Are We Individuals?
Are We Individuals? Hi There Ev1
I am only here to have quite a big moan but feel at present nowhere esle to go to.
I’ve been on the site before but that was when I was first diagnosed back on Feb 13th. I should have been having a bowel resection on Feb 15th (my third) due to my Chrohns Disease.
Anyway I had my bilateral mastectomies on March 24th (Fri) was sent home following Tues. and given Iron tablets which wrecked my bowel and meant back in requiring blood transfusions. By the way had immediate recon. as due to surgery I am to undergo for bowel wanted to keep away from theatre as much as poss.
First inflation 17th April one port could be found on RHS other one couldn’t. Needle placed in & out of LHS but decided to leave it for now. Went home lop sided and sore. Chemo next day. Adriamyacin. OHad ‘normal’ sickness, tiredness etc., but on 3oth April had severe stomach pain and was admitted. Found to have 0.01 white cell count, Neutropenic and also infection(prob Chrohns) weeks barrier nursing and IV antibiotics plus GCSF injections. One minute barrier nursed, next need bed for someone who’s ‘ill’ so wheeled into what can only be described as geriatric nightmare! Hair falling out so asked if could come home. Discharged next morning. Next chemo due yesterday. No decision what should happen next. Felt like a number. What’s been happening to you then? Do I really have to keep repeating this depressing story? Still waiting for Oncologist from Clatterbridge, have treatment at Chester, to decide a0 to look at my notes & b) what’s next?
Keep being told that all concerned staff, oncologist, bowel surgeon, dietitian, gastrenerologist, breast surgeon are communicating. Somehow I am am not convinced!!!
Thanks for listening. You are all great no matter how ‘simple’ or how ‘complex’ your situation you are all individual. Why don’t we feel it?
Love & God Bless
Diane XXX
Poor you hi
I’m sorry that you have had such a dreadful time. I’m stuck for what to say as I’m so shocked. Fancy turfing you out of a side room when you were neutropaenic.
Communication is always a huge problem in big organisations. I hope something can be sorted out soon
There should be PALS (patient adocacy liaison service) at your hospital. It is probably a good idea to talk to them about what has happened to you and how you feel. They may be able to help you speed things up or at least you can have a good rant at them.
Hope things improve
kate
Hello Diane, you have really been through it! In my view there is no justification for the way in which you have been treated. You are vulnerable from two unpleasant conditions, and made additionally ill through the treatment for one. As a neutropenic patient, you should have been isolated and not in a general ward of any kind. And it doesn’t seem from your account that things are any better now.
Make a stink about this - if you can raise the energy to do so. Complain to the hospital and to your GP - who ought to be complaining on your behalf anyhow. Keep on their backs. However big the organisation, care of the patient and communication should be priorities. They may think they are communicating between themselves, but in my experience that can easily fail if paperwork is buried or a file lost, or someone is on holiday, or the office staff have an early night.
There is advice elsewhere in the forums about the ways in which complaints can be made, and with your expereince of hospitals you may already know about them. But the sooner the better. It is a truism that the person who makes the most noise tends to be the first heard.
Hi Diane… Just to let you know there is another woman on these forums who has Chron’s & BC. She’s never managed to meet anyone else who was trying to deal with both awful diseases together, and I’m sure she’d love to hear from you. I’ve met her at her lovely home in Cornwall, her BC diagnosis was about 3 yrs ago. She posts under the name lizziecee. I’m totally sure she won’t mind me posting this. If you type her user name into the search facility on this site you may find some of her postings. Otherwise, I’m sure she’ll see your posting soon.
I should just add that I’m so sorry you are having such a rough time, & I’m thinking of you.
Sarah
Are we individuals? Dimac
Like the other ladies who’ve replied I’m horrified at the level of “care” you’re receiving.
I live in Chester and know the hospital you’re referring to. Also, my brother has ulcerative colitis so you have my heartfelt sympathy over this condition.
I agree with the others…get your GP on the case or at least phone the bc nurses whom I always found were very sympathetic and helpful.
You should not be expected to cope with so much illness without extra, expert, care.
Please keep us informed about your progress.
My best wishes
Gillyf
Hi Diane,
I know only to well about the` weird and wonderful world of the mysterious bowel, as l have regretabley had 7ft of bowel removed leaving me with no large colon at all and permanent bleeding piles.
I have to say for me living with my bowel or lack of it has dominated my life l have resisted having an ileostomy [cant have a colostomy due to having no colon] and my specialist doesn’t know of anyone in my situation as most other people have a bag l just couldn’t face that having breast cancer twice is enough.
If l could help you in anyway please don’t hesitate to contact me l obviously haven’t gone into too much detail on here but believe me l know what its like to live with bowel problems and l do live with it l had my first op followed by many others 6yrs ago so my bowel and l have an uneasy truce and we both co-habitate my body.
Looking forward to hearing from you when you feel strong enough l know its easy to say but keep your chin up am sending big cyber hugs
Luv Lyn x
p.s. l also go to clatterbridge for some treatrments
Individuals ?? I have had Endriometrosis for 6 years that was up untili got bc !! The treatment is keeping it quiet !!
When I was admitted to hospital whilst on Chemo due to infection and severe blood loss I was amazed to find that the Dr’s from their own specialist departments never spoke to each other. I had been informed by the oncologist to have my coil taken out , hence blood loss then whilst admitted another dr told i needed it fitted !! He had never read all my notes and didn’t relise i had bc !! I got so fed up of being told that i had two issues that had to be dealt with but yet neither of these dr’s spoke to each other to ensure all issues were covered and possible side affects .
Idid find out that hospitals have a protocol to work to for patients on Chemo but this was after i was discharged. One of the things i found out was while neutropenic and showing signs of a high temp you should have antibiotics within 2 hrs, I waited 7 !!
We are all differant
Love to all and keep smiling
Vodkasue
BC and Crohn’s Hi Diane -
i am the other woman on here with bc and Crohn’s that Sarah mentioned. Thank you Sarah. I have had Crohn’s for some 35 years, and it doesn’t get any easier. I had a dreadful time during chemo as I had to stop taking methotrexate as my Onc said I would die of septicaemia if I continued that drug with FEc chemo . I got another Oncologist who sorted me out with daily decadron for the 6 months of chemo. I survived on Frutijuice stuff from the hospital - no solid foods.Now doing well with bc after 3 years from diagnosis but the Crohn’s is still a big problem - injecting myself weekly with methotrexate but is still not stopping the diarrhoea or the weight loss. Now down to 110 lbs and dropping. Seeing the gastro on 23 May and praying he will up my dosage.
If there is anything I can do to help, please ask.
Hugs, Liz.
Are We Individuals? - Progress Report Hi There Girls
What a fantastic bunch you all are and how bad of me to rant and run!
Just to update you all. I had a meeting with oncologist on M10th. Need B12 every 6weeks, given me steroids and follic acid and after Chemo on Thurs 11th I had to go back to Clatterbridge on 12th for GCSF injection. Was told by oncologist that had choice to carry on with chemo or not as I run risk of perferated bowel. My decision has been that if they were now keeping a better eye on me I felt I couldn’t NOT have chemo as obviously I want this Cancer kicked into to touch. The good news is that after I’d had the GCSF on the Friday I took myself off to Abersoch with my lovely daughter, partner and granddaughter (2 - 3 in Sept) stayed at my sisters wonderful sea view apartment as they were in Cuba for two weeks. We spent a week doing what we wanted to when we wanted to and I was waited on hand and foot. I ate fairly well and my bowel actually behaved itself remarkably well. The indegestion is a pain but heh compared to all the other previous this was a breeze. Managed a few walks on the beach and a couple of sits in the sunshine ( fully covered of course!!) To date I’ve had a few bad pains yesterday but they have now subsided. Next treatment next Thursday so fingers croosed may have it under some control. Sleep is still a bit annoying too. Have to say it doesn’t help though that my husband snores UNBELIEVABLY ! Flick knife anyone!?!
Thanks again for your care and concern you are all so wonderfully supportive and I wouyld love to meet up with anyone local and have a real heart to heart .
My love to you all and hoping that you’ll forgive my delay.
PS Do you think I could get a week in Abersoch on Repeat prescription too ( it would also mean not being at home with a man who doesn’t know how to cope and and never been in the real world before so this has really sent him into orbit) Do you get the drift that my life is complete and utter mess and yet whilst I was away I really found myself and I am so strong in all areas that I never imagined before. I can feel a novel coming on.
Love & God Bless
Diane XX