I'm confused & a little scared!

[AlliTB]

Hi all, as you know my Mum is now home but it's not been easy. She now has her bed downstairs as it's too much for her to use the stairs & she got really worried she would end up pulling my Dad down with her as the other day her leg gave out whilst coming downstairs. She had a bad day yesterday, needed her nebuliser as well as oxygen. She is on oxygen the whole time now, is this quite normal & will it change once she's starts to get stronger? I'm trying to cling to the hope this is temporary & she'll improve & that we'll get the chance to do things together again, go on holiday, enjoy watching the girls in the paddling pool in the summer, but she seems so ill. I'm scared this is it, I have no direct experience of cancer other than my Mum so I don't know what's normal but I have always thought she would have a good period at some point. Am I too impatient? I know she's just out of hospital but I am confused by her need for oxygen despite all the treatment. Another of my rants I'm afraid! It's my turn for a lie-in, Darran got up with the girls, but I can't sleep. Xx

[Billculbard]

Hi Alli

I'm sorry I can't help as I didn't go through needing oxygen, and being reliant on a nebuliser or even home care to this extent. We're all different and have different needs during stages of recovery, so I am kind of helpless in that I can't give you any sensible advice.

I think all you can do is look after your mum and the rest of your family as much as you can, without wearing yourself out. If it gets too much, call in the professionals. This isn't admitting defeat, or the end, it's simply admitting that things are getting too much for you, and that you need help. You'll be no good to anyone if you don't look after yourself.

Take care, Bill x

[loopyloo]

Hi Alli,

I agree with Bill, everyone's recovery is different.

Going back to my experience with my mum, I wanted to do everything myself for her but I didn't realise how much it would take out of me both mentally & physically. I looked on it that it was my duty to take care of my mum. It was my mum that finally took it out of my hands and asked for help because she was worried I wasn't spending enough time with my eldest who was only a toddler at the time. Even though I resented the help at first it became a godsend for me, it gave me time to get away and recharge my batteries and spend time with my son. So please accept any help that is offered.

My mum didn't have lung cancer she had breast cancer so I'm also unable to answer your question regarding oxygen.

Hugs

Wendy x

[AlliTB]

Hi Bill & Wendy, Mum has been poorly the last couple of days & has been taken back to hospital this morning. She has another chest infection & some more fluid in her lung. It's never ending. My dad & brother are with her & I'll go in later. Mum doesn't seem to have any up times at the mo. I always thought when I heard of someone with cancer that at least it gave people & families an opportunity to do things they wanted to do, that special family holiday, a spa day with my mum, I'd settle for a trip to the supermarket as my mum is the queen of shopping. I'm starting to fear we won't get to do anything. I do hope to put a positive blog on soon. X

[loopyloo in reply to AlliTB]

big hugs coming your way Alli xx

[daxiebabe]

Hi Alli

I know when my Dad first got diagnosed I wanted to know stats, prognosis, treatment and anything else that could be relevant, but every person is different. What you need to do from this point forward is find a new normal so that instead of worrying about how she used to be like, try and focus on trying to make the new normal as much like the old normal. My Dad was never a fan of shopping, but now that he cant walk much of a distance he feels left out of things; the last time we took him we hired a motibility scooter so that he could come along with us. Its little things like this that will keep her close, but not wear her out.

I really hope your Mam makes a recovery so that you're able to do a bit more with her, I suppose she just needs time for her body to deal with everything that is going on.

Try and keep positive, but like Wendy said above, there are support groups run by charities, and nurse specialists who are amazing in the support they give, so use them if you feel you need them (I email my Dad's nurse specialist all the time and she has been wonderful).

Take care

Helen x

[AlliTB]

Thanks Helen. You said Mam, are you a Geordie? My mum is originally from Newcastle. I am trying to adjust, I'll keep working at it. Hope your dad stays well & enjoys his outings. X

[katw]

Hi Alli, you are doing brilliantly - there are no certainties with cancer but my mum had several set backs but the chemo and radium allowed her time to enjoy some family ocassions - but sadly missing many. I used to try far too hard to give her days out etc... What I now realise -she told me - is that she just needed me there some of the time - nothing more. Simple things - a chat, looking at photos, watching the children (which you mention) these are the big things. Do take a break when you can and don't try to do it all alone, sometimes one family member takes on the main - I did - I wish now I had spent more time with my husband who less than two years after losing mum has been diagnosed with lung cancer ( and the reason I am on this forum) - I put my life on hold whilst caring for mum andn although I don't regret time spent with mum I regret the holiday abroad me and my husband put on hold. If I had the time again I would have looked for outside help sooner. Life and cancer hold no certainties - I wish you and your family well and I'm sure that there will be good days you can enjoy together.

[AlliTB]

Hi Kat, I'm so sorry to hear about your mum & now your husband, it is incredibly unfair. How is your husband? I will be sending positive thoughts & really hope he remains well & responds to treatment. My Dad is the one who cares for my mum, he is amazing & does everything for her. She is his life & soulmate & I can't best to think of what he is going through. Mum is being moved back to the hospital she was at before, they're trying to get on top of thus infection but I must admit she has ages 10 years in the last week. I cried the whole time I was with her yesterday, not very helpful! I will be more than happy just to have my mum well enough to have a chat about old times, enjoy watching the girls play, anything really. I am trying to set lower goals now & to adjust to all that has happened & is happening. I need to stay strong for my parents & girls. I hope to post something positive tomorrow. X