Not a good day. leukaemia diagnosis.

[biscuitsandbandages]

When I woke up this morning I was a mum of 3 with an 8 week old baby.

Now im a cancer patient on thr coronary care ward.

This cannot be happening to me.

Biscuits it must be terrifying and bloody frustrating but you were caught nice and early by the sounds and are having all the treatment you need from a good team of Drs who know what they are doing (apart from the dopey junior but you already know to check up on him!)

Just a thought, your thread is passed 900 now and it won't be long until you need a new thread. Would thinking of a title for the second thread help? We need to know where to find you so we can either hold your hand or celebrate right along side you depending on the day you are having.

Hope you can get some sleep

Good Morning biscuits. I understand your anxiety, but can't help feeling that the odds are stacked very much in your favour. If you can, I think it's a good idea to keep up that wonderful optimism you are so capable of. Try not to let dark thoughts get in the way.

Cheering for the neutrophils here, like so many others. There's a huge team of Mumsnet neutrophil cheerleaders, pom-poms a go-go!

Getting home would be so good for your mind & spirit: a designated pitstop for you to refuel and prepare yourself for the next few laps.

Thank you for replying. I couldnt answer last night as my brain was busy beating me up but reading someone was there helped.

Eek that's a lot of messages. Ive been thinking overnight and I think I will call the new thread "Needles and Neutrophils: The Hobnob Chronicles."

[Wink]

"Needles and Neutrophils: The Hobnob Chronicles."

I like it

In my head now a neutrophil is a crocheted smiley thing . Makes my attempts to positively visualise on your behalf easier anyhow

Morning Biscuits!

Great thread title, we'll give you a stern reminder to start the new thread, to avoid that car crash of one of us setting it up on your behalf and then the rest of us shrieking about not having your threads highlighted.

I wonder how the pain of the BM compares to childbirth. You've already done that x3, with G&A you say? Reckon you already know about things that are fucking agony smart a bit!

Biscuits, you are doing well. It is inevitable your brain is running through all possible outcomes and I can completely understand the 'not daring to hope' feelings.

Love the title for the new thread!!

Stay stale xx

I love the vision of the Mumsnet neutrophil cheerleaders! With hobnobs provided for post cheerleading duties!

I'm a total needle phobic so totally understand the fear of the procedures, but keep visualising three little faces as they see you walk through your front door and perhaps that should help get you through it....

Stay stale!
X

It's funny you should say that..... The smiley thing is a neutrophil....

I'm going to so end up outing myself but cancer is liberating and i Have nothing to be ashamed of if I do. This is real. So.......

sciencephotolibrary.tumblr.com/post/26488637732/blood-cells-coloured-scanning-electron-micrograph
We are crotcheting neutrophils with smiley faces for a fundraising event for a leukaemia charity and to raise awareness of the new methods used to donate stem cells.

It used to be that to donate bone marrow you had a general anaesthetic a painful and risky bone marrow biopsy and about a week off work,

Now you have an injection for 3 days to increase how many blood cells you make then give blood then go home. That's it. Practically no risk at all for the donor other than maybe feeling a bit fluey for a day or so. It's genius and life saving but despite being a HCP even I didn't know the technique has changed.

www.deletebloodcancer.org.uk/

How does the pain of a BM compare to childbirth?

I suspect like all things it varies from individuals to individual but for me the bone marrow is the most painful and distressing experience of my life. It far eclipses the pain of my labours. Worse i think because of psychological factors.

With the bone marrow I could withdraw consent and they would stop..... So I did on one occasion as couldn't take the pain. With a birth I could withdraw consent all I wanted the baby had its own agenda. With the bone marrow all I had was pain and fear. With the births I trusted my body and provided no one but my husband came near me I handled it ok as I knew the end result would be worth it..... It was a meaningful pain. I am trying to train my brain with visualisation to see the bone marrow in the same way as I will be having a lot of them in my future for many years if this works...... But I suspect they will need massive doses of midazolam to get me through the door.

Oh lord, that sounds tough. Didn't mean to trivialise.

Forgive me for not getting it, but this is a process to extract bone marrow to test how your chemo has worked, isn't it? With the hope of having a transplant when a donor is found?

I will vouch for biscuits the pain of a bone marrow biopsy is not comparable to childbirth, it is excruciating and had me curled up going white & faint. They screw something akin to a corkscrew into your bone. With sedation I felt nothing and would opt for this every time. Your fear of BMB is just as I fear my PET scan, or as commonly known scanxiety!! We all suffer with it, desperate to know the results but fearful incase it's not what we want to hear. I'm sorry I don't know what options there are with leukaemia but I would think there will be other chemo regimes they use if the present one not doing the trick?? My early days of treatment I stayed positive knowing there was more they could try and do, could this be the same for you? although I'm keeping everything crossed that you'll have great news. also don't worry about your time without chemo, the chemo kind of whacks the cells into submission so even if still there they are kind of sleeping, it would always take some time to feel them active again after a chemo regime (I know different blood cancer) Also take this time as time for you and your body to have a break and be normal again, you need this to be able to get through treatment, if they kept hammering away at you you'd risk infection and lack the strength you need. Hopefully your neutrophils are bouncing back as I type, mine used to jump back up

The smiley thing is a neutrophil....

Oh good, maybe I am mildly psychic as opposed to bonkers after all

But I suspect they will need massive doses of midazolam to get me through the door.

Do they prefer not to? I really hope being an HCP yourself doesn't make it hard for you to be a stroppy and demanding patient when necessary

Is there any way you can get them to confirm in advance that you would be able to be sedated? Might that take some of the fear away?

Just had the doctors round and they have agreed to sedation :-) and they are going to do it in my room where I feel safe.... And a provisional agreement that my husband can be with me. They don't usually let family stay but he is HCP too and they have already seen that he is unobtrusive and keeps me calm so is a benefit to them to have him in the room.

Still waiting for those neutrophils back.

I love the concept of scanxiety!

That's great, hopefully you'll now feel a bit calmer about what's to come. Excellent if they let Mr Biscuits in too.

So pleased they have agreed to sedation.

Also cheering on those neutrophils.

Give me an 'N', give me an 'E', give me a 'U'......etc!

Great news about sedation!

Just had an echo. I have the same vague 'bra too tight' feeling I had before this all started. I'm worried the chemo isn't working, my lymph nodes are still full and the fluid round the heart is building up... Initial results are there is fluid there..... Go me and listening to my body and asking for a repeat scan...... But they have to go away and compare with the old scans to make a judgement on if its an issue or just the remains of the fluid they couldn't quite get off last time.

Worried.

Haven't read for a few days and just popped in to say hi. But I see you have had an echo. I truly hope this is just old stuff still sitting there. I shall be thinking of you until the results. Good luck. And go team neutrophil.

Dear Biscuits,
I haven't posted before although I have watched your thread with awe and admiration from the start. Although I am aHCPI don't know enough about your particular condition to offer meaningful reassurance so I'll just wait with you if that's ok while the Dr's check the old scans. xx

Biscuits my phone malfunctioned and lost my threads....so glad have found you ....huge hugs x

Thank you for the hand holding. They have promised an answer before the end of the working day in case they do need to drain again before the weekend.

And joy of joys I have to pack up my room and take things off the wall for the weekend as they are doing an annual deep clean and we all get moved around!

Dear Biscuits,
While a bit of a pita maybe having something to do while you are waiting will help? You could also imagine what it will be like when you pack up to go home to DH and DC's. Take care xx

Am hoping you get the news you want to hear by end of the day, re. the fluid, biscuits. The waiting must be so frustrating for you. Although things seem to be moving very fast in some respects, everything can feel like an eternity in hospital.

Bit of a nuisance having to move all your things but maybe a change of scenery will be vaguely therapeutic?

Thinking of you, as ever.

Am here holding you hand still and thinking of you. Fingers crossed for good news.
I remember the waiting was always wales us the worst part, I was always left thinking how can i fight if i don't know what needs to be done? Great they listened to you though.
Can you knit/do the crossword, anything to distract you for a hour or so. A re your family coming in later?
X