A big THANK YOU to all those of you who offered me so much brilliant advice on how to adjust to living with a stoma . That has proven to be the easy bit bar the pain of my innards trying to re assemble themselves . This was my fourth , major abdominal operation and innards do not like to be touched and moved about , so I am most uncomfortable .
Mac has kept you all up to date , I know ; the operation was eight hours , three teams , inevitable infections , so that in all , I was in UCH for five weeks . Brilliant nursing , but I could see so clearly , the results of austerity , the peeling back of the NHS ....complaints , constructive criticism made ..... .
The huge pelvic tumour was removed , the hernia repaired , the stoma created , all visible disease cut out , the whole in the bladder repaired ....
but unfortunaely the bladder has NOT repaired and I have come home with catheter bags , stoma , and liquid pouring from back passage , which since stoma created , has taken on a life of its own !!
Very debilitating , cannot venture out but to garden , and am a bit ofan invalid for the moment . Any day now , I have to go back into hospital for kidney drains plus other interventions being discussed . Another operation is a last resort and is off the table at the moment .
I do not have KRISSY'S wonderful sense of humour , nor the amazing advice that so many of you offer but .....
I am still here after seven and a half years of this disease .....not feeling great but yes , still here !!!
Thank you to all of you again and big hugs all round .
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angeladale
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Oh Angela, I hadnt realised you were in hospital! Must have missed updates! Glad to hear yr still here. Hope you feel better soon. Big but gentle hug. Kathy xx
Hi Angela , I am fairly new here so haven’t followed your journey but I can tell what a very brave lady you are . keep healing lovely lady and continue to defy this beast xx Julia xx
Hi Angela , so sorry to hear that your having such a rubbish time , I can’t offer any advice , but sending love and hoping that things improve for you very quickly xxxx
I have just read your profile, you have certainly been through the mill, but you are obviously a very strong lady who won't give in. I wish you well for the future, take care Pam x no
Goodness, Angela! What a time you’ve had these past few weeks. I’m so glad you are home now, and I hope being in your own environment will help with the recuperation - you don’t get any peace in hospital, do you?!
Hospital exhausting ..." obs " at 2 am ? whose idea was that ! again at 6 am .....and patients new in , at 3 am . all nightmareish xx home is great ....but I am bereft without knowing what is to happen to me ; in the hospital I had a hotline via teams in the morning and so on .....now , I have to wait for team to phone me !!!! Thank you for support xx
After 2.5 weeks as an inpatient (discharged last Tuesday), I do NOT miss the 2 am and 6 am obs! However, my body is missing them, and wakes me up at those times...can't wait for my body clock to re-set. The whole place is inhumane, yet necessary!
You are just one amazing lady... makes me wonder( and I suspect many more of us out here) how much of all these invasive procedures I could take myself before caving in . So good to hear you are coming through it though - just an incredible story, we are all very heartened and proud of you...
So tough! And it isn't always about humour, just to know a body can do this is amazing
Truck on ...and hope the various accoutrements are gradually removed from your body and you can function as a person should.
So pleased to hear you are home Angela and hope each day becomes a little easier. You are truly an inspiration, sending lots of love and positive vibes .
So good to hear you’re home. Sending you very best wishes and positive vibes that your recovery is smooth from now on. You jolly well deserve a break after going through such major surgery. Jo 🌺🌼🌸🌻🌹
Hi Angela xx well done for coping with the stoma, knew you’d do it! But that appears to be the least of you troubles right now!!
Wow you truly are going through it lovely but you’re made of stern stuff!
I too ended up being discharged after my op with a catheter and stoma, the community continence nurses and stoma nurses were amazing support and my catheter came out a few weeks later successfully so it may not be a long term thing x
Be gentle with yourself you have had major major surgery with post op problems so it will take a long time to find your mojo and start to feel anything like ok xx
Take A day at a time and hopefully your innards will stop protesting soon and settle down again xx
Oh , thank you for sharing your experiences . If it was just the stoma , i could cope ; but the catheter and , leaking is all too much . The hospital lot have all said four to six months to get anywhere near stable ! and that's without further intervention .
I am spending a lot of time on the bed , cant even read . The cat has accepted that he cannot stretch out on my tummy as was his wont . He now guards me from the far corner of our bed , We can all learn new ways , is what he is saying to me ! .
Hello Angela, I'm sorry you've been through so much. Have you tried audio books? That might help. It took my bladder about 5 months to settle down after my bowel resection and complete hysterectomy.
"All visible disease cut out." Keep repeating that!
Thank you so much Nancy , that's what I need to hear ... I feel a bit of a wimp and realising that I have to just " be " .....and I find that difficult .
It's difficult going through periods of illnesses and recovery. It's not like we had lessons in school on how to be good patients and how to take care of ourselves.
I've learned to be kind to myself and put myself first. Nothing whimpy about that.
Well you’ve done 5 weeks already sweetie and every day is another days healing done xx I know it seems like you have a mountain to climb but each little step is a step towards the summit xx
My little dog has learnt not to step over my belly too and she’s hilarious when my stoma trumps, she generally jumps up and the look on her face has me laughing!
Have plenty of cat cuddles while lying on the bed it’s the best medicine xx
Know you’ll be knackered so keep us updated when you feel up to it xx
Watch tv instead of reading it’s easier but if you start watching Jeremy Kyle we may need to intervene before you lose all semblance of sanity xxx
Oh Angela you are amazing. I’m so glad at least you can get out into your garden it must make a difference. Clever cat, eh? He’ll know his mummy is delicate and needs watching over.
Sounds a bit of a struggle for next few months but each day will be better than the previous. Five weeks in hospital will have taken its toll from your strength even without complicatios.
I am finding being housebound , tied to the lo most ghastly . To be truthful , life is so diminished at the moment i could scream . Made dinner this evening , and am now ready for bed, post anitque road show ! Michael teaching full time so once he leaves for school , I stay in bed for hours !
Hope you are doing well on the trila , that Rufus is behaving himself , and that the bees are getting sleepy !
And you made dinner, oh Angela, you’re made of steel.
It must be so hard being housebound when you’re used to being active.
I would like to say Rufus is behaving himself but nothing could be further from the truth. He’s had the big snip! The day after your op.
Trial seems to be going well, go to UCLH every Monday now. As far as I can tell the mild side-effects I have are to do with the Cisplatin / Gemcitabine (bit dizzy occasionally, slight minor vision disturbances occasionally).
Bees busily preparing for winter. Have taken off the honey and planning on bottling this week. Steroid free week so should be able to concentrate - sort of.
I do hope things settle down for you very soon. It’s so many new things to learn to cope with all at once.
Dinner was Kedgeree ! Eggs boiled while fish poached . Instant pillau rice . Curry powder and ground spices ....topped off with Covent garden , Smokedf haddock chowder .....huge skillet full , enough for six . Took me all day , sitting down between processes . Could not lift pot so David did ! XX Spent today in bed xx
Sorry to hear you’ve been in the wars - without getting too personal what is actually leaking from the rectum? Do you have a loop ileostomy or an end one? When i had my stoma I was fine at first then started passing all manner of stuff from my bottom - stoma nurse said it was a type of colitis caused by the diversion and would stop and it did despite chemo so it might not be months to stop - fingers crossed.
Hope that you eventually can get back to some semblance of normality - whatever that is with this illness x
oh , how kind of you ....someone who knows how awful this is !
Liquid , water at first but now urine ....scan re a fistula was inconclusive , but MRI last tuesday suggests that bladder hole has not repaired and that this pouring is an overflow .
However , the last few days fluid has diminished so perhaps it is all healing ? The stoma I can deal with , the catheter just , but this back passage stuff is just too much !
I am sure that evenually it will all be sorted , but at the moment I feel quite overwhelmed by it all .
I can only imagine how awful that must be - there was a lady on the menopause forum I used to read had a fistula but hers was bowel contents coming out in various places - fingers crossed things heal and repair possible - I think after chemo our bodies never heal as quickly or as well as we’d like - it does seem one indignity and challenge after another with this disease and I admire your resilience even if you currently feel overwhelmed x
Frankly Angela, it’s not a surprise that you don’t have a sense of humour. What you have been through and survived is amazing, hopefully you’ll start to feel better soon, and yes, you are still here and still fighting!
Holy (censored), that sounds like a major impact indeed. Well done for bouncing back as far as you have already.. I'm in awe, Angela.
Hm.. I hope that discharge stops soon, and your discomfort lessens over time, so you can venture out again. Is it just a question of time and finding the right meds now?
I remember standing in the grocery store and staring at those XL size Depends for ages, wondering if this was to be the end of dignity for all eternity. Turns out, it was just for a time during chemo, phew. You torment too will ease.. it just has too.
Great admiration for all you have been through. The rectal discharge must seem like the last straw at the moment but it will gradually reduce . Don’t despair. Concentrate on nourishing food & rest and a little exercise & I am hoping that you will feel stronger . Sending lots of positivity .
Angela, I cannot imagine surviving all of this with any kind of humor but you certainly have that in abundance and your vivid description of various leakage had me taking inventory of my rarely used supply of good old Depends.
This too shall pass (pun intended) and gradually, hopefully your backside will start to heal. I know it's hard to be positive when our bodies are so wounded. But obviously your soul and spirit are rising above it.
I have been very reluctant to get into my tiny garden and prepare it for winter. My Wandering Jew is starting to visit my neighbors new Mums. You mentioned you were able to garden after all this attack on your body and systems that I feel guilty enough to get out there and trim, pull, and annihilate in my little flower plot. Plus, it finally got below 90 here although you could cut the humidity with a knife.
What a horrible time you have had and are still having, I’m Impressed with your strength. Your poor battered body will recover a little every day, it just needs rest.
We all find that when we are in hospital we can’t wait to get home and when we come home we can’t wait to get out.
Where else would you find such loving, knowledgeable and encouraging support but on this forum? Delighted you're feeling well enough to come out and engage with us again because you're a shining light in this group of fellow sufferers. I for one look forward to your posts. Maybe see you at UCLH soon Gina xx
Ooh golly , Gina you have been through so much yourself ....so many of us are going through more and more interventions , more stuff availability than when I started in 2011 ....surgery , trial drugs , we are living longer , but gosh I am worn out . I am supposed to be at UCH on the 9 the October but have my doubts . Being good and spending day in bed ! XX Hope you are in upode and doing well XX
Yes mentally ok at the moment, thanks, but I've hidden my head in the sand as I can feel activity in the tumours, not good. I've been taken off Octopus trial and will await outcome of scan on 9th, in the hope I qualify for something else. It's mind boggling how much is now available for us at our later stage of OC so, bring it on, I say! You're a real inspiration. Thank you xx
Dear Angela so good to hear you are home, albeit still going through such a tough time. We all probably think we could never get through something as hard as this but take strength from the fact that YOU HAVE! And you are still here to put 2 fingers up to this bloody rubbish disease!! Agree you just have to accept it’s going to take a long time to get over the operation and getting used to the stoma. The leaking sounds extremely depressing tho and I hope something can be done sooon.
Been in hospital myself recently with bowel blockage - so much disease on outside of bowel causing narrowing and pain - 5 days was more than enough for me but it’s funny how quickly you start to get institutionalised and depend on the regular checks. Good they are phoning you anyway. Have you got community nurses coming in ?
Take great care of yourself and hope you can find some distractions. Killing Eve the drama is bonkers but held my attention, audio books can be good too.
Thank you X Because I was in for so long , the wound , glued , had healed so no community nurses . Stoma nurse has been in and she was brilliant . We have a rapid response team in the borough , and they will come if I am desperate . I am having visitors who do everything , a cleaner who waves me away , and learning to be a patient with patience ! Waiting for team to phone with a plan although I think things might be getting a bit better ! Cross fingers XX I will try audio books XX🙂
My goodness , you too have been through the wars with this wretched disease . ( Using time in bed to catch up on profiles ) . Bowel issues and more ....yet you too have got on with the living .....it is all we can do . Thank you for posting such focussed responses xx
Yes, life is reduced but it’s still life, I try as hard as possible to think of one good thing each day that I wouldn’t have experienced if I hadn’t kept going with treatments. Mainly talking or laughing with my hubby and kids who have been my motivation all the way through. Today I was listening to Rachael Bland’s last podcast - she was the radio presenter who really did a lot to normalise the conversation about cancer, who died a month ago aged 40 of breast cancer leaving a 3 year old, and that made me feel quite humble. I’m 53 which I thought was young to be in this situation but in the end each person is still dealing with it and their own circumstances, whatever their age, But I am so truly grateful I have had 22 years as a mum and seen my 2 become wonderful caring adults. Sorry waffling on! Keep strong and take it day by day xxxxx
Angela it’s so lovely to hear from you, I’m so sorry I missed about you being in hospital but it’s great you’re now home, you’ve certainly been through some rough times but I truly hope that now you’re home you can start to heal and recover steadily. I hope the issues with the results and the pain from the surgery start to lessen very speedily.
Heal well lovely lady, gentle hugs and love ❤️Xx Jane
So glad to hear you are out of hospital Angela, hope your problems sort themselves out soon. Gentle hugs, Jenny x💐
So sorry you have to go through this Angela but you have such resolve and sounds like although slowly, things are moving in the right direction. Be kind to yourself and don't look at it as a negative that you can't do much right now. Its healing time and you should be your most important focus--even if you only give yourself a few months to be so. Sending healing thoughts and hope things sort themselves out and "settle down". oxoxox
Oh Angela you have so much inspiration to share with us all, take each day as it comes build your strength up. I feel like a mouse complaining of issues I have due to 2nd line treatment.
Well at least you are home but I do remember that insecure feeling and having to think about where the next meal was coming from. However being constantly woken up when you've struggled for hours to get to sleep is well worth leaving behind. Sending healing vibes your way.
Angela, you have been through so much! You are so strong and have such incredible will. I am praying you find healing and a break from all of this. I send my love to you Angela! ❤️ Peggy xx
Wow, congratulations on getting out Angela. I cannot imagine 5 weeks in the hospital. My longest stay was 7 days. You sound like a very tough gal to be able to put up with all you are. The stoma did not turn out to be as big a deal for me as I feared. You'll get used to it fairly quickly.
Good luck,
Tom
Wow that was huge surgery so for now its very baby steps, I hope you will feel stronger every day. I hadn't realised you were in hospital either. Sending you best wishes for a good recovery, I know it will be a long process but you can do this
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No operation given
Run out of big pants
Out the other side!
Scared ......
