steriods and feeling somewhat recovered from the chemoby now.

So glad HR probs are sorted now, what a relief. I am just chilling today as I am recovering from my day of Retuximab yesterday, I usually feel rather tired for a few days after that. Only one more to go now, on Christmas Eve, then back onto the "watch and wait" routine. That expression alway seem to contain a certain menace to it to me!

Thank you for your positive thoughts,

Best wishes,

Christine.

Sorry Sara I have just realised that spelt your name wrong, Please accept my appologies,

Christine.

Hi Christine,Hope you feel better soon after Retuximab.

I felt unwell for a couple of days after the steroids stopped- achy bones, abdominal pain, headaches, getting better now. I looked up steroid withdrawal and lots of people had the same,.I was on a high dose for about a month this round so I hope next time it won't be so bad. Or- it could have been me feeling the chemo without the mask of steroids!

Just wondering about the Retuximab, is it every 3 months? Sounds like you cope with it but feeling tired - I hope you feel better soon.

I don't like the whole medication thing, it's weird to go from nothing to so much and know I am very likely to need chemo again at some point. Also I'm very grateful to it, my spleen seems to have returned to normal size and lots of lumps in my neck have gone!!!!

I know what you mean about "watch and wait" it's a bit of a black cloud on the horizon. Before I was diagnosed I read about W&W and thought that would be just my luck to deal with that. I'd never heard of it before and I guess like most people thought all cancer needed immediate treatment!!! Ah well - I live and learn!

Any news on the wind farms - hope it goes well for you

Best wishes

Sara (At school I was known as "Sara without an H !!")

Hi Sarah,

I remember the aches and pains well, this being the third week hopefully you are feeling more human before they knock you back agaIn next week. The Retuximab is every 12 weeks for me as I have been treated before, if it was my first time it would be every 8 weeks. I find it knocks me about a bit for about a week then things improve, but it is taking longer now I have been on it for so long. I am so glad to hear that your lumps have gone that sounds like a very good sign. All these pills ect. when I first had my bag of extras I said it was penance for all the pills I had never taken in the past, never been one for much medication, always had the philosophy that most things get get better in time.Unfortunately our wee problem won't!

I never went on the watch and wait thing to begin with as my nodes were in rather naughty places so started chemo strait away. When I read about it, like you I wondered what they were on as I too had always heard the mantra of early diagnosis and treatment.Then it was explained to me about limited weapons in the arsenal and needing to eke them out, only using when really needed and it began to make sense. It's an awful lot to get ones head around to begin with. The expresion still holds a certain menace though!

Windfarm MD is coming to see us next week, rather dreading that, after all we are in the way of him making millions.

Internet is playing up today so I had better post this while it is still playing the game.

Best wishes,

Christine.

Hi Christine

Feeling much better now - ready for next treatment!

I had a meeting with an oncologist consultant at a charity who offers research on other therapies as well as chemo, clinical trials and so on - Any way, he gave me a paper to read regarding FL,  you may be interested. It's something I will use after treatment with R-CHOP and Rituximab maintenance.  I tried to copy and paste it onto here but couldn't!

Functional foods in health and disease 2011 1(12):525-544

Curcumin and ECEG supress arpurinic/ apryrimidinic endonuclease 1 and induce complete remission in B cell non-hodgkin's lymphoma patients

If you put top line into google the research comes up - very interesting

This guy set up the charity - Star Throwers, if interested you can read about the charity via their webpage.

Good luck with the windfarm person

All the best

Sara.

Hi Sarah,

I am glad you were ready for CHOP number 2 which you must have already had by now. I hope you are not feeling too rough. I am sorry not to have replied before but on Friday afternoon I went to thw Doctor feeling very unwell and she sent for a ambulence and I ended up in A&E and have been in hospital until this afternoon with an infection that got into my blood. I am feeling much better now but rather weak.

I will have a look at that webpage, thank you for the info, it sounds very interesting.

Windmill man had to be cancelled as he was due today and we just did not have the time and I am not well enough to cope with him. Still will have to deal with him soon.

Very best wishes,

Christine.

Dear Christine

Really sorry to hear your news, I hope you will recover soon, take gentle care ((hug)).  Another unwelcome part of the treatment to deal with .

I had 2nd chemo on Tuesday, another allergic reaction to Rituximab but they acted quickly and all ok. Bloody hair coming out by the handful! I cut it down to the scalp today - very attractive!! My granddaughter said my wig is very nice, just hope she doesn't pull it off in public, she is 3 next week so still a bit grabby.

The consultant at Star Throwers was good to talk to and the (very small) charity work with people all over the country, certainly worth a look. I started to read the paper, it's hard going but looks interesting, basically Tumeric and green tea extracts in the correct dose.

Now am waiting for next PET CT scan to see how treatment is working and then if ok will have 3rd chemo in 3 weeks time.

Sending you lots of positiveness, hope the windmill man backs completely off, both sides!!

Take care

Sara

Hi Christine

So glad to hear you are getting better, I now have a better understanding of sudden illness due to chemo.............!!

I was doing fine after 2nd chemo and on Sunday we went out for the day. On the way home I felt pain in my lower back, got home and fiddled about for a bit then slept for an hour. When I woke up I was shaking and felt ill. Temp was 38.8. I couldn't believe reading so took again - the same. I panicked!! and realised "I'm ill"!!! I called 24 hour chemo nurses and was admitted to hospital due to  an infection -? UTI - I ended up having a blood transfusion, white blood cell injections, IV antibiotics and fluids, I felt really poorly and finally came home yesterday evening. The staff and my consultant were fantastic, I felt well looked after. I'm on the mend now and feel human again.  Chemotherapy is one double edged sword!!!

Luckily my sister and mother were staying for the week and arrived on Monday as planned so visited and sorted out stuff - on the negative side we weren't able to do anything planned!!!!!!!!

I have my PET CT scan next week so hope all will be ok with that - spleen is  definitely much smaller but will just wait and see what the results are as I have no idea what the lumps in my body are up to!

I am sleepy at last so back to bed

Take care

Sara