Just popped back from hospice for the day. Wishing I hadn’t as couldn’t believe the mess. Hubby away for weekend as annual morris minor rally - he will pay for this as poor mum has been stuck up here all week and wanted to go to her church sunday morning. Also it is the boys mess and been daugter, mum and i tidying up!!
Skin getting redder from rads and swallowing worsening but improved since been on steroids. They thnk it will get a lot worse in next week or so - really dreading it. On 20mg mst twice a day so highest dose ever been on bu feel OK so must have been the same dose I was having IV but didn’t realise it.
On 4 bedded unit and with a very hysterical unsupported woman with children ranging from toddler to adult - hard work so as usual left to us other 3 to support her, Nurses nice but have never used a drip machine before so don’t feel very confident - may do my own long line flush and change bungs as feel I maybe more confident.
Had a rather shocking ‘do you want to be resuscitated’ talk yesterday which caught me by surprise but I suppose now I have fluid around my heart and the evergrowing tumour pressing on my heart I’m in tricky waters. They hope the rads will get rid of the fluid around my heart and shrink the tumour so I can eat. A liquid diet is very boring but at the hospice it does include alcohol so that’s OK!!!
Have emailed address of hospice to you all I think if not you will have to ask the others for it!!!
Must go - lots I want to do
Trace- look after yourself please
Love Kate
Kate
Am so glad you are being looked after properly (well almost). Sounds like flushing lines etc yourself is a good idea if they not entirely sure as you dont want to get an infection on top of everything else.
I can totally understand why the talk would have taken you by suprise, but we do it at the kids hospice too everytime one of them is admitted - even if it is just for daycare or respite! So hopefully you can take some comfort in the fact it is something that has to be done rather than them just writing you off.
My mum is down in poole and bournemouth for a few days. I was meant to go with her but cos of work couldnt, such a shame as i could have came and visited.
Please dont worry about me, and cant believe that you are - you need to use all your strength and energy on you (and not hubbys clearing up)! I’ll be fine - just having a rant as usual. Compared to what you are going through it’s nothing.
Take care and perhaps when ur home we can sort out meeting up.
love to rest of GG. x
Have found I can access computer in daycare at limited times so may be able o add extra message or two between weekends!!
Having lots of visitors which is lovley but as always there seems to be one family who dominate evrything and seem to take up all the dayroom, hog the day kitchen and leave rubbish behind and don’t pay fo any of the sweets and drinks they consume and the highlight was yeserday when they started smoking outside my bay’s windows so I slammed the windows and glared at them. the nurses said it was a difficult situation and wouldn’t interfere but i thought all smoking was banned on hospital sights and you would have thought they would have had more sense than to smoke outside someone else’s window.
Now got all my tablets in liquids and having beter pureed food so at least it goes down and has a proper taste. they started me on a new antinerve pill but all it did was knock me out and I woke up this morning very stiff and painful and needed diazepam to get going - a bit of a contraindication in itself isn’t it!!!
Skin holding on but have decided to stop wearing red or perhaps I should wear red so it is camoflauged!!! Back is OK apart from where had old rads before on spine. Still a lot of pain between shoulder blade and T7.
Still organising things from school especially little un’s drinks and bowels. Twins off to pgl for weekend so will be at home friday am to suopervise packing. Don’t think I trust eanyone else but they will do it themselves I will just check it’s all gone in!!
Hope to see you soon
Kate
Hi Kate - so good to read a post from you. There is always one family who dominates and they are always the least considerate…The smoking defies belief.
So glad you can taste your pureed food…hope you are enjoying it…Sorry to hear you still have shoulder pain.
Can’t believe that you are still organising the kids…Where are the twins off to - what is PGL?
Enjoy your time at home…it will be very quiet without the twins.
Lots of love
Heather
Hey kate
I spent quite a bit of time there when i was a child. The kids are gonna love it!
xx
Hey Kate
Dont you waste time fretting re house and things, just enjoy home time, it really doesn’t matter if things aren’t packed or ironed to your standard just let them all get along learning together and getting on. I know it is hard but I remember coming home from normal BC ops and NS hospital stays and its really not worth worrying over as they just want you home and are excited to get you home. They also have to do hospital visits which eats into their house keeping hours. I remember reading hang up your party dress and how dina had to watch and accept her OH do things different, it wasnt her way but she realised it was just as beneficial for 1 on 1 time, If I remember rightly it was something to do with young sons bed time routine.
As for ignorant tossers at hospice, probably not a lot you can do so again dont waste precious energy, at my local hospital and Oxford one, they still smoke right outside buildings regardless of doors or windows, even right outside chemo suites and that includes cancer patients and no matter where you are you will always get that one family.
Hope the skin holds out and makes the eating better, love to you all, Debs, XXXXXXX
Hi all, Vikki again with an update on lynn.
Sorry this is a quick post and i haven’t managed to read whats happening with everyone else.
They finally agreed to do a CT scan of lynns torso on Monday and following that she was told to pack up her things as they were moving her urgently to Hillingdon hospital where the surgical team were waiting. As she was being loaded on the stretcher, her oncologist came and told her they think she has mets in her stomach and there are two obstruction sites in her bowel, and then left her to be wheeled away into the ambulance. When she arrived at hillingdon there was no surgical team, merely an SHO who told her the consultants would speak to her on Tues to discuss the scan results. We were clearly outraged at the way the delivery of news was handled and then the trauma of being rushed to see a surgical team who weren’t even there.
In any case, the consultant came to see her on Tues morning and was as helpful as a chocolate teapot because he hadnt even looked at the scans. We had to ask her breast care nurse to come and talk to us with someone who had read the reports and seen the scans which eventually happened yesterday afternoon. To summarise, her chemo hasnt been working and one of the tumours by her kidneys has grown and could be pressing on the bowel, also the tumour by her aorta could be pressing on nerves and causing some difficulty in her bowel, and although the scans are inconclusive, they think she has mets in her stomach. Not great news but she has a meeting with her Onc team on Thurs to discuss the options and presumably they will arrange another scan so they can be sure exactly whats going on - but with the NHS who knows. They also confirmed that the tumour they removed 2 weeks ago did not show on the scans they did in February before her chemo started, so its a bit scary how quickly that one developed and grew (maybe that is my naivity shining through).
So, they have now started her on antibiotics which induce diarrhea to try and get the bowel moving because they need to get her eating asap so they can get her started on a different chemo to sort out these nasty tumours. She is having her stomach aspirated through a tube in her nose every couple of hours and has a morphine patch and regular morphine injections for her pain. The antibiotics seem to be working a bit… there was some wind and movement lastnight (which was strangely exciting for us both!) so fingers crossed they keep working.
She’s now in Hillingdon hospital as i mentioned and has been moved off the emergency assessment ward to the Marina ward which is part of the maternity/gynae unit… she’s MUCH happier there because its cleaner and she gets her own side room with private bathroom too (at least that takes stage fright out of the equation!).
I know you all have troubles, especially Kate in the Hospice at the moment, so on behalf of Lynn and i, i’m sending our love to you all.
Vikkix
Hi Girls,
Oh my god, so much has gone on and i feel i’ve been oblivious to it all, so sorry! i do think of you all often and am feeling so sad that Kate and Lynn are so ill, lots of love to you both and please shout me if there is anything i can do.
Well RH has left! he moved out 2 weeks ago and i know its the right desicion but still finding it hard. after 18 years it all feels a bit strange. Kids appear better behaved, yet i have had to shout at them just now!
We lost a lady from our support group last week and she did’nt even know that she had secondarys! she had only just had her recon and was doing so well, then got taken ill last week and died just like that, what a shock! mind you at least she has’nt had to suffer and after hearing what you guys have been thro i know what way i wanna go!
Still finding the whole cancer thing hard at the mo and feel its to blame for lots of things. Got to make up my mind about the hysterectomy, def gotta have ovaries out so no need to keep a uterus that may give me problems in the future or whilst on Tamoxifen. Just worried about what my future holds and if that may involve someone else and i cant provide what they want, also dont want to break something that works!! (if you get what i mean??)
Anyway, i better go as i’ve got so much to do these days as i have no one else to pick up after me anymore!!
I will try and be better at this and make the effort to look everyday.
Love to you all and lots of hugs
Claire xxxxxx
Vikki thank you so much for letting us know how lynn is- poor love the bad old c isnt giving her a rest is it?
Kate hope things get better at the hospice, sounds far from ideal, and debs advice seems good, you are so used to being in charge you have to let them mess up while they realise they have to sort things out. Claire so good to hear from you, hope things get clearer…Trace take care…
Well I have had emotional few days with some friends having some tough times, so all in alll wish better luck for all of us
xxsam
I got a strange text from lyn yesterday which I didn’t understand but now I do. So shocked but same time not surprised as couldn’t understand why her bowels not working and why her pain before she went in had been so bad. What a disgusting way to treat her and pleased she is now at hospitla that seems to care even if initial meeting not helpful. Just popped in to join in secondary chat so will post more tomorrow.
Claire - so sorry about your decsions. You have to do what is right for you re the forum.
Debs - yep - just a control freak - know i must stop. had fun on sunday making smoothies and flapjack and playing.
Trace - hope you are ok. Had good aromotherapy session which has got rid of my shoulder pain
sam - sorry about all what is going on and hope to catch with you all soon. Must go as need my mst given!!!
Kate
Escaping again at daycare as ward unbearable today. Poor lady last night had uncontrolable pain but refused all analgesia and kept falling out of the bed or chair and banging her crutches on the floor so been awake since 230am!! Just to keep it interesting, my thrat has all swollen up today and am having difficulty swallowing - just as they said I would 1 week after finishing rads!! Just had some oromorph but if continues with the pain will try to get more mst. New anti nerve drug working though so pleased about that.
I know I keep writing horrible things about the hospice but have had a long chat with the nurses and social worker and hospice nurse assigned to me and feel much happier that when my time comes I will be in a single room with all my wishes so you can print it all off from my blog so yyou know what I want.
I know they are trying to help this lady but she is too confused to accept the help at present but know they are working on it and they have up to now controlled my pain well and will listen and have suggestions all the time and the quality of the food is improving and daughter has made me some fruit smoothie which is sitting in the fridge waiting for me.
Please pass my love onto Lynn Vikki - thought you’d might be overloaded so didn’t text direct.
Will try to write to lynn now I know whre she is
Kate
Thanks for update Vicky and Sammy,
still trying to get my head round it all, big hugs to Lynn, and good and about time on own room.
Kate glad you have had your chat and feeling more at ease.
Love and hugs to you all Debsxxxxxxx
My love to you Kate and also Lynn.
karen x
Hi Gang
Just popped in to see if there is any news of lynn and too see how kate’s sore bits are developing
have a good weekend our poorly gang
xxsam
on wifi in the hospice. After a few odd moments and as long as the staff don’t walk around too much, can use internet but not email for some reason!!!
Very sore - now on upped morphine and upped alcohol intake as well in my side room with a patio!!! Feels as if been kicked in chest and swallowed acid. Aromotherapy helped a lot and had peaceful afternoon and evening - no visitors but wanted it that way today.
Popped home and hubby hadn’t done as promised - no surprise and not got out rucksacks from loft so good job my tall and agile friend bought me home so she could get the bags down and carry them downstairs!! This evening he forgot he was supposed to be taking youngest to his mum’s or else an 8 yr old will be alone at home tomorrow!!! Have tried to get hubby to use notebook, white board but nothing is sinking in and he’s not sleeping which he doesn’t cope with. Any ideas? Trying to escape but keep getting sucked in. I’ve put my foot down and told them to communicate better and run off with the laptop!!!
Let’s hope things improve all round.
Got sister coming and taking young un to barbers to achieve a hairstyle which is surferish but suitable for an 8 yr old at school!! Last week after an alien party - I thought I’d discovered one in my house!!
Being nagged about sleeping tablets now
Kate
Kate you are a star.
What about tatoo’s for your oh? like that film memento?
xxsam
Having had several nights of not sleeping well, I did last night so feel better for it. Unfortunately as the pain increased over the weekend so did the morphine so gone back to being constipated again. Still enjoying my sherry and baby food out on the patio.
Having a paperwork day - shpuld have done this before but we kept delaying it so it must be done now.
Pain fine as long as don’t even move a pillow!!!
love to you all
Kate
Hi, Lynn has asked me to update everyone again now we have a clearer picture of what is going on.
She has cancer cells running riot along the outside of her bowel. As far as I can gather, they are slowly matting the bowel down and pressing on it which is why it’s struggling to work. We have spoken to the surgical reg who says operating is not an option because they fear if they opened her up they would find that there is no way of moving the bowel to get to the bits that are causing the obstructions, and as soon as they removed one, another would take over. Additionally, the recovery period would be about 6 weeks and at this stage, they wouldn’t take that kind of time away from her.
She is still in the maternity unit for now but they hope to move her to the Michael Sobell Palliative Care Centre at Mount Vernon on Thursday. The dietician has been and gone through what easily digestible foods Lynn can start eating. The list is longer and fuller than we both expected which is good, and is basically the opposite of a healthy diet! She managed some cottage pie and soup yesterday – apart from some small pieces of fruit, that’s the first time she has tried eating properly since she left the Queens Square hospital 3 weeks ago. It’s a tiny relief to know she’s trying to eat because psychologically that was a big step for her and treatment wise, if she can keep it up, it keeps her options as open as they can be.
As always if anyone wants to know any more, just get in touch.
Vikkix
Vikki - thanks for update. As I said in my txts do please feel free to phone my mobile. It would be good to talk and I’m fine as long as it doesn’t involve sitting in a car or even moving a pillow. The mobile and laptop are my best friends at the moment!!! Actually, morphine and alocohol are lovely but no sustitute for seeing friends and family.
My diet is opposite of unhealthy but easily digestible so managing to keep weight on now. It was important for me to start eating again and for the kids to see me eat without being sick. Even ig this rads just has improved the pain in my back and shoulder and chest which it has, I now know I can live off anything pureed so not very sociable but important to me that my daughter doesn’t think I have bulaemia as effectivey that was what was happening. Eat food then be sick.
Lynn - will get excellent care in the palliative care unit I’m sure and the whole attitude of the hospice here has been so much better and nothing is too much trouble. They are brilliant at symptom control and will try to get anything to make it better for you. I’m sorry this has all happened so quickly and I’m not usre my letter to ou helped. I was a bit high on morphine and dex to concentrate properly but I’m here hun anytime you need to talk or for Vikki or anyone. It helps to know we are all in the same place really but I’ve had time to get used to this notion whlst you haven’t.
Must go as off to all to get all those things you despise like Reiki and aromotherapy but must get toenails done. The surgery doen’t look that great from january now and is stupidly painful for what it is.
Love to you all and hope to get back on line later.
Kate
Hi there Kate
I’d just like to say that I don’t post on here, I have followed your story the past few months and you are AMAZING.
I don’t know how old you are, when your diagnosis was, what it was etc etc but you are an inspiration to us all. I’m just starting this journey and feeling sorry for myself ( on behalf on my children and grandchildren).
Until recently I always had the grandchildren every week-end (all 8 of them) but am feeling sorry for myself. You’re always doing something for your children & giving them memories. ( I keep saying to my husband that I want the grankids to have memories of me)
I wish you so much luck to ease this,
Mal x