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Needles and Neutrophils: The Hobnob Chronicles

999 replies

biscuitsandbandages · 11/05/2014 07:15

Four weeks today I woke in my own bed with my 8 week old daughter in my arms and waited for the inevitable sounds of approaching 4 and 6 year old boys. I had everything I had every dreamed of. Life was difficult and tiring but we were getting there and I had plans for the summer and dreams for our family's future together.

Twelve hours later I was on CCU plugged into a monitor with fluid around my heart secondary to a diagnosis of adult T cell acute lymphoblastic leukaemia. I've not been home since.

Statistically my chances aren't great but statistics don't apply to individuals and leukaemia hasn't met me before. My personal survival statistics calculated by me and based on stubbornness, amazing support from family, friends and my mumsnet backup crew and the healing powers of 3 small children are 100% and I won't accept less.

I have superpowers. I have grown three entire human beings. Piddly little leukaemic cells haven't got a hope.

But.....at times I am very scared. This should not be happening to me. It's was not how I planned to spend my maternity leave. My precious year when I was just going to be their mum and nothing else.

This is my second thread but I'm not going to link back as I'm moving forward. Thank you for moving forward with me.

Biscuits x

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deserttrek · 19/05/2014 21:30

Good evening Biscuits

Your leukaemia is the same as mine the one I had. We are on the same treatment protocol, as a result.

This is to give you hope information. I can only do that, nothing else. Inshallah.

I felt ill in the July. I got worse in August - we cancelled a holiday because I was so lethargic. By September I was vomiting every two hours. In October I had night sweats like sticky glue. In November, I couldn't drive to work because I blacked out. In December, I lost three stone in the 24 days before Christmas. On Christmas day I ate a carrot and one small piece of dry turkey, then brought it up. Before New Years Day, I felt strange shudders, with blackouts, and an intense calmness and knew my lifeforce was trying to leave my body. I also knew, just knew, I had leukaemia. But the 'markers' were not showing that result in my blood tests (like you I had masses of red cells). Second opinions from GPs did not help. It is not a perfect world, no one to blame, that's how it is. But in the first week of the January, a young just qualified very diligent doctor noticed something in the lab and said "call him in, I think he has leukaemia". I went in. Due to a very important event (for me), I had 48 hours of treatment and a negotiated discharge for 10 days. Stupid, I know (*).....because I contracted out of my protocol.

But this is not about that. Its about the fact that my body was under intense trauma as the white cells were densely packing my marrow, vessels and organs. I was awash with the leukaemia. Just like yours was. Ours is a similar story - I see that as yours unfolds.

But I went through the same protocol that you went through. And now, some years later, I get up at 5am (4.30am when its so damn nice like today) and travel about 100 miles to work and 100 miles back again, each day Smile. At weekends, I wield a pick-axe against stubborn walls, or replant hundreds of trees, or run a few miles, or even teach boys to ride a Bike and another Bike and a Bike with stabilisers...!. No resemblance to how I was back then.

You can do all this.

You have a decade advantage on me.....if you believe the statistics. We can get comfort from them when it reads in our way. We recoil in horror when they do not. It rains. It shines. You DS2 rides his Bike anyway.

There is only one statistic that matters - its 0% or 100%. These are the only two numbers. You will know by now that - whilst I feel intense pain for the injustices in this world, and do frequently shed tears for those that hurt - I do not take prisoners in me (*). Leukaemia did not and does not make me a victim.

You are strong enough to defeat this leukaemia, with God's help. You know that. Your posts speak that from the very start. That is why I responded - I felt your pain and strength. You have a fantastic medical team around you. We must not forget them in all of this. You are in specialist care now. Amazing care. People who save lives daily. You will go on for a BMT. As I said before, you are standing on the shoulders of giants. Including your own, it would now seem Smile.

Do not take prisoners either.

Inshallah.

IwishIwasmoreorganised · 19/05/2014 22:07

Great post desert.
Xx

HypodeemicNerdle · 19/05/2014 22:48

Mumsfret and deserttrek

Amazing and thoughtful words from you both.

And biscuits, tough night for you but day one of round 2 is done and out of the way, and you get to come home at the end of it instead of being stuck in hospital. And you made me snort with your 'don't be cocky and count your chickens'! You've got a fab sense of humour!

Spinaroo · 19/05/2014 23:15

Biscuits, you are undoubtedly going through the mill both physically and emotionally. But I loved what you said yesterday about recharging or storing up for the next stage and coming home to your family every night for as long as possible will give you what you need to fight, whilst the medical team do the science.

If the army of well wishers could make a difference you would already be cured- but, like many others, I do strongly believe you will be.

Since you started your thread, I have offered many a prayer for the return of your good health- there is little else I can do. desertrek is who you need in your darkest moments of doubt -what a gift to find in such circumstances. I hope you can take some comfort and hope from someone who has walked this lonely and difficult path.

Sleep well xxx

biscuitsandbandages · 19/05/2014 23:33

Desert... for that post and all the rest of the support and hope you have given me....you ROCK!

As do the rest of you :-) xx

Back on track this evening as I doze off with my daughter next to me snoring her little heart out. This is a blip... I will be someone who HAD leukaemia but noone really remembers....because what ive done since is far more interesting!

OP posts:
onedev · 20/05/2014 00:33

Absolutely biscuits.

FidelineandFumblin · 20/05/2014 00:39

I think your daughter has magical properties biscuit [smile}

FidelineandFumblin · 20/05/2014 00:40
Smile
Stuffofawesome · 20/05/2014 07:34

great post desert. Amazingly strong women everywhere you look.

NigellasDealer · 20/05/2014 07:41

and men stuff Wink

AWombWithoutARoof · 20/05/2014 07:48

Morning Biscuits, hope your bag is packed with snackage and crafts a go-go for today's medical marathon.

You're doing so well, keep going.

desert, you write fabulously and with such support. Good on yer.

IwishIwasmoreorganised · 20/05/2014 08:26

Look out.

It's round 2 day 2 and Biscuits is in her way (complete with food!) to get you!

Tootyfilou · 20/05/2014 11:32

There are some truely amazing people on this thread .
Hope day two goes well biscuits... You are awesome .

biscuitsandbandages · 20/05/2014 17:39

How are you doing WEEBARRA and MUMSFRET ?

Not the best of days. I reported for duty at 9am with snacks and my ipod, finished some crochet neutrophils off and was out by 11.30.

So far so good.

Drove home and tidied a couple of things when I got here. Made lunch, ate lunch and since then have been overwhelmed by nausea and tiredness.

This wasnt part of the plan. I feel awful but some of that is probably psychological as physically I wouldnt say its any worse than early morning sickness. Except im not 6 weeks pregnant im six weeks into chemo.

My brother suggested looking at it like im growing myself a new life rather than a baby. So tthere will be sickness and pain but its worth it in the end.

I think he is probably right.

Dont feel unwell enough for antisickness meds but did have a nap. Mr biscuits is worried. He is home early and has gone to collect the children.

I feel bad for not collecting the two little ones on my way home but I just wanted an hour to rest...by the time the hour was over I felt too awful to drive and get them.

Grrrr.. this is annoying. Stop it chemo. We had a deal! You are going to just kill the cancer cells ok and leave the rest of me alone!

OP posts:
imip · 20/05/2014 20:47

Ah biscuits, I've finally made it through the new thread. Great to see you home where you belong. Sorry the chemo is making you ill Sad.

For different reasons, I know those doubts and fears that creep into your mind in the wee hours. I wish i knew how to make them disappear. You're an incredibly brave women. Your positive posts are amazing, and I've just read the whole thread and they do outweigh your moments of doubt. And frankly, when you are feeling shit, it's more likely that you are going to feel that doubt. Wishing you lots of strength, biscuits ((xx)). There are some absolutely amazing posters on this thread, had brought a tear to my eye. Xxx to all...

Mumsfret · 20/05/2014 21:10

2
Hi biscuits. Hmm. A tough day indeed.

Don't despair. Without wanting to sound trite, I guess there will be days like this. Is this the first time the chemo's made you feel so rough? Do you think it's the cumulative effect, a different dosage/concoction, or just 'one of those things'? I don't know enough about the treatment regime you're on to advise but let's not assume it's always going to feel like this. I know of a number of friends who've gone/are going through chemo & who've found each session has a different effect, some making no discernible difference & others really hauling them roughshod over the proverbial coals.

Don't be so hard on yourself, either. I marvel at the amount of energy you've had to date while dealing with this blasted thing you're facing! If there's one thing that (my own, very different) illness has taught me, it's that preservation of self and conservation of one's resources is an absolute priority. I'd never had to think before about personal resource management but it's something I've really had to learn to incorporate, in planning for things, in not planning for things, & just generally in living my day-to-day life. I can do a lot/many/most things I want, but not in the blind, thoughtless way I did BC (before-Crohn's). Now I have to think about and strategise how best to juggle everything, otherwise I risk taking on too much and ultimately just crashing & burning. In this respect, for you, I'm heartened to hear Mr Biscuits was able to step in while you rested today. Does his job enable him to be a bit flexible? Great if so, as you may need this kind of crutch for the next wee while.

I think your brother's visualisation idea is a clever one to help you through the new-style morning sickness! Much like pregnancy (!), it's like a necessary evil you've got to go through to get to the other side/over the rainbow, to a newer, better, fixed "you". No pain, no gain; that sort of idea. I guess my situation (though in many ways very different) is similar.

Speaking of which, I'm doing ok (thank you for asking). My family help has withdrawn this week so am back up to almost-normal mum-duties, which is nice but also hard. I'm having to think carefully in advance of any plans whether I can cope/manage (& in my own head I used to be a real go-getter who thought she was invincible so - trust me - it's hard to adjust to my new reality!). Physically, I'm feeling much stronger, just one month on from my surgery, but I'm still not back to "normal", yet, and s'times the challenges of family life can be very draining! Psychologically I'm in a better place than I ever thought i'd be when I initially hit my rock bottom. I have to cope with an ileostomy (stoma & bag) in the short term, as most of my large intestine has been removed. This has been a huge hurdle to overcome but I've surprised even myself by coping pretty well in the circumstances. The hope is that the ileostomy can be reversed in a further operation later this year, when my small bowel should be reconnected to (what remains of) the large, at the lower end. The hope is that, with a modicum of adjustment, I'll be able to function relatively normally thereafter. But it requires more major surgery, so my current phase is all about gaining strength and resilience, fattening myself up, improving my nutritional status, and - well - just healing. I know we're in very different camps in terms of our respective conditions, but I see many similarities and parallels. Perhaps that's why your story touched me so much. That, and the fact we were going through our respective issues at the same time not long after giving birth to our beautiful DDs!

Anyway, Biscuits, enough about me! This is your thread and I respect that fully. I just want to be able to provide what support I can, based on personal experience and - to some degree - a feeling of knowing where you're coming from. Other (wonderful Mumsnetters) here have more direct experience of your condition and at times I worry that I can't/don't say/post the most helpful things, but i aim to support/guide/empathise/sympathise/handhold - and I just hope that is enough.

Stay strong and don't let days like today cloud your remarkable vision.

MyNewNormal · 20/05/2014 21:30

My brother suggested looking at it like im growing myself a new life rather than a baby. So tthere will be sickness and pain but its worth it in the end.

Have been lurking for ages but your brother's words have really helped me view my own chemotherapy (for colon cancer) and all its awful side effects in a positive light. What a wise brother you have biscuits.

blondepip · 20/05/2014 23:45

I completely agree with the pregnancy analogy, it is truthfully the only thing I've been able to liken it to, and at the end has emerged a new me! I'm stronger mentally, I have a different view of life although in someways I've not changed at all. But there's the me before and the me after, much like a pregnancy!

Don't be stoic and refuse the anti sickness you don't have to be throwing up to need them, nausea is precisely the time, just drink fluids as they can cause awful constipation.

The activity of getting too & from hospital can be all exhausting, your first round you were stuck in a room not going anywhere. It's ok to feel grim, it's what's expected and a great reason to get watching box sets and spend time on the sofa with the kids.

Today I've been to yoga and my strength is returning massively that was in between working all morning and afternoon, I have had a near normal day, 8months post transplant.

Also the stats thing - I was facing worse & worse stats, at one stage I was told 30%, I'm here and healthy and back to being a mum! Keep believing it goes a long way!

Panicmode1 · 21/05/2014 06:22

Be kind to yourself Biscuits, you're doing amazingly well; fighting a mental battle as well as a physical one IS tiring, and you are bound to have ups and downs. Mumsfret, desert, blondepip and weebarra are full of eloquence and can offer much more direct help than I can, but know the MN cheerleaders are in full voice for you.

Swex · 21/05/2014 10:56

Hi biscuits. I'm sorry you felt so rubbish yesterday, but I loved your brothers words. And I hope today is better!

Weebarra hope your ok and heal well mumsfret

Only1scoop · 21/05/2014 11:00

Biscuits sending hugs....

Hoping the nausea subsides really soon.

Stuffofawesome · 21/05/2014 15:43

fyi spearmint and lemon essential oils good for chemo sickness. also acupressure point on inside of forearm 3 finger widths up from wrist crease. press between tendons like seasickness bands. also could try queasydrops available online.

acebaby · 21/05/2014 16:53

I don't have much to add to this thread (except my very best wishes of course). I just wanted to say that I just had coffee with a colleague who had a very nasty form of leukaemia that did not respond well to chemo. He ended up having a bone marrow transplant, and being off work for a year - with much of that time in hospital.

That was 6 years ago, and he is fit and strong now.

OneWaySystemBlues · 21/05/2014 20:29

I used seasickness bands like these: www.amazon.co.uk/Sea-Band-Wrist-Band-Nausea-Relief/dp/B000LNEB0Q when I had chemo for a different cancer. I don't know if they worked or not - I didn't dare take them off! But I got through without much nausea. Might be worth a try, they're not too expensive so if they're rubbish you won't have wasted much money. Really hope you're feeling better soon, I've been reading your whole story.

biscuitsandbandages · 21/05/2014 21:56

Loving the advice and positive stories :-) thank you

Biscuit is crumbling physically but mentally hard as dwarf bread.

I think the effect of coming off the steroids combined with driving to and from the hospital is probably not helping. My energy levels are rubbish and even typing takes a massive effort.

But it could be worse.... At least I'm still home :-)

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