Lieomyosarcoma - tips for living with cancer please

Hi

I am new to forums. I was diagnosed with lieomyosarcoma  4 years ago, and had one of my adreanl glands removed. That was normal but they found the tumour on my Inferior Vena Cava. It is incurable and has now spread to my liver and back, most of the time I can be positive but it is waiting for the scan results and the feeling of dread. .I will be having chemotherapy permenantley  and liver ablations until they no longer works. Does any one have some simple coping strategies? I have a good support system with my family but sometimes outsdie support helps much better.

  • Hi Lyn i hate to say it, tried blue badge, told not ill enough (i thought that was very good)

    C.n.s i saw nurse when first diagnosed she explained few details. No phone no. And that was it probably a mix up somewhere. I am trying to get something sorted properly so i can have a shower, (just been having strip washes) if I'm in shower i couldn't here if bren called if she needed anything,. Neighbour comes round now and again so i can but it wants doing properly it's not fair on a very good neighbour.

    I think main problem is with me looking after bren people think we manage OK and that's it.. We do manage so not much to say. 

    We do have a care plan in place incase anything happens to me (emergency number and what needs doing) but I'm worried someone would say she needs to go into a home and she wouldn't like it plus they wouldn't look after her 24/7..

    It's good to talk to someone who understands thank you........ Billy xx 

  • Morning Lyn, as you've probably noticed I'm always up about 6.00 in the morning, habit i can't break from working. Doesn't bother me. Means i get things ready for when bren wakes up and tidy before carer's come..

     had a good night last night if bren sleeps so do i. Definitely have to vacuum and dust this weekend. Did all the clothes washing yesterday so just bedding now.

    I try to keep myself doing something but have to work round weather bren is awake or asleep so sometimes it doesn't work out. 

    Bren usto sleep upstairs we got a through the floor lift made it easy to go up and down, but everyone kept saying bring her downstairs so i tried it cleared the dining room out as much as possible all went into other bedroom really packed it out. That lift was really handy for that. Bren doesn't like being down but haven't energy to move everything about again not yet anyway plus we would need another hoist up stairs.. Sorry I'm rambling a bit just nice to talk to someone get it out of my system sorry if its boring to you. I'm sat here over thinking things. Plenty to do but not the time or energy to get it done.

    Hope you have a good weekend,and weather keeps going for some gardening we usto have loads of crocuses all over our garden birds usto eat them all gone now. Sorry rambling again. Better sign off. 

    Best wishes.... Love.... Billy xxx

    P.s why cabbages 

  • Morning Billy

    Hahaha Cabbages yes I mucked up my username and then couldn't work out how to change it, chemo brain I'm afraid.

    Did the oneline shopping and not impressed with Asda at all, no fresh fruit and veg and they  don't tell you until too late, and their substitutes are rubbish so poor old Chris has shot down to Sainsbury's to see if he can get any frmo the there fingers crossed, I really can't do without the frexh Pranges and Bananas.

    Managed to get the upstaris all done yesterday and knackered myself, but that is done, and this morning I have down downstairs and knackered myself again, but try to do what i can to help Chris. Chemo and Dexamthasone make my feet and legs swell so now they will be up most of the day again, but it will go eventually. As it is still warm have got the windows and dorrs open to get some nice fresh air through, I hate it when it is too cold to do that, and i got bough tup with no heating etc except one open fire, how would people survive if they had to do that, I can remember making patterns on the frost inside the bedroom windows. Shows just how old I am doesn't it?

    Been out and had a look at the garden but so much needs *** and no energy at the moent now, 'cso I used it all up. But the bird feerders ned filling again, so they will get done later on. We have 4 nest boxes 2 for the Robins and 2 for anything that can get in there, Robins already looking and Blue-*** investigating the otheres so hoping for babies again this year. Always do the Big Garden Bird Watch and Butterfly watch so I can say i am not time wasting but part of research, my excuse and I 'm sticking to it.

    I am glad you got a good night's sleep that alwasy seems ot help especially if the sun is out when you wake up, we now have rain and clouds again at the moment. So had better go and close the windows.

    Please take care and just enjoy looking at the garden for a bit.

    Love 

    Lyn

    xx

     

     

  • Hi Lyn be careful with your bird feeders we had quite a few different sizes and shapes for over 20 years loved to watch them then the rats came eating seeds and everything and chasing birds away all through the day as well. Still got bird boxes still watch for the young.

    On the boxes i was very crafty i put a transparent top in a small area so some light got in and got some of those lenses you put through the door to see who's there, in side or back of the box so i can watch young, parents didn't mind either. 

    We only got central heating this year never wanted it till bren started feeling cold. If your wondering brens 83 im 69  bren took some persuading before she'd marry me but we've been together over 4 7 years so haven't done bad. Only way bren would marry was if i promised to look after her when she got old which is exactly what I'm doing. Now. Sun out here so gonna kill some weeds... 

    Billy xx 

     

  • Morning Billy

    How are you both? Yesterday was my sleepy cold day, today it is just a cold day, but that should pass by Wednesday this week..

    At least we have some nice sunshine at the moment, so a nice line of washing out. 
    Have had 5 Red Kites cycling over a neighbours garden, they sound so stupid, given their size and thier pathetic screech. The neighbours have chickens, but nothing swooped on them.....yet.

    We did a lot of research ofeeders  and found some things that look like upside down bowls if that makes any sense at all and that does seem to stop the rats and squirrels and that does seem to work, we have Field mice but as long as they stay at the top end of the garden we don't mind. I also have feeders by the front room window so I can sit and watch them with my coffee.

    How will the coronavirus affect you? As I'm only 6 days post chemo have banned our kids from coming over, our son works in London and his offices have now closed for at least two weeks, my daughter-in-law works from home but my daughter and her husabnd have ot go into twork and theyhave two children of school age. Chris did have a few problems with the shopping at the weekend, but have got what we need and not too much of it.

    Chris is 66 this year and I shall be 65, we met at school but took over 15 years to find each other again, and now been married 37 this year.

    Oh just a thought, my nurses head I'm afraid, with all the handwashing wea re doing, I hope you are both using handcream to, my hands are starting ot get rough, and we were always told at work, 3 hand sanitisers, or 3 handwashes then handcream, otherwise you open your hands up to other bugs it fhtey get too rough, but I am sure you have already thought of that.

    Please take care and enjoy the sunshine.

    Stay in touch.

    Love 

    Lyn

    xx

  • Hi Lyn think we are OK now just been getting rid of a cold... I've got to be careful useless immune system. And drug myself up to get rid.

    I've heard about those upside down bowls. But tried eight foot of the ground on a clothes line one climbed along the line another actually jumped up to it that's when i decided it would have to go didn't like I'd but didn't like the rats around. With the dog, birds had gone anyway.

    Had no trouble shopping here. 

    Bren doesn't use her hands much (arthritis) but i still wash and cream to be on the safe side.. I've never had any trouble with hands cracking, probably with carrying metal around all day or wearing rough heat proof gloves.. Always use alcoholic gel to clean when I've touched anything anyway.. Yes definitely keep in touch please

    Billy

    P.s sorry forgot to ask are you having any side effects with cemo. 

  • Morning Billy

    How are you both?

    They grot I get from the chemo is the tiredness, and the feeling extra cold and that is a really strange feling, face goes all cold, but usually only lasts a week,then ok again adn this chemo gives you very achy joints a dn b ones for a bit to..

    Have been out and done a load of deadheading and will plant some carrot and parsnip seeds later on while the sun is out.

    Chris managed to get a good shop done to and i have finally managed ot get an online delivery for the 29th March which is fine. We are also vey lucky that one of our friends who lives over the road from us works in Sainsburys so she has said she will get us odd bits and pieces. 

    Given what the government has said poeple like us all have to go into lockdown from the weekend for twleve weeks, not sure how that is going to work. Specsavers were lovely this morning as I rang to cancel my appointment on Monday and got old you shouldn't be coming here anyway, we will send your new glasses to you and any problems we will try to sort out over the phone with you. So there are some nice popele out there we just have to find them.

    Please take care and stay safe.

    Love

    Lyn

    xxxx

  • Hi Lyn were fine thanks. Yes getting out in the garden is good fresh air as well As peaceful. 

    I'm still doing my own weekly shop not much choice really plus i know where things i want are so it's in and out quick. I'm keeping my eyes out for anyone coughing and spluttering.. 

    Hope cemo side effects don't last long, if your feeling cold mind you don't get one. I know aches and pains are a nucience.. My hands started to shake and still do. A definite nucience if your trying to do something carefully. 

    Talk later 

    Love... Billy xxx 

  • Hello Billy

    How are you both?
    My nephew and his family have all had to self isolate but my children and there families are ok at the moment. Shopping in certain places seems to be a bit easier, but there are still things not availabe. Thank heavens for freezers, when we can get some decent fresh vegetables we have bought enough so I can freeze some,  no not over buying but making sure Chris doesn't have to keep going out for some.The trouble I think is the younger generation not knowing how to freeze or bulk cook and then I'm afraid will end up throwing a lot of stuff away. I do need my fresh veggies and fruit. We have just finished all the potatoes and onions we grew last year. My sister and I were lucky when we were kids as mum taught us how to cook from scratch, freeze and bottle, but the weather last year just didn't give us the veggies we usually get, but have a cupboard full of homemade jam. So this year will be the same again grow, eat, but freeze some as well hopefully.

    The coldness I get from the chemo is very odd, it just creeps up from my chin and makes the whole of my face cold a very unnerving feeling, but discussed it with my lot at the hospital and it is a side effect.

    Looking forward to a bit of decent weather over the weekend so I can get out in the garden, the wind and rain last night took all my tete a tete over and flattened them and a lot of them needed deadheading anyway.

    Take care and stay safe.

    Love

    Lyn xx

  • Hi Lyn i tried growing fresh veg once dug careful put seeds in as soon as it started about ground slugs everywhere and birds tried covering tried all sorts finish up with hardly anything so wasn't worth it. Glad your getting plenty. Like you said hopefully this weekend will be good get some weeds up try to keep it tidy. Parents now don't teach the old ways anymore.

    Keep going and keep positive. 

    Love Billy xxx