Brett G
Posted by

If at first you don’t succeed…

Brett G
Posted by
18 Jul 2015

Following remission and getting away with 3 cycles of chemo last year I thought I was done with the nasty AML. However, this has turned out not to be the case, and so we carry on...!

Been here before!

Following remission and getting away with 3 cycles of chemo last year I thought I was done with the nasty AML. However, I had been having UTI's earlier in the year, and tracking my WBC and neutrophil counts, which showed a continuous decline; I had a feeling that things were not right. I discussed this with my consultant, who listened and brought my checkups to 3 weeks instead of 8 weeks, these led to a bone marrow aspirate on 7 July, which confirmed that I had around 20% 'bad' cells back in my bone marrow.

Reaction and starting again....

I and my wife took the news well, I had largely expected it, to the extent of spending extra time with the kids and sorting out jobs around the house before diagnosis. The doctors and nurses were clearly all moved as we all thought that this one had been nailed. A plan was quickly put together, with treatment starting on 9 July. This gave me just enough time to go to my son's primary school Leaver's Assembly, at which he got a prize, which really lifted us.

Getting lines put in again and starting FLAG chemo were I found very distressing, after how much we had put into treatment before, but plenty of support was available. Our children (now aged 11, 10, and 6) took it well, and we continue to talk with them so they can have any questions answered when they need, openly. Family, friends, some not seen for 20 years, have been wonderful with some lovely offers of future holidays to look forward to, thanks guys. Chaplaincy helped in bringing in someone of the same faith as us to talk to, and were really lovely.

As of Wednesday I finished cycle1 of chemo, this was welcome as the chemo was even stronger than before with some bad D&V, however I still have my hair this week...

What next?

We are all hoping for remission from cycle 1, we will know in about 3-4 weeks.In the meantime I am enjoying the pleasures of my hospital room again, getting lots of visits, whilst being careful on infection, so much better than having Bargain Hunt on repeat!

If I get remission then we are looking at further chemo followed by a stem cell transplant as my immune system is obviously not up to the job of wiping out any remaining AML. All that is a while off and we will focus just on stage 1 for now.

I do take heart from all the positive stories by people who have gone through a relapse and bounced back.It is a daunting road but not one on which we will be the first or last; we have no choice but to move forwards and in doing so I hope will give it our best!

With thanks to my wonderful wife, Bushra x

 

Comments

20.07.2015

Brett I'm so sorry to hear about your recent relapse which though something that you were aware was a risk must still have been a shock to you. 

I'm glad that the stories of others have provided you with some encouragement. As you say it's a daunting road ahead but it sounds like you've got a great support network ahead and are approaching it with the same determination and sense of humour as you did first time round.

We're here to help in any way that we can and have everything crossed that the chemo is a success. I don't envy you with the hospital room and Bargain Hunt repeats - I think it was Cash in the Attic when I was in having my transplant.

Keep talking with your consultant and keep us updated on how you're getting on. You're a minor celebrity here in the office as your blogs are always so good and we feel like we know you even though we've never actually met you.

Anonymous
20.07.2015

You can beat it Brett! Prayers coming to you from around the world! Stay strong, rely on faith and loved ones.

Warmest Regards,
Kara
daughter of mom that beat lymphoma!

Anonymous
20.07.2015

Such a courageous individual, keep positive and stay strong. You'll beat it again and everyone is here thinking of you.

Anonymous
20.07.2015

Wishing you the best! I have been through 3 diagnoses over 27 years, it's hard and frustrating to know you have to fight again, but it's something you can do! All of us at www.whatnext.com wish you the best!

Anonymous
20.07.2015

Brett I'm so sorry to hear that you've relapsed. In 2009 my husband who was 46 at the time, was diagnosed with AML & had 5 rounds of chemo. He got straight into remission after the 1st round. He was in remission until July 2012 but like you he had a relapse. Salvage chemo commenced & luckily after first round he was straight back into remission. In December 2012 he had a bone marrow transplant from an unrelated donor. We can never thank the donor enough for saving my husband's life. Take one day at a time & never give up hope

Anonymous
20.07.2015

My thoughts and prayers are with you This is the first time I have done this so hope my words are appropriate. I am starting a special Novena tomorrow to St Martha and will include you in the prayers x

Anonymous
20.07.2015

hi
My partner has just been diagnosed with AML and we are still in shock, what
has also shocked us is the support of every person who do or don't
know on facebook and in every other walk of life. lf we could all survive on love alone,
we would have beaten cancer by now, unfortunately we won't.
l wish you all the best and hope we talk again in years to come,

20.07.2015

Thanks Andy, good to know we have you all (as always) fighting for us! Best wishes, Brett

Anonymous
20.07.2015

Always will be next to you, supporting you and Inshallah will get through this. Love you lots and lots my lovely husband. xx

Anonymous
20.07.2015

Wishing you the best in your fight against AML.

Anonymous
20.07.2015

Brett, I wish you well on your journey. My son, Rory, now 11 was diagnosed with AML aged 4. He was lucky to remain cancer free after the initial 5 courses of chemo. If you could see him belt the ball around a tennis court today it would make you smile.
Be positive, have faith, celebrate what you have.
If I could find the button to insert a photo I'd show you the ginger dynamo that is Rory. X

Anonymous
20.07.2015

This blog is such a wonderful idea! It's just a great space for sharing thoughts and motivation. Well done for being so strong and being a great inspiration to others.

Anonymous
20.07.2015

I don't know you Bret.
But I know people who have suffered like you have done.
I'm not going to go on about things.
All I will do is send good wishes to you every night at 21:00 until you've won the battle.
Bless You

Anonymous
21.07.2015

Dear Brett and Bushra,
Yours is a story we are hearing more often than we would prefer. It's a risk that all who receive treatment are made aware of, but seldom do we think it could be us. You have been so unlucky to have to start again but the strength you and Bushra show is so inspiring. We are praying for you, as one more of our friends joins you tomorrow, in the hope our prayers are answered for a speedy remission and resolution.
Take care both of you, and your children.
Siobhan and Jason xxx

Anonymous
21.07.2015

Hey Brett - as an APML survivor, my heart is with you and your family. But you take that bull by the horns buddy and throw it to the ground! You know already that a positive approach and knowing what is important are all key elements to beating this thing. Try not to put your energy into getting angry - which is hard I know. But it seems to me that you have the right approach. I wish you all the best, with a positive future for you and your family.

Anonymous
21.07.2015

Go for it, Brett. Surround yourself with positive people.

Anonymous
21.07.2015

Hi Brett, just like to say my cousin and her friend have just done a head shave with regards to Lymphoma, she really suits the shaved head,my partners cousin has just had the all clear, her chemo sessions worked , I am sending prayers and thoughts your way and wishing you good health for the future ,
Stay strong Best Wishes Norma x

Anonymous
21.07.2015

Hi there, I love your positive attitude, and that is definitely a huge part of it, you can do it! Sending you and your family positive thoughts (my dad is 14 years in remission from aggressive CML!!!, beating some steep odds!) all the best xxx

Anonymous
21.07.2015

Hi Brett, my wife has been in touch via Facebook earlier- I have recently relapsed with AML having been clear for 3 years, finished my 1st dose of chemo 4 weeks ago and am now at home having spent 5 weeks in hospital recuperating. Have bone marrow biopsy tomorrow and then the wait to see if I have gone back into remission. Where do we go from here, who knows right now. Like me, you have a wonderful wife and family, who I could not have got through the last 3.5 years without. I would surely have died without everything my wife has done, she has been brilliant.

Keep strong Brett through the rough times ahead, I will follow your blog with interest.

Very best wishes to you and your family,

Martin

Anonymous
21.07.2015

It is a daunting road my husband is in remission from bladder cancer only came through it because of my care of him in my own house I hope you beat it Brett

Anonymous
21.07.2015

Hi brett ive been there with aml so far just lucky stay positive and wish you the best its a life changing experience and make you appreciate each day stay strong charlie

22.07.2015

Thanks Martin, it sounds like you are in a very similar position to me, this is where these blogs are so great in enabling connection, it can at times be pretty isolated otherwise. Our partners have it hard and in many ways have a tougher challenge than us, I try to appreciate every minute we have with my wife, I could not do what she does.

Best of luck with the biopsy, even if it is not great news there are other things they can do, thinking of you both!

Best wishes, Brett

Anonymous
23.07.2015

Thanks Siobhan and Jason.
Bushra xx

Anonymous
24.07.2015

Hi Brett I'm a good friend of your Dad's. I was SO sorry to hear of your recent news.
What I'd like to offer.... is that it's important to pay attention to your whole 'way' of being because its the environment that the cancer cells are living in that is important. By this I mean, if you 'feel' kindness toward yourself (your body, emotions and mental 'inner' world, this will benefit your whole being). Try to keep yourself as 'clean' as possible - by this I mean eat only organic nourishing food, stay clear of any chemicals in household products or creams etc. Each and every moment IS your life, appreciate and experience the little things such as a smile from a stranger, a butterfly, the sunshine, the rain. Being right here right now is all there is ..... anchoring the future in the present and anchoring the past in the present.

Anonymous
08.08.2015

Hi Brett,

I'm so sorry to hear of your relapse. I check the blogs every week to see how you're doing, and this must be really hard for you and your family. Stay strong mate, and fight this with every ounce of your being. I will be thinking of you.

Best wishes
Emily

11.08.2015

Thanks Emily. I have finished cycle 1 of chemo, it took a while for my counts to come back but they shot up fast once they did and I did a jailbreak from hospital on Wednesday. Biopsy today, never fun but fingers crossed for some sort of remission so we can go to the next step!

Hope you and your girls are doing well and getting support, it is a long recovery but am sure you can do it.

All the best, Brett