Struggling with everything

You're absolutely right - this isn't how life should be. I'm really cross on your behalf. You can whinge all you like. 

It is hard with children - I struggle too. My mum comes to help us out each week and stays with us Sunday to Tuesday and I really struggle with that too as I feel I should be able to do it all myself. It also means she's in my space and I feel like a sick person all the time as she fusses... My mum gets them to school for me and runs them around to their activities. The rest of the week I have neighbours and friends and my husband to help although I do bits myself which keep me going. I have people I can call if I'm really stuck. It's hard accepting the help but I just don't have the physical stamina to do all of it and not driving means I'm somewhat stuck for things a little further afield. 

My husband's work have been really good at giving him more flexible hours and he now goes in very early and comes home just after school time (mostly) which means I have help. I appreciate this is very different to having a pre-schooler. I had mine in a private nursery for parts of the week when they were little as I had 3 under the age of 4 at one stage and just couldn't cope. Would that be an option for you? - Calli wouldn't have to be there full time just times that would give you chance to rest and re-charge. Don't some free hours kick in after the age of 3 too? I know it's changed slightly since I was using it, my youngest has just turned 7 .

We've missed your posts - I've been amazed by your positive outlook and bubbly nature - please know you're not in this alone. 

Hoping that journey home is more comfortable that you're expecting. Welcome home! 

xx

Oh Button, I'm so, so sorry. 

There is absolutely nothing 'whingy' in your post, this is NOT how life is meant to be. You have every right to be  ****ing furious, I certainly am on your behalf. 

All I can say is, put the oxygen mask on your own face first. 

You need to get your pain under control and your hip assessed. That will mean childcare for Calli, but it will also give you half a chance of spending some quality time with her when things stabilise.

I cannot begin to imagine how you young mums cope with your wee ones on top of everything else. I wish there was something I could say, I wish all the love and good wishes from everyone here was enough.

Hope the journey home is better than you feared. Sending love and hugs xx

This is absolutely not how life is meant to be. You have every right to have a moan and who better to moan at than us? I hope you feel better when you get back to your own home. Calli (lovely name btw) will also be in familiar surroundings which might make her easier to look after. I hope so anyway. Much love and take care. Jx

Hi Button

You're not whingeing, you're having a tough time, something none of us ever want to experience. 

Constant pain is horrible, mine only goes away when I sit down. That's the benefit of the wheelchair, I can can get out and about. The amount of morphine I need to be pain free hasn't been reached yet, and I'm not going to reach it either because a chronic pain doctor has me on a morphine reduction schedule because he says that if I continue with such a high dose is going to take ten years off my life! To reach a pain free point, I would need to go even higher but then I would have a wooly brain. I hope you get some pain relief soon Button. 

My haematologist at the cancer unit says I mustn't go out of Europe in case my blood situation worsens because I wouldn't be able to get proper care and I will die, and she said that emphatically.

So I'm going to miss my eldest son's wedding in Bolivia on the 29th of February next year. Although to be fair, my son doesn't want me to travel for 50 hours because if something happened to me, he could never forgive himself. He says, probably rightly, that I can use the money it would cost to get there for a better celebration when they come to Northern Ireland. Her parents won't be attending the wedding either, it's taking place in the British Consulate by the British Consul. It's not a marriage of convenience either, they met at Aberdeen uni 3 years ago! 

As someone else has said, Calli is a lovely name. Is it short for anything? I hope you're lying back relaxing after the long journey from France. Is the pain any better? Is the hip any less painful? It's tough looking after a small, so active child when you're unwell. Dig in there Button and stay strong.

Take care

Tvman xx 

Thank you for your supportive words.  I know we all have our own issues and the fact that we manage to give support one another is incredible,  but i suspect it's cos we know how bad it can get. 

Hospital for me tomorrow so hopefully I'll some things sorted...I've got a long list lol

Oh tvman I'm so sorry that you are going to miss your sons wedding.  But 50 hours is a looong flight esp if you've been told not to fly further than Europe. I'm sure he will understand.  Can you face time someone during the ceremony so you can see it? I did read your post about your morphine use and I'm so glad you are reducing it. 

Gobaith Calli is only 2 but I think we are eligible when she reaches 3. Your post really helped me and it nice to know that I'm not The only who struggles.  Glad you have lots of support around you.  X

Julie xx

Hi button 16

so sorry to read your post 

hopefully you are home by now and feeling bit better in your own home with your calli and husband

i can only imagine how hard it is looking after a little one, I have 4 grandsons and have trouble looking after them 

wishing you less pain 

janet 

( I have breast cancer with liver mets and just diagnosed bone mets ,having MRI to check extent of  bone mets  , having fulvestrant ink and abemaciclib tablets,not sure about bone treatment as I only have 1 kidney now )

anyway positive thoughts to all

xxx

Hey Button

U do know we have earned the right 2 have a whinge & ur fellow incorrigibles can empathise with everything ur saying.

I manage 2 cope being on Paracetamol & Morphine with a touch of Naproxen & Gabapentin added 2 the mix & still cope & work fulltime.

Have the medics offered any radiotherapy 2 the affected area? Way way back just after diagnosis I was temporarily in a  wheelchair  due 2 hip/leg pain but following RT the pain was reduced. My greatest wish was 2 b able 2 walk the dog & get out in the fresh air under my own steam.

I'm off back 2 hospital nxt week 2 start a course of RT 2 try & reduce my alien boob explosions...not really looking 4ward 2 this but running out of options.

Hope u get back home safely hun.

WB xx

Hi Button

Now you're home you don't sound so down. I know that if I'm not well I just want to get into my own bed and it's where I feel better psychologically. 

Good luck at hospital later, I hope you're well in the land of nod right now. I was, but since I have reduced the morphine intake I'm wakened by pain more often. I have trapped nerves in both elbows, and the nerve pain is so bad. It's a bit like Carpal Tunnel Syndrome that a lot of people know about but twice as bad, more of the hand and more fingers in pain. It's called Cubital Tunnel Syndrome. I'm on the list for an op on the left elbow first but the lists here in Northern Ireland are so loooong! 

I'm not happy about missing my son's wedding, the 50 hour journey involves 3 flights, 1 to London and then there are various ways to get to La Paz, all involving 2 flights because there is no direct flight from London to La Paz. Then La Paz is the highest capital city in the world, 4,500 metres above sea level and the oxygen levels are low. Not what I want when my cancer means the red, oxygen carrying cells are in short supply!  My first born and I so want to be there with them. The doctor was adamant that I might die in if I went, then she gave me a massive hug. She's a large lady and I think I might have disappeared for a second or two lol. I think my son is going to try to get it live in our family Viber group so that'd be great. 

I hope you get some sort of good news later Button. Fingers crossed for you. 

Take care Button 

Tvman xx

Hi

I’ve just been reading through this thread and I’m so sorry to hear you’re in pain. I do know the feeling of being unable to be the mum we want to be. There’s a lot of anger and sorrow and powerlessness in it. This is indeed not how life was meant to be. 

The mum in me wants to fix everything and suggest solutions and basically make everything better. If only all problems were solved as easily as sprinkling fairy dust on a two year old’s bruised knee then life would be just dandy. 

I dare say you’ve been through the options but I’ll try anyway. My girls were bigger than Calie when I was diagnosed first - my youngest was 10 - and I had a wonderful group of friends who created a “wall of women” (as they called themselves) that supported me and stopped me from falling over. They took over the school run, brought me meals and came with me to hospital. It was hard to accept that I couldn’t do it all myself but I found that when I asked for help, it was there. People do like to help but often don’t know what to do for the best. It’s kind of like I had to be the project manager and delegate the tasks but doing that meant facing up to not being able to do things myself and swallowing my pride. Not easy - at least not for me. 

 Do you have friends who might commit to regular play dates for Calie, say one morning a week each? Or can come over with their toddlers at tea time and make supper and do bath time? In my experience, toddlers love having a bath with their friends. If Calie is too little for nursery, is there a good local childminder who can have her a couple of mornings a week? 

I hope hospital goes well today and you don’t have to wait too long on an uncomfortable waiting room chair. I hope you can get a plan in place to manage the pain. 

Keep shining like the star you are

love and hugs xxx

Hi tvman

It’s so rubbish that you can’t plan to be at your son’s wedding. Why Bolivia of all places? What’s wrong with a knees up in the village hall? I do think it’s wonderful that technology means you can be there virtually. It just blows my mind. And he’s right - use the money you’d spend on flying for a really great party when he comes home. Now that’s something to look forward to. 

Good luck with the RT next week . I hope it delivers for you 

xxx