Bad news but don't worry too much (Part 28)

| 31 Comments

I have just found out that the chronic myeloid leukaemia could be back.

I couldn't believe it when my doctor revealed the results of my second bone marrow sample. I was just so confident it would still be a total remission.

However, I am not too worried about it.

As a journalist you are trained to put the most interesting facts at the top of the story. The purpose of this is to grab the reader's attention and make them want to read on.

I hope that's been achieved.

Now, before I explain why it's important not to be too concerned at this stage, please permit me a little bit of whinging.

The news from the hospital the other day was hugely disappointing. I came home without saying much and just cracked open a couple of beers.

Sometimes I'm not sure who to turn to. What should I say and how do I expect this person to reply? It's clearly not all going to be all right.

At the time I couldn't really explain how I was feeling but now after reflecting and putting together this entry I think I understand.

Strangely enough this blog is evolving into my own coping strategy - something I never intended it to be in the beginning.

My response to the news had been one of bitter acceptance but I was really apprehensive about telling my family. I am tired of upsetting people I love and it's quite draining going through the same complicated haematology several times over.

Also a dark cloud that for a time had seemed distant was once more in the foreground and looming ominously.

The crux of the matter is that, like Hitler in the latter stages of World War Two, I am just fighting on too many fronts;


•Chronic Graft versus Host Disease - which I know is going to flare up again. My hands and feet feel like they're burning some days and my skin is a little itchier. Steroids are down to 20mg a day.

• Constant infection risk.

• Because of the radiotherapy and the cGvHD my eyes are getting drier. I know they will probably require operating on to treat cataracts later this year.

• Coping with my big face and boggly eyes.

• Infertility and IVF.

• Thinking about the long-term future.

• Organising a wedding (which is quite fun actually).

• And now the prospect of leukaemia again.


It's like I'm walking through a minefield - which ever way I turn I encounter difficulties. I don't think I'm scared I just feel angry at this increasingly impossible situation I have ended up in.

Now for the good news.

My bone marrow is essentially very healthy. It's making all the cells it's supposed to and in all the correct numbers.

The other tests carried out on my bone marrow came back clear with the exception of one.

This molecular test is really sensitive and it only gives a yes or no answer. It showed that there is a protein present in my marrow associated with CML.

My consultant, who was really good and had obviously spent time making sure he gave me the facts without causing me to be too alarmed, explained that the results of this test are hard to interpret.

Firstly, it is really sensitive and the result could have come from background noise or interference.

Secondly, if the cancer is making a comeback my situation means I have a very good chance of fighting it off:


1. I have started taking the 'miracle drug' Glivec again. In recent years it has transformed the treatment of patients with CML. For many it represents a cure or at least holds the leukaemia at bay for many years.

2. As my cGvHD almost inevitably revs up again that will also play a role in attacking any cancerous cells. With a bit of luck my new immune system will recognise any cells associated with CML as being foreign, kill them, without bothering the rest of my body too much.

What reassured me most was when my consultant said that on an anxiety scale- with 0 being nothing to worry about and 10 being soil your pants- he rated this situation somewhere around 1.5.

If you get your head round the science I'm sure he's correct.

He also said because of the Glivec and cGvHD there is every chance the results could be all clear following my next bone marrow test in April.

I was a bit down after hearing the news but I'm OK again now. Nothing has changed plus I'm still alive and relatively well.

Apologies for such a downbeat entry because I had planned to do something much more entertaining.

I promise next week's will be more fun - although as this week shows you never know what's around the corner.

31 Comments

Adrian, sorry to hear about the possibility that CML has returned. Glivec is a wonder drug and has worked for many people who have had years on it... You have been through such a lot, you deserve some good luck now. You will get it... Arrange your wedding to Poppy, carry on as normal, you know that we are all behind you 100%. Becky had her results back Tuesday, she has gone from 100% Philidelphia to 0.7% in 7 months. Her white blood cell counts when she was diagnosed were 380 one day and 521 the next. Glivec is wonderful and it will work for you, think positive!!! Thinking of you, Lots of love Dawn xxx PS don`t forget to post the photos of the wedding when it happens, we will all want to see Poppy looking stunning and you looking Dapper!!!! xxxxxx

Something to make you smile.

Me doing the race for life dressed as a fairy with a tutu and wings, or even worse someone suggested me dressed as WONDER WOMAN!!!!

More like Blunder Woman!!!

Suggestions please on a postcard!!!!

Dawn xxxx

Hi Adrian

Bad luck.

Sounds though you`ve got your head round it now-if you never need anyone to talk to,you know where I am.

The rotten cGVHD will come into play now and you`ve got Glivec which sounds amazing for CML treatment.
We were involved with AML which as it`s name suggests is far more acute & difficult to handle.
So, hang on in there.

Crewe are at Carlisle tomorrow & will get thrashed I feel! Where are Forest?
What do you think of Keegan at Newcastle - I bet Owen is thrilled!!
See, you`ve always got the footie to take your mind off things - never a dull moment.

Take care & love to all the family.

Best Wishes

Liz

Ah Adrian
1.5 on the richter scale of anxiety still makes a fair enough rumble in everyday life... I am sorry to hear about this development.
No need to apologize re the 'mood' of you post - life happens and its good to read it as it is - even though its terribly dissappointing.
Thanks for sharing, Adrian, and we are hoping for great results from the April bone marrow.
love and light to both you and Poppy
Annie
http://livingwithcml.blogspot.com

Ayups Sudders...Catch ere!

Let's hope you've given that bloody hat a wash, ready for your next round!

This can only be a minor setback for a major person! All the Catch family are holding you,Poppy, your family, your thousands of friends (and Andy Jacko)! In our thoughts.

After all you will soon have a mother-in-law to be answerable to, so get that marrow fit for April.

By the way, Gordon the butcher reckons a pie or two should be part of the treatment!

Love and constant thoughts from us all.

Catch

Just remember - you're still the strongest woman in the world!!1

Aw, Adrian, what a complicated flippin' situation. Your head must be in a whirl. Prayers and good wishes coming your way.

Know what you mean about being fed up of giving family/friends news which upsets them.

Thought of you when I started chemo again on Jan 9 - me and another patient were trying out her collection of hats - fantastic!

Chin up.

Jill x

Oh mate, this latest news must be a bit of a blow. 1.5 is pretty low down the scale though, so that's got to be something. I like your style with handling the news though - beer, the answer to everything!!

I hope the wedding planning is going well. That's a great way of keeping your mind off things. Are you amazed at how much there is to organise?!

Take care

Julie x

Keep going mate. Your sense of perspective and bottle is humbling.

Hello ive been following this blog for a while,its my first comment on it. I cant describe how inspiring your attitude is, thank you for sharing your journey adrian.
- Always wishing the best !

Regards neil

Hello there our two amazing people... all of us family, friends, acquaintances and bloggers must be holding hands together wherever we maybe to give you strength because you are such an inspiration to all....lots of love Uncle Brian & Aunty Lucy.
( Brian starts 6 sessions of chemo shortly but WILL be fully fit for the special day )

I'm so glad the Glivec is helping. My hubby was using that, then Sprycel and now Tasigna. Just to let you know, there are more treatments out there. "brothers/sisters of the drug" Hang in there and Look forward to hearing about the wedding.

Adrian,

Here's wishing you well from across the pond. You have certainly managed to deal with the disease with dignity and respect. I was not in your shoes as the patient, but the shoes of a caregiver to my wife (that is when we were engaged, now we are married). She relasped and had no chance of life unless we found a (genetic) South Asian donor.

Luckily we did (infact she is from the UK), and her transplant went off well. We are ever so greatful to her donor and new found sister (who after three years we still have not met), for kind generousity and strenght in donating a part of herself to a stranger.

Why am I telling you all this and what does it mean to you? To let you know that courage an strenght from within is very important. You have to believe you will get through this, for you, for your wife to be, for your family and for the world.

Always remember, "what does not break you, will always make you"

We will pray for you, and will be cheering you on from this side of the pond.

Keep fighting.... "Live Strong"

Tim & Pia

Hi, it's been just over a month since I checked on you - sorry - but yet again you keep on the happy up-beat!! - I'm so sorry to hear that you have had this last news. You are such a strong person - think you should be Saint Baldy by now!!

Good luck with the wedding plans! - !

You still make me smile through the troubles you encounter! You still keep coming across with such a cheery way! You are brill!! God Blesss you - am thinking of you.

my hugs for you!

{x}

JANE

alright mate just seen the news and herd the news sorry to hear it may have returned anyway chin up keep smiling and congrats on your marrage take care

Hi Adrian

Saw you on Look North last night. You are a legend. Bad news but keep strong, everyone is rooting for you. Good luck with the wedding plans and we look forward to seeing you pretty soon.

Super H

Hi Adrian
I saw you on TV last night sorry to hear about your up coming surgery "to remove that bloody hat" You had it on when we met at Rotherham months and months ago!
I know what you must be going through, you think everything is moving in the right direction then along comes some more bad news. I've had nearly twelve years of it now it's just how life is "up and downs"
At least you managed to get you and your hat on the telly! Your on the right treatment now anyway few beers always helps, enjoy yourself and stay positive!
Carl

Hi Adrian,
Just a quick note to say I hope you are doing well. Thinking of you and hoping you're ok. I have my next bone marrow biopsy in 2 weeks and I'm hoping all will be ok. I am on glivec 400mg too and my pcr results in Nov were 0.10%

Take care and sending lots of positive thoughts your way.

Cheers,
Stef (in Australia)

sorry to hear your latest news adrian, im sure you will eventually win this battle, so keep going mate. to read of your constant ups and downs and the way you keep going is an inspiration to us all , i have spent the last week moaning and now feel very stupid and embaresed for doing so. anyway good luck and keep fighting adrian, cheers mate
mark

Do the steroids make other areas of your anatomy swell up?!
Surely that should cheer you up?!

Seriously though, sorry to hear your bad news but as you've said there's loads of positives and you know within yourself how healthy etc you feel. Keep your mind occupied with those wedding plans, which flowers to choose will be a toughy, as will the lamb versus beef versus chicken connundrem


xxxx

I was really pleased to see you in the jockey the other night.Your dad told me about you and suggested I log on and shock horror Ive managed to which is a minor miracle in itself. Keep on fighting!!!! Im sure you learnt to do that at Freddies if nothing else. Best wishes Jane

I'm at the moment having chemo and at this moment in time going round the bend. I wish I half of your positive additude it's very hard.All the best for the future we certainly need it. Your a tough cookie.x

You continue to amaze me with your strength and humour (love the rating of 0-10, nothing to worry about to soil your pants....).
Kate xx

Hi Adrian,I saw 'Calendar' last night and I just wanted to say how sad it was to hear of your latest setback. I lost both parents from cancer related illnesses,both relatively young and I now how devastating it can be.

But you amazed me with your positivity,will to live and determination to enjoy the rest of your life,however long. I have no doubt that you will! Surround yourself with Support,from family and friends and be assured that so many people,like myself,are thinking of you and wishing you well. Take care and god bless. Joanne and family. x

Since the days of the Old Testament, God has always wanted His people free from sickness and disease—cancer, arthritis, AIDS, heart trouble, even the common cold. And nothing more clearly reflects God's will for our well-being than the earthly ministry of Jesus, who spent much of His time healing the sick.

That's nice, you may be thinking, but that was 2,000 years ago. How do I get the “will of God� to manifest in my body today?

Well, first consider this: Believing that God can heal your body should be no different for you than believing He can forgive your sin. And yet, that truth becomes even more powerful when you realize that, not only can He forgive you and heal you—He already has!

God's provision for the healing of your body and the forgiving of your sin are just two of the many benefits you received when you accepted Jesus as your Lord and Savior. Your forgiveness and your healing were secured for you.


PLEASE SAY THE FOLLOWING PRAYER AUDIBLY:

Father, the Word of God that I have heard and confessed is the power of God unto my salvation. I confess Jesus Christ as Lord over my life — spirit, soul and body. I receive the power of God to make me whole, sound, delivered, saved and healed now. I act on the Word of God and receive His power.

Sickness, disease and pain, I resist you in the Name of Jesus. You are not the will of God for me. I enforce the Word of God on you. I will not tolerate you in my life. Leave my presence! I will never allow you back.

I have been healed and made sound. Jesus made me whole. My days of sickness and disease are over.

I am the saved. I am the healed. The power of sickness over my life has been forever broken. Jesus bore my sickness. Jesus bore my weakness. Jesus bore my pain — and I am free.

No sickness, sin, fear or evil addiction shall lord it over me any longer.

I have been redeemed from the curse and I receive the blessing. I proclaim my freedom in Jesus' Name. The gospel is the power of God to me unto salvation. I receive it. I act on it. I am made whole in the Name of the Lord Jesus Christ. Amen!

Hi

Saw your interview on the news this morning. My 11 year old daughter has AML Acute Myeloid Leukaemia. We never expected this ever. We understand the impact of it. Fortunately for us she's just finised her 4th course of Chemo and was in remission after the first course. Watching my daughter go through this has made me and my family realise "don't put off tomorrow what you can do today". I've read your blog and will be looking into the bone marrow donation. You are very brave and people need educating.

Mary-Ann xx

Adrian

You have no idea what an impact you have made to so many people. Showing the "highs" and the extreme "lows" of this disease and the effect it has on lives has probably made many people realise how ignorant they are about Leukaemia, and how it strikes without warning... (my dad had Acute Myloid Leukaemia)

i am now going to place myself on the list of bone marrow donors...not sure whether they will want me (had a pacemaker fitted at aged 39)...so hey i may end up a reject...ha ha

we are all thinking about you Adrian

debs
xx

dear Adrain,

Saw you on breakfast telly and I would really like to help in your fantastic quest to educate young people about being on the bone marrow register.I was able to donate bone marrow 23 years ago for Katherine in Cardiff who is now doing very well and a grandmother several times over!! so I would love to help in anyway possible..
You are such an inspiration to so many,
with much love
Sara Davies X

keep going. love to have a beer with you

Adrian

We spoke on Radio 5Live this morning. On behalf of my family and all the other parents whos children require a transplant - thank you.

Facts are my daughter and other smaller children will need to receive an organ from the target age group and size range.

Keep it going and keep in touch.

David

Adrian, never has a comment been so poignant.
QUOTE
I promise next week's will be more fun - although as this week shows you never know what's around the corner.
QUOTE
I often take time to read back old entries of the blog, some make me smile, some make me a little teary, but this one blew me away. As we lost our dear friend Ingrid to cancer this week, "you never know what's around the corner" is oh so true.

Adrian, we all miss you so very much, but are so grateful to have had you in our lives and hearts. You will remain there forever. Lots of love. XXXXXX

About this Entry

This page contains a single entry by Adrian Sudbury published on January 18, 2008 5:21 PM.

A tribute to Donna was the previous entry in this blog.

I can only apologise: A "unique" thanks to everyone who has recently commented is the next entry in this blog.

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