update on Azacitidine

[beetle]

I’m sure my local haematologist is thinking “be careful what you wish for”. In recent communications with Claire Harrison she tells me that the the fourth cycle is supposed to be the turning point when your body starts to adjust to the drug. I hope she is right as I’ve just finished the 4th cycle and I’m praying for an upturn. Cycles 3&4 have put me in hospital. After 3 it was constipation und UTI so this time I started the prunes ( yuk) and laxatives from the beginning.

After cycle 4 I started to feel pretty rough and realised I had a fever during the day - not one of my common evening spikes and with likely severe neutropenia I had to go back in. My neutrophils were 0.26 and platelets at 16!! I have now been on IV antibiotics for 3 days and I’m hoping if my temperature stays down I can go home today or tomorrow! It’s never good when you become so well known in A&E that the nurses wave and say hello again!!!

I have noticed fatigue has gone to another level. I thought it wasn’t great before but the weeks during and after chemo it goes off the scale! I hit rock bottom last week when I found myself yelling at my partner for behaviour that is part of his dementia . I felt so guilty but the wonderful haematology nurses here sat down with me and listened and allowed a few tears. Hopefully after a couple a days away from him I’ll be more tolerant when I get home

Still, I’m still here and as usual stubbornly refusing to accept that I’m perhaps really quite sick. The sun is shining today so that is always a plus in my book. All my sons are well and happy so I can’t ask for more. It’s about 8 weeks until my new granddaughter arrives and I think I’m more excited than his parents!! I suppose that’s logical as my nights will only be broken by trips to the smallest room! My grandson is somewhat ambivalent about having a sister but I’m sure he’ll be a great big brother

Keep as well as possible everyone and don’t forget to take time to smell the flowers

Best wishes, Jan

[Mostew]

You have the right kind of refusing to accept being not in the best of health., Jan

Often it can mean pretending and fighting it . You look on all the blessings of life .

Warmest wishes to you

Carolyn

[Mostew]

jeffrey conyers Jan 2018

I Am Blessed

We ALL are blessed if only we believe it.

Obviously, we can see it.

I am blessed.

Blessed to be loved and adored by my family.

Blessed to see my children further themselves upon this earth.

And even with those, I have lost.

I am blessed to have known them.

I am blessed.

Blessed to enjoy life.

Giving another chance to get any of my wrongs exactly right.

We All blessed to share and to care with a forgiving heart.

[hunter5582]

Sorry to hear you are having a rough go with the med. Unfortunately, the treatments can be difficult at times. It sounds like you have a very healthy perspective on the situations. hopefully, your body will adjust to the treatment regimen soon.

Regarding dealing with your partner's dementia, suggest giving yourself a break. It is very frustrating at times to manage a loved one with dementia. I have been a caregiver for both of my parents who have different form of dementia. My mother was particularly difficult to manage. No matter how much you love someone with dementia, it is essential to take a break from dealing with it. Otherwise the frustration builds to a point that it cannot be managed. The instructions we get on an airplane is to first put your own oxygen mask on before helping someone else. That principle applies to caring for someone with dementia as well.

Wishing you all the best.

[beetle in reply to hunter5582]

Thank you Hunter. That is a very good analogy about the oxygen masks. I keep thinking of you wishing that the Lord didn’t have so much faith in you to cope. I sometimes feel that quite acutely! People keep remarking that I have a lot on my plate. I’m just hoping it’s one of the enamel ones that we used to take camping or if it’s cardboard that it will bend back into shape!!! The mind goes in all sorts of silly places when you are in a single room in hospital! 😂😂

Keep well my friend

Jan

[JackandRose]

Hi Jan - so sorry to hear that you are having all these problems. I have just completed my twelfth round of Azacitidine. My heamaglobin is up to 15 - downside is my WBC is up to 38. We are now trying to get away every 4th week - we had a great week in the Trossachs and tomorrow we go to Italy. I have a BMB two days after I return but my blasts seen to be hovering around 1. So far so good. However I know compared to a year ago my breathlessness and fatigue have increased - the BMB will show the true state of play.

How does the song go “Ahahahah Stayin alive, stayin alive”

Your poor body has been battered over the past few months - I hope you get some respite.

Rosemary

[beetle in reply to JackandRose]

Thank you and have a wonderful holiday. I am a bit envious in theory I have to say but I don’t think my level of fatigue right now is compatible with a trip abroad

I hope your BMB when you get back (don’t think about that when you are away!) gives some reassuring results. My blasts are still in the mid teens! Hope remains eternal!

Best wishes, Jan

[lizzziep]

Just wishing you well 🙏🏻🙏🏻🙏🏻❤️

[mhos61]

Thoughts are with you Jan as you face this ongoing battle.🥰

[Otterfield]

I pray with you for the upturn you hope for. You are having such a tough time but the medical team have not given up. There is hope.

You are wise to look at the positives - healthy, happy sons and a new granddaughter to look forward to. Is there some respite care available for your husband I wonder?

We are all routing for you - we are one big family here, Jennie xx

[Bullace]

Jan you are an inspiration. You stay positive in spite of some really awful stuff you've been through. I do wish you well and hope they've been able to let you go home. All good wishes to you. Hilary