Needles and Neutrophils: The Hobnob Chronicles

[biscuitsandbandages]

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

Have a lovely bank holiday, Biscuits. Did you decide what to do about the August one- I remember you saying a while back you didn't know whether to or not- do you know where you will be in terms of treatment at that point? Xxx

I found out the cost of a private LP today biscuits - not sure if I should tell you or not.

Yay to feeling on top of the world. How long do you have to stay flat for?

I mean, I'm not sure whether it would cheer you to calculate how much you saved

So glad you're feeling on top of the world; what a great place to be - have a super bank holiday!

I hope the sun shines for you & you have a lovely three days.

I hope the 3 bank holiday days are as special as they can be, you all deserve them xxx

Well done for getting through the LP, biscuits. All you can do is keep bravely showing up for your treatment and pouring your love onto your family. You are a star! Have a lovely few days with them.

Oops! Just woke after 5 hour nap curled up with bany r (who is also finding nursery exhausting)

No oops about it; you both must have needed it! Lovely feeling to wake with your baby snuggled into you. I bet Baby R loved it too

Hope you slept ok last night after your long nap!

Well done for getting through another LP! Still here checking in every morning to see how you are doing and cheer you on.
Hope your weekend is going ok Biscuits.

My energy levels are not good. Mr biscuits has taken the kids out so I can rest.. but I miss thrm and feel guilty.

I could do all this id I knew it would work.
If I knew it wouldn't I wouldnt need to reserve energy for healing and I could play with my children.

Your body needs rest to heal. Your kids need you to devote your energy to that just now so that you can play with them later. If the professionals thought you didn't need to put yourself through this treatment, they would tell you.

Rest now whilst the kids are out-they are having fun confident in the knowledge you are at home waiting for them. With medicine and prayers, may this be what they know long after they have fled the nest for more than a few hours xxxx

You are right. Thank you.

I think im just feeling vulnerable as this cycle has affected me a lot more than the first. ... and also because it feels like my last chance to et into remission. In the first cycle I had the back up of 'well there is always phase 2'

But on the other hand, im a quarter of the way through this cycle and im still standing. Tires and my legs ache all the time. Im imaging its the eeffect of the chemo on the marrow in my long bones in my arms and legs that make them ache though it probably is just the muscles.

What Spinaroo said...

Hear, hear.

Better to assume there is a point to all of this treatment, conservation of energy, and resting, as there probably darn well is! Stay positive. Please. You're doing so well, strong lady.

Biscuits - try and see the tiredness as a positive.

If treatment is affecting your body in this way try to imagine what overpowering effect its having on the cancer cells. Use visual imagery to see the chemo eating away at the rogue cells and leaving you tired because all the effort is going into fighting the bad cells rather than giving energy to the good

Easy for me to write as I'm not in your shoes but a little idea to focus on xx

Also are you and DH getting help with the day to day tasks such as shopping, cooking, cleaning etc etc???

Not a lot of help with those things. Mum is helping a bit with child supervision at the weekends but she gets very tired and cant do much. We pay for a couple of hours cleaning evwry fortnight but otherwise its just us for household stuff. We are managing ok. Just need to pace ouraelves and I dont want to. I want to be ok.

My chest is getting intermittently tight again. Im scared its the fluid getting worse again. It really shouldnt be if the chemo is working as the ct after cycle 1 showed the lymph nodes that were blocking it had cleared

Would you let some MN help out biscuits? I know it is difficult to let strangers into your life, but there is so much love and support for you out there. I live in Wales ( hence all the cwtches!) but I am sure there would be some lovely MN near you who would be only too happy to help.

It must be very difficult for the two of you to have to cope with everything alone. Maybe it is something you could think about.

Stay strong, you are wonderful. xx

Believe me, I know about chemo tiredness. I ended up with 16 chemo cycles rather than 8 as I didn't cope hugely well with the first 4. I became proportionately tireder with each cycle but was useless at letting others help.
Does your HV know what is happening? Sometimes they can access help.

Homestart is one organisation who might be able to help in some way, biscuits. And weebarra is right to suggest checking in with your HV. If you have a decent one they can do a lot. They were really supportive of me. They were also instrumental in getting me referred (via GP) for CBT (which I asked about for myself).

I hope the chest-tightness subsides, and easier said than done but try not to worry. I don't want to be Pollyanna but am so hopeful things are moving in the right direction. Perhaps residual pain/tightness there is to be expected in the circs, there may be another explanation? The last CT scan was the last piece of objective evidence, and it was good = reasons to be positive?

Keep going.

We are ao lucky with all the help we have had to look after the boys I just dont think we can aak for more though I will look into home start. Habe had issues already with HV discussing our situation with one of her colleagues who has notjing to do with our case but happens to work with mr biscuits grrrrr. Not impressed. She also Insisted on a home visit to see how mr biscuits was coping when I was an inpatient which we found very intrusive. Fair enough if here had been concerns but just because a dad was looking after his children alone?

I would have been livid had someone come snooping around my family and hubby's ability, fair enough if has asked for help, do I also took tiredness as a good sign and was actually happy when my hair fell out, took it as a good sign!!

Hope you are enjoying the weekend biscuits and I'm sorry to hear youve had nausea and tiredness. You are coping brilliantly.

I hope im not being too trivial on such an important thread but does your dwarf bread reference mean you are a discworld fan?

Is there such a thing as a non discworld fan? ;-)

Hang in there biscuits. Just hang in there.

Im still waiting for my hair to fall out with dread and a degree of impatience. Its coming out in handfuls the past week but there is still enough that you cant tell unless you are me!
I dont want it to go and its going to really upset me when it does but since I know it will I wish I could just get it over with.

Chest still tight. Its definitly the effusion. Feeling is the same. Worried but nothing I can do as the haematologists are studiously uninterested in it and the cardiologists dont seem particularly concerned either.

Which is fair enough except its my heart and im konda fond of it.