AML 11 MONTHS ON

Hi Rob , some very great support from Jane and Nick.

I was just the same as your wife during all my treatment......”let’s get on with this and if the first plan does not work we move onto the next and the next.......”

I have asked my long suffering wife on a number of occasions about being the person sitting next to the bed and I am always staggered as to her matter of fact responses to my questions. In simple terms her resolve is remarkable. 

She does all the admin and financial stuff for our local Community Church....... they were great and let her please herself when she needed time off........ but she insisted on keeping the important areas going as basically she was the only person that could do the financial stuff......... I would wake up in hospital and she would be sitting on her laptop catching up on things. 

Our two girls are now mums so we don’t have children 24/7 but we do have four granddaughters under 7......... so keeping them happy was a challenge.

I was diagnosed back in 1999 with my CTCL, it’s a long story that is in my profile but the first 14 years had more practical medical challenges due to how the condition presented - simple to say at times we were changing the bed sheets every day.

Then from mid 2013 it all started and continued throughout 2014, 2015 and most of 2016 followed by numerous winter infections so lots of blue lights and NHS DB&B.

Her stock answer will be “I could not control any of the medical stuff - that was up to our medical teams. But what I could do was control the battle between my ears. Controlling this battle helped me get through the long years, helped me cope and support Mike and the family as best as I could”

You mention Stem Cell Transplant - you will see that I have had two Allo SCTs with cells from my brother.

Lets look for this not to be the case as SCT brings new challenges, for us it was being away from home for 4 weeks then 7 weeks the following year, being in isolation for weeks at a time....... but as this part was a life and death roll of the dice we were clear that we would continue to laugh, love and make memories regardless of what was thrown at us.

Should you end up on the SCT Magical Mystery Tour - we have a very supportive Stem Cell Transplant group where you would get a lot of help in.

I would highly recommend that you use what support systems that are available......the same support systems that you may well tell others to use. My wife found them a great help to pidgin hole some of the emotions and keep life on a level keel as much as possible. So do check for any Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing.

Easy to say this - but keep your eye on the end game in all this, you have come a ling way already and then end goal is closer than not was way at the start.

I have a few very good friends who are Consultants, one being my Respiratory Specialist and we often sit and talk about how medical professionals find being on the other side of the desk to be so hard....... and even more so when it comes to the very cohesion world of Heamatology.

You are doing great.

Good afternoon Rob.

I am so sorry your wife and yourself are going through this journey. 

I was diagnosed suddenly with AML in April 2018 at the age of 60.

Despite a rocky start I had three rounds of chemo throughout that long hot summer . I was on the AML18 trial and at the beginning of October was told no more treatment and no transplant as there was no sign of disease.

Life got back to normal fairly quickly, I went back to work in November also for the NHS .and was back doing most things I enjoyed pre diagnosis including running up to 5 miles.

Unfortunately in Feb 2019 the results of my latest bone marrow biopsy showed the cancer was returning. I had more chemo straight away to keep me in remission followed by a bone marrow transplant in May.  

It has been a tough journey but my life is slowly getting back to normality again. 

My wife and two grown up sons have been great support throughout my ups and downs and going public on Facebook really helped as we have a large number of friends in the running community.

I found it difficult finding other people with AML to compare notes in the early days though this has changed the longer time has gone on.

This forum has also been a great help with some very positive stories and helpful information.

Hope your wife is soon recovering at home from her first round of chemo and everything goes well from now on x

Mark 

Thank you all for your reies. It absolutely helps hearing from others who have been throigh themselves either as patient or partner.

It's very clear i know this is a long haul, a marathon and I need to strap in tight. The uncertainty is definitely the most difficult. But it is what it is and I'm slowly getting my head round it. Looking forward o my wife coming home for a few weeks in the next day or 2.

Good morning Rob , on a practical note I see you have not yet joined the group. This helps as you can then select to recive email notifications when someone sends you a reply.

Let’s see her home soon as this lifts everyone’s spirits.

Thanks.. I've sorted! 

Hi Rob

Just jumping in here as our experiences sound similar - apart from that I like your wife was the patient, diagnosed in 2015 and been in remission since the sept of 2015.

Our daughter was 8 at the time and my husband felt very much like you.  

To be honest from the patient perspective I had zero expectations, I was just focused on getting through treatment one day at a time and just being at home was enough.  I was in as much of a whirl/blur as my husband.  I had been very ill so was pretty weak, unable to do much, my husband had to take me to the bathroom etc.  how has your wife been? My first cycle took 5 weeks too. You are doing great and reaching out like this definitely a good decision, I know my husband had people to talk to because I wasn't much help to him in this way at the time.  I went into this survival mode thing where I only wanted to hear positive things, focus on what I needed to do treatment wise and was trying so hard myself to stay strong that I couldn't take on his worries.  Looking back now I think it was my minds way of coping with this diagnosis and massive change, protecting my from breaking.  Does this make sense?

My husband didn't work throughout my treatment, he visited me everyday and stayed most of the day with me

Try to take one day at a time and have no expectations, when I was at home we didn't do anything, just watched TV, family visited but that was about it because I was too exhausted.  

Uncertainty is definitely something you have to get used to, taking one day at a time, this does change your life and that takes time to adjust to.  I don't think I started to do this until I finished treatment.  Plus it all happens so quickly you don't have time to get ready

There is so much to take in and deal with after a diagnosis like this so be kind to yourself.  Let me know if there is anything else I can help with

Anna

ANNA

Your post is spot on, exactly how I was when my wife was diagnosed in2018.

It is a,scary time and the not knowing what's ahead is the worst. Keeping strong and positive with each other and the belief that your clinical team will do everything humanly possible to help you through this time is vital. 

Rob

I hope your wife managed to get some quality time at home recently, maybe still home with you now!!!! If so enjoy the time and stay strong together. You will both get through this.

Nick

Thanks Nick

I agree, belief in your clinical team and I didn't doubt mine for a minute, is vital.  And knowing what I know now about it all they really do do everything possible... 

At this point for Rob you have little or no control which I get is hard, everything is in the hands of the clinical team so as you say trusting them is the key.

From what I've learnt they are experts and liaise with other teams all over the country when treating AML which I find reassuring because they really know all there is to know about it.

Regards

Anna

Something else Rob, do not forget to ask as many questions you or your wife have regarding her treatment no matter how trivial or difficult these may be. They may not have all the answers you are looking for but they will do whatever they can to advise and guide you through. It is extremely hard as Anna has said and theres no getting away from that and it's totally normal under the circumstances. Please continue to ask this forum for help and support at this time, personally speaking, I dont know how I would have coped without these guys helping both me and my wife. You also have my details if you want to contact me.

Nick

Thank you both Anna and Nick. 

Anna, you sound exactly like my wife. Marrow focus purely on doing what she needs to do. She hasn't read anything on Internet and entirely trusts the clincial team who have been fantastic. Absolutely a day at a time. One day she feels better, less sick and then next day q really quite sick but very exhausted which she doesn't always appreciate and keeps calling herself lazy!! She's the least lazy person ever haha.

She is at home at the moment. Doing ambulatory chemo. She's in remission from the induction. On first consolidation. She's doing well. We expect she will be admitted sometime next week when her neutrophils drop again. My focus is on the family, Ellissa and the 2 girls. I am looking to do a bit of work possibly in a month just popping in. Am negotiating that as for me I think it will help me too but am being very clear with work it has to be flexible and limited hours. And if its too much I would just stop again altogether. Its a difficult balance.

Thank you for your support and it's great hearing about the positive outcomes  x

Rob