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Mum diagnosed with leukaemia in March now in intensive care with unknown infection

(20 Posts)
bumbleclat Tue 02-Aug-16 01:57:17

We've seen her through three gruelling rounds of chemo, each of which she has bounced back from relatively well. Throughout tgis while horrible ordeal she has been herself, smiling, chatting and focussed on getting better.
Yesterday I went to the hospital and she was so frail couldn't move her arms or head or anything, needs a catheter because she couldn't pass urine and completely delirious and hallucinating.
She was moved to intensive care today because they can't figure out where her infection is coming from, they think it's either a lung infection, a clot on the lung, a stroke or meningitis. They've just given her a lumbar puncture to find out if it is meningitis.
I'm 20 weeks pregnant and am worrying about my baby now as have felt a bit under the weather today hoping I haven't contracted anything like this m from her.
My poor Grandmother who's 95 and very fit and well is beside herself with worry, she's looked after my mum a lot over the years due to her mental health problems it's such a punishment for my granny to see her daughter like this sad
It's all so difficult, mums in a hospital over 100 miles away and Im just here worrying all the time.
Sorry to ramble just needed to write this all down.

stealtheatingtunnocks Tue 02-Aug-16 02:44:33

<hug>

Things to do:
get a hospital pack for yourself organised. toothbrush, clean knickers, packed lunch or nice things that you'd nibble on, phone charger, phone numbers, cardigan, pillow, book/magazine.

Find out:
Are there showers for relatives?
Where is the nearest cafe? Hospital canteen food will be revolting, get some good stuff.
Can you stay, or, is there somewhere you can nap?
Can you get parking charges waived?

Things to remember:
Your mum's being well cared for, knows you are there, can hear you and doubtless, appreciates it.

<another wee hug>

Rainbowqueeen Tue 02-Aug-16 03:24:39

So sorry to hear that. I hope you get some good news soon

In the meantime she is in the best place, getting excellent care so focus on caring for yourself.

Hugs from me too

PitilessYank Tue 02-Aug-16 03:25:13

I am sorry that your mom is going through this, and it sounds really tough on you and your grandma as well.flowers

Try to not worry too much about yourself getting sick-your mom is vulnerable to infections because of the cancer and the chemotherapy, but your immune system will protect you and the baby. But do take care of yourself-get lots of rest, eat well, and take time to unwind in between caring for your mom.

bumbleclat Thu 04-Aug-16 04:02:08

Thank you.
I've been told they're awaiting blood test results for CMV (which is a usually harmless form of herpes) but because she's so immune compromised it could be causing these bad infection symptoms.

They're still waiting for meningitis results but she hasn't improved one bit for days she's completely overheated, unresponsive and can't breathe well without support.

I'm sorry to say that having researched CMV, I find myself in an impossible situation where I can't go and see her because (according to NHS website) this infection could infect my unborn baby.

This makes me feel really guilty because a)the consultant doesn't think there's a big risk of me becoming infected and b) I am honestly a bit scared to drive three hours, see my mum all hooked up to various machines looking horrendous and c) drive three hours back home when I'm not feeling 100% energy wise because of pregnancy.

Part of me thinks 'oh bumble, stop beating yourself up' and part of me thinks that I'm being heartless for 'finding ecuses not to' visit my own mum in intensive care.

Up until now, I've made the trip down to visit her every weekend since March and as it's become harder my, DH has accompanied me and done the driving.

I just feel I'm in some moral court who will not let me relax with any decision I make sad confused

muddypuddled Thu 04-Aug-16 05:20:59

Sorry to hear about how unwell your mum is. I'm a sister in an intensive care unit. Unless your mum has been isolated to stop infection spreading to other patients I wouldn't worry too much about catching anything yourself. As someone else said, the chemo will cause her to be very inmuno-compromised so she is likely to catch anything going. She may be isolated to protect herself from other patients though. It sounds as if she may have sepsis from an infection as you say she was having difficulty passing urine and hallucinating. This is completely survivable and there have been lots of recent campaigns to improve sepsis care so I'm sure wherever she is she will be getting the best care possible. She will remember very little about her time in intensive care, mostly due to the hallucinations but also because of some of the medications used so it's likely that she won't even remember whether you visited or not. I think you have to think what would she want you to do. My guess is she would want you to focus on your baby and looking after yourself. Do what you feel is necessary. Nobody will mind if you ring to see what's going on several times a day but it may be worth having a visit to put your mind at rest and speak to her nurses/doctors. I have also had two pregnancies whilst working in itu and have had to take no extra precautions except for not look after someone who had shingles. Hope that helps.

bumbleclat Thu 04-Aug-16 05:49:57

Thanks so much muddypuddled I have decided not to go down because I feel a bit ill so can't cope with 6 hours of driving plus the fear of making her worse. I don't know if feeling ill is psychosomatic but I really appreciate your post. Thank you.

CustardCream1 Thu 04-Aug-16 05:57:34

I'm so sorry to hear about the situation you are in and for your mum. I understand your concerns for your baby and feeling that you need to stay away from your mum at the moment. Believe me, your mum will understand. In the meantime can you get medical advice as to when it is safe to see your mum?

PitilessYank Thu 04-Aug-16 05:59:17

If I were your mother I would support you staying home and I would tell you to be kind to yourself.

She knows that you love her and she wouldn't want you to feel guilty about anything.

Hufflepuffin Thu 04-Aug-16 06:21:55

I was pregnant while my mum was having chemo and got an infection. We live locally so I was able to pop by most m days but she always told me not to, she liked to think of me tucked up on the sofa, so on the days I couldn't make it we sent her a picture of just that! She was lucid though.

Her mysterious infection ended up being in her picc line, which i would have thought would be the first place they check but it wasn't!

bumbleclat Thu 04-Aug-16 09:58:21

Thank you.

The Consultant rang me this am and told me that she's not infectious and it wouldn't be a risk to me or baby but after being awake since 3:30am worrying I can't risk it anyway.

It's tricky with my mum, I've never had a tipical mother/ daughter rl with her because she has had bad mental health problems and left me and my sister with my dad when I was 2 (I'm now 32) but I've always had a very special, loving relationship with her through visiting regularly and I think it's even more counter intuitive for me to put myself first than it is for someone who was actually mothered in the traditional sense by their mum iyswim.
Thank you for your replies.

Hufflepuffin Thu 04-Aug-16 10:12:28

That does sounds really hard. Sending you lots of love, and hope you're able to see her in a more calm way soon.

lougle Thu 04-Aug-16 10:44:42

I think you may have to just accept that for whatever reason, you don't feel able to visit right now. Your Mum is not infectious. There is no risk to your baby. If you wanted to go you would drive the three hours and being 20 weeks pregnant is no reason not to drive three hours in itself. So, rather than trying to come up with reasons why you can't visit, you may be better to accept that you are finding the thought of seeing your Mum in this very weakened state distressing. Which is very natural.

Hopefully the unit will allow you to get updates via telephone. Our unit does (I'm an ICU nurse). We would also facilitate a telephone conversation with your Mum, holding the phone to her ear if necessary.

I hope they find the cause of the infection soon. They'll be giving her strong broad spectrum antibiotics regardless while they try to get more specific information about the source of the infection.

Dingdingdong Fri 05-Aug-16 07:12:59

Hi bumble

I just wanted to say I'm so sorry that you are in this situation and that I understand about visiting your mum, if you can't do that just yet then I am sure your mum will understand. We all have our own breaking point that sometimes we reach and just can't move beyond at that point.

I am in a slightly similar situation if it helps at all - my DF was diagnosed with terminal cancer 6 weeks ago with only a very short prognosis of a couple of months. I am on my own with two DC under 5. I have been going up to see him when I can and was meant to be going up with the DC and staying in a rented place for a week. It is a 8 hour journey on trains and I don't know why but for some reason I just can't bring myself to go up with the DC. I keep coming up with lots of reasons but really it is just that for some reason I can't face that, it seems one thing too much for me to cope with. I am worried that I will regret this later, that I am selfishly making excuses but I still can't seem to persuade myself.

You are in a particularly difficult place as you are also pregnant which must makes things even harder. Please take care of yourself and try to give yourself the same understanding you would to anyone else. flowers

bumbleclat Sat 06-Aug-16 11:51:04

Thanks so much.
My mum died yesterday afternoon Just wanted to let you know that my dear old mum died (apparently peacefully) in intensive care, I'm in shock and very sad but in a way, relieved that she's liberated from her suffering body, she's been very lucid up until the past five days and has valiantly come through three chemo rounds and leukaemia, she just had a very aggressive infection at the last minute which her body couldn't cope with.
Since finding out about her cancer in March, I've been to see her every week (apart from when I've been too germy) and spent some really good quality time chatting, laughing and enjoying her company as I always have done. I'm grateful that I got to have her in my life.
Of course I feel bad that I didn't go on Thursday but if I had gone I'd be feeling like I'd given her the germs that tipped her over the edge if the kind wants to attach to guilt it will and I'm just not going to go there.

bumbleclat Sat 06-Aug-16 11:52:16

mind not kind

muddypuddled Sat 06-Aug-16 13:34:04

So sorry to hear of your loss bumble xx

PitilessYank Sat 06-Aug-16 15:45:11

Bumble-I wish you and your family well.flowers

ImperialBlether Sat 06-Aug-16 15:56:01

I'm so sorry your mum died. flowers

I just wanted to say that maybe her leaving you with your dad when you were young was the kindest and most motherly thing she could do, given her own problems. It might not have seemed like that but perhaps on some level she knew it would be better for you to be apart from her than to be with her.

Best of luck with your pregnancy.

whatisforteamum Sun 25-Sep-16 08:53:03

So sorry for your loss xx

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