Am I overcome's worst correspondent ? I hope not but I do know I slip out of the loop .
It's been a bad year ....along with so many of us , I seem to have been in hospital most of the year , twelve weeks in all !!
As you know , eight hour operation to remove pelvic mass went well although difficult op . the stoma part has been a breeze ( and again , thank you to all those who offered support and advice . ) The complications however have been ghastly .
The torn bladder did not repair itself in the time expected and this resulted in Kidney drains as well as catheter , as well as Stoma ....Bag lady doesn't come into it ! !!!
So , I came home with strict instructions to do little , let the bladder dry out , and all will be well .
Again , that didnt happen , the catheter was filling and the kidney bags gave up on me . I have just spent more time in hospital having drains replaced and at long last the kidney bags are filling up and the catheter bag is seriously empty .
I was sent home yesterday on mega anti biotics for urine infection but have had awful reaction to them and have been advised to not take them and to either go to A and E if i get worse , or emergency appointment with GP tomorrow .
It's Saturday tomorrow !! long suffering husband will go and hammer on door , for Surgery open but dont take calls . Bacteria needs to be scotched because in a fortnight an operation to review stents and possibly replace them . ( under a general again )
Never ending , relentless , virtually housebound because of all the bags and pain pain pain .....Yet , I remain positive , wearing voluminous nightdresses as day wear with scarves and beads ; my brother observed today that I look like an eccentric potter ! But in a good way !
The year has gone by without my noticing the changing seasons ; I cannot believe it is winter with clocks going back ....at least I can try and get through the next few months hibernating . If the bladder does ot repair itself , I have been promised another operation in the New Year which will involve another catheter , more drains .....difficult to stay jolly . But , as I always say , it's not over till it's over ....
I see Prof November 6th all being well and presumably we will talk about the next drug / or maintenance regime / or , nothing at all !!
There we are , I have caught up .... for all of you , big hugs , keep trucking , settle down for winter , make soups .
Angela Dale xx
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So sorry to read what a truly rotten time you've been having, Angela. I really admire your determination and hope things will go better for you soon. I hope you can find some day clothes to cheer yourself up - or at least buy some more nighties to tone with your scarves and beads. Are you able to maybe shop online?
Wishing you well and sending love and a big hug. Hope your pain can be sorted out really soon, Solange 😊
Funnily enough , just received Land's End nighties reduced in the sale ! Wearing them as dresses , heavy cotton , they wash beautifully and recommend them . Also indulged in Debenhams demise by buying more night attire on line !! fabulous stuff and again , with cardies, scarves and beads , I have put usual winter stuff away as cannot get anything on !
Spent half my life as an actress , other half as teacher of English , but went to Art school before drama school and made pots from the time I was about 7 ! Never did as an adult . Hence my brother's observation .
Awww Angela, I knew you had been having a hard time, just not how hard. Thank you for updating us . Your posivity shines through your post. I hope your meeting on 6th goes well, do let us know how you get on. Big hug Kathy xx
Was just wondering how you were getting on so lovely to hear from you despite the circumstances - everything crossed that the bladder gets the memo about healing soon and thaf the Prof has a plan up his sleeve just for you - your resilience and determination amazing so you deserve a break from it all xx
Mother 97 , Dad died at 85 from an Infection ( otherwise healthy ! ) so I think the resilience is genetic . Maybe ? Who knows ? The hospital lot are always amazed at how solid I am !! Charming ....A size 12/ 14 but shoulders like a boxer ( Dad's ) , so look bigger dammit xx
Aw Angela, it’s always so nice to hear from you. I’m so sorry you’re having such a rotten time but your humour shines through your post as always. I hope your meeting on the sixth goes well and also that in the interim they are able to sort the issues out speedily and successfully. It’s time that you got some better news. Hibernation sounds like a plan, keep warm and safe. Hugs and love ❤️Xx Jane
Hibernation really is my plan ....I get up about 11 , Michael home from school by 4 , so by the time he's back and I have done some chores , reading , watched the news etc , why go out ?
Oh Angela you do well to post at all! You’ve been through and still going through the worst things poss and still have your sense of humour! You’re one tough warrior. Stay strong and keep hope going, somehow, and I really hope this current prob resolves ASAP.
Am in hosp atm as you may have seen and been through it a bit but when start getting down think of your shining example in never giving up.
Being in hospital is ghastly , not just the poorly bit . You don't sleep , the days vanish in being prodded and poked , other people's visitors who are noisy and stay too long ....but for me , it is being under three teams and trying to hold it all together .
I too had a catheter for a while and a stoma after my initial debunking and clothes choice was difficult! I therefore resorted to maternity clothes for a time and to be fair they really didn’t look too bad xx Asda have them online and deliver if you take a look x
I truly hope your bladder repairs itself and starts behaving and maybe you can get rid of at least one bag soon!
Ooooo homemade soup sounds yum at the moment I think I may need to make some x
Bev . Thank you for all your wonderful support and advice . I don't post a lot , don't want to frighten others really . But , Yes , I am looking at Asda website now !!
You’re doing well to post anything Angela! And good luck with the clothes search xxx
Hugs
Bev x
Oh Angela, you’ve certainly been through the mill. Sending a virtual hug 🤗 and hope that things improve soon, hang on to your positivity and that lovely sense of humour.
Re:- soup, got my chicken bones in the pot as I write🥘. Love making home made soups! Take care, Jenny x 💐
Yes , chicken soup at the ready . Bought Wonky Veg box online from Morrisons and have peeler at the ready , sitting down to do it all . The only way is Hot !
So sorry to hear of your suffering--being in Hospital alone is probably a bit of suffering too but 12 weeks sounds like quite enough. Glad to read you are home, glad to read your partner in crime will be knocking at Doc's door Saturday for you and hoping your bladder decides with its seriously emptiness that it can now repair itself! If not, at least there is another plan in place. Thank you for posting and please do again when you can. Rooting for you Angela! oxox Judy
Judy , thank you so much for support . Marvelous GP printed off Lab report , came up with another anti biotic for four different strains of bacteria which I am harbouring , probably " imported " via original operation or drains .... partner in crime went straight to pharmacy , filled car up for son , gone shopping ....he's had a rotten half term with me in hospital again , and never complains , even though he has been seriously ill himself .
I am very lucky in all sorts of ways , it's all luck in the end ?
All advice taken . GP came up with another antbiotic , I seem to live on them and the pain relief . Slepping ( lack of ) is the most pressing problem , cannot get comfy with all the bags and tubes . I am ghostly pale having not been outside for most of the summer .....But I am not Mimi yet !!!
Well, looking pale can be an interesting look, so says someone who goes on a summer holiday and comes back only marginally tanned.
Bees doubtless went into a Winter cluster last night as we had a frost here but they are flying in the sunshine now. Using up their food stores doubtless as there's plenty of pollen still around from the ivy but I don't suppose much nectar.
It's a shame you cannot get comfortable to sleep with the bags, I wonder if anyone has any tips. It must be much harder to cope with than the steroid induced lack of sleep.
I'm sure your beads, scarves and nightdresses are colour co-ordinated. Hope you still have the look at clinic!
Great to hear from you and sorry you are having such a rotten time. It is a national shame that you cannot visit your GP at the weekend- but as full time for a GP is 4 days per week it is not surprising. Fingers crossed that you don't have to go into hospital again though iv antibiotics might do the trick more quickly?
You are one of the number one posters with your witty posts making little if the traumas you have gone through. I have not contributed as I used to despite not going through the same ordeal. I tend to hide away and lick my wounds when this disease rears it’s ugly head again. You have now prompted me to at least catch up over the weekend !
In the meantime I stand in awe of your fighting spirit. I don’t think I would ever be so brave and then to write such humorous post tops it all. Well done girl ! You are definitely the bench mark I must aim for. I wish you all the best for your meeting with the Prof being a successful one. Take care
Thank you so much ; I thinkIam positive because I cannot see the point of being too despairing ... as in , " laugh and the world laughs with you , cry and you cry alone ! "
I do get into a state but I try to do it in hospital where staff seem to cope better than my family and friends ....I have holsters on each thigh with a kidney bag in each , a catheter strapped to my leg . and a stoma bag living life independently !!!
I look a joke ...but what can I do ? or any one of us on a rotten path ?
Sorry to hear what you’ve been going through.I had terrible year in 2005 when I had recurrence which ended up with Stoma being formed after the indignity of several months of bizarre laser treatment up my rectum and large incontinence pads.Then in 2007 I lost my bladder to another recurrence so I am a two bag lady.In the last year I have had endless painful bowel blockages and trips to the hospital.Suffering this weekend with pain and explosive Stoma bags which means no sleep and no outings.Thankfully I enjoy Strictly so that should help me relax.Good luck with your treatment.
Oh goodness , thank you for sharing your history and the misery of it all ....and yet , you too have survived and are surving . I am so full of awe for you . It is all awful but there are no real choices are there ?
Your positive attitude is truly inspiring! I really hope that your bladder repairs itself, your pain is well controlled, and you have a good meeting on Nov 6. All the best 😊💕 xx Gina
Agree your positive attitude is really inspiring, I’m glad to read your updates and thinking of you, wishing you could somehow sleep as that makes everything better. Love Nicola
ooh , thank you ; it is the lack of sleep that really gets to me . The horrid anti biotics wouldn't allow me to take my sleeping pill , but tonight , YEH ! a double dose . Why not ?
Thank you x I will try to keep going , but sometimes it is so hard .
Best wishes to you , too x
Lovely to hear from you but not so lovely to hear you have had a ghastly time. I do hope things improve for you and that the antibiotic saga will be sorted. Sending you kind thoughts and hugs
Hi Angela - so good to hear an update, just sorry you have had such a wretched time. I hope the antibiotics kick in so you can have a reprieve. I say stay with the "bohemian" look - add some more beads as armor - you are wonder woman. Hibernation is healing. Valerie xx
Like a catheter ( which i have ) but a drain from each kidney to a bag . The idea is that urine will flow into each bag , the residue into the catheter , and the bladder as dry as possible so that the torn bladder can heal . So far , this has not been the case . I live in hope however , or it will mean another op in the New Year to repair the bladder under a general ....I am eating lots of protein , on instruction , to help mend tissues .
Healing thoughts and hugs also help , so thank you xx
Ah, understand. Thank you for the explanation. Can only hope the bladder will heal soon. But no matter how many bags, the 'potter' look is absolutely fab! Hugs. Maus
Oh my goodness Angela what a gutsy lady you are. Hope you're on the turnaround for an improvement soon. Love and admiration winging their way to you. Sandra xx
Oh Angela you poor darling. What a terrible time you’ve been living through. I’d love to say things will get better so I will pray with all my might that things will at some point turn a corner for you. God bless and keep in touch. Xxxxx
Thank you so much for your thoughts . It is all horrible but I am not ready to give in yet !
I’m very behind with everyone’s news, but am so pleased to hear the nephrostomy tubes are finally doing what they’re supposed to.
The thing about hospital stays is you often go in feeling fine, as I did in September, and come out feeling ill and needing a regime like Maus had!
I had my tubes out on Monday last, after testing whether stents were working. ( I understand stents are a bit of a breeding ground for bugs) Chemo was postponed to give me time to recover and so I could have 2 units of blood. Quite why this couldn’t have been done when I was an in patient, resulting in me not feeling quite so floppy when discharged is beyond me. I certainly do not feel as “battle ready” as I would like, but I’ll be pleased to get started. And hope to see you on the 6th.
So sorry to read of your troubles, Mac. I do hope all goes well from now on. Glad your two units of blood helped. I'd had single units which didn't make a lot of difference before but the two units I had after finishing Chemo really made a difference. Best wishes, Solange 😊Xx
So kind of you to notice, Solange. I'm feeling much more like myself and so pleased finally to have started the new regime. Day 3 of Rotterdam and so far, so good. I agree single units don't do the job. I had one of those August/September and felt at the time it was mean and wouldn't do the trick and it didn't. Of course this is another area where there are statistics and individuals. My hGb is at the lower end always and I feel the need to blood before it gets to the trigger point for giving it. I understand others can go below and feel fine. I'n going to be updating my profile rather than writing a post about my latest doings.
What about you? You've been having a pretty tough time of it. I bet you're wishing you'd got plans for the Algarve.
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All clear !!!!!
Looking forward to a hospital heavy week
Feeling Positive again
Hi! I need help with alternative treatments for my mother who has done chemotherapy and radiation already.
