[tomParticipant]

Its been a few days My Friend and I am just popping in here to see if they sorted you out? Take Care and get better soon

Tom "Onwards and upwards" x

[ElizellenParticipant]

Like the others I am hoping that no news is good news, Dai, and that you are either snugly tucked up in bed, with the nursing staff sorting out your latest infection or back home recuperating..

Love
Eliz
XX
X

[DaiCroParticipant]

Hello All,

Thank you very much, its so good to see so many supportive messages.:-D

I had a very nasty and messy week and ended up inside on Friday morning. I managed the DayCase on Tuesday but felt terrible all day… I was bled etc., and the Doctor came to see me when the results came back and said it had been decided to refer me to the Gastro-Intestinal Unit… but in the meantime it was back on the Flagyl with a two week supply to last me until I was seen.8-)

The next day I had a call from the DayCase Doctor who had been excellent asking me to come in the next day to check on my potassium levels which were a bit low and to confirm my C-Diff… a bug that we all have in our intestines but can get inflamed and infected usually by either chemotherapy or anti-biotics. :-0

I went to reception where the receptionist dealt with me straight away by taking me to a small isolation room and left me with 'the Doctor will be with you soon'… which meant 1.5 hours… while in the meantime my imagination was running riot by what they had found that meant instant isolation. It turned out that patients with C-Diff are automatically isolated… for while it is not contagious in itself the spores from motions can be picked up by vulnerable people.:-P

I went in feeling terrible but gradually improved during the day.. so the Doctor reluctantly let me home, which I was all for… but bad idea because I had the worst evening and night of my life and ended up interred next afternoon… by which time I had nothing left to give up or down.:'-(

Luckily, wet lettuce as I was, I started to improve. Several failed attempts at inserting a cannula left my left arm and the back of my hand battered and bruised at which the intern said he only wanted it in to give me fluids and left me with instructions to drink plenty and left me with four separate cotton wool and tape plasters covering some brahmas of bruises.:-S

My DayCase Doctor came to see me early Saturday am and said that I was to have no bloods taken that day and if I was the same or better by Sunday am I could go home… the Flagyl had kicked in and I was improving significantly. I had eaten and drank very little on Friday but Saturday saw and improvement if not my temper. I had written out a full medication list for the induction intern but he had only signed for one day only… and had left off three medications. I had taken in enough for Friday and Saturday am and an extra strip of MST and my Revlimid. Suffice to say that on Friday evening there was a battle for each tablet (literally) and because they don't deal with MST I had to wait for a Doctor to sign off for their equivalent. My Pyridoxine and Gabapentin were not even on their list which meant a Registrar had to prescribe but there was only one on duty from a small pool of Doctors post 6pm so there was a problem.

Luckily I had not handed over my stash by then so I took what I needed on my own volition. I thought that everything would be sorted the next day but naive me. They confiscated my stash and Saturday was as bad as Friday, with medication coming in dribs and drabs all day and mainly on demand by me. At eight thirty on Saturday I received a couple of tablets and asked about my Revlimid… they had a strip provided by me behind the desk but their medicine chart, made up by the intern, said Friday only. This mark you on a specialist haematology only ward… I supplied them with a second medication list with strengths, times etc., and asked for a Doctor to sign them off… especially my Revlimid. I was told at eight-forty five that the Doctors pool had the list and would ensure my Revlimid was ratified as soon as possible. I enquired on the half-hour every half hour and was told 'soon'… I received my Revlimid at 2.30am.:'-(

I could have done without the hassle as I tried to recover but something tells me that that same hassle vitalised me… oh, and it was my DexDay too.:-D

Anyway, things are picking up now… I was told my medication was down from pharmacy at 10:30am and to ring Janet to come and get me. She arrived at 11:30 and of course I was finally released at 3:30pm.;-)

But I'm home… feeling very weak with a HGB of 8.1 and my neutro's down to 1.5 but I am sure they will pick up over the next few days with a follow up on Thursday am.:-)

Home is good.8-)

Thank you for your support and allowing my little rant.:-)

Dai.

[HelenParticipant]

(with heavy irony tone) Phew Dai it's good to know that they can sort out the minor stuff so efficiently………..

hope you are mending now, what will they do about the Hb level do you know yet?
Love Helen

[DaiCroParticipant]

Hi Helen…

We will see on Thursday… I could have gone in on Tuesday or Wednesday but I chose recovery at home… where I am sure all bloods will pick up on their own.:-)

Dai.

[mhnevillParticipant]

Hi Dai

Do hope, that at last, you are really beginning to feel you are winning. I am so sorry that you have been fighting the staff as well as the condition. Why does it have to be so difficult. I often think we would be better organinsing our own meds!!

Best wishes and all my love.

Mavis x

[tomParticipant]

Well Dai And Janet

What a roller coaster you two have been on.

Am sure you can do "Battle" with them Dai and win (mental note nevet to let them know about my stash lol)

I remember being in Castle Hill during SCT days and I had to remind them to throw me the odd Anti Sck pills my way, I asked if they could not put them in my lock up and I could see to them Lord they nearly shot me me Lol.

Pleased your on the mend now dai, keep strong and fit.

Love to you Both

Tom "Onwards and Upwards" xx

[DaiCroParticipant]

Thank you Mavis and you too Tom,:-)

I have decided to write to the ward manager of the ward. Usually I would put my experience down to weekend/bank holiday staffing and let it go but this is a purpose built ward for haematology with, I was assured, normal staffing… so I should expect better.:-(

I was admitted as a 'C-Diff' Isolation' patient with strict criteria to be followed. When we arrived we were told the room was not quite ready so we were shown into the day room to wait. It is a very nice room but small and narrow and there was a couple already in situ. I questioned whether we should share the room but the nurse said it would be okay because we were both waiting for rooms and it wouldn't take long. The male patient and his wife looked nervous and I tried to reassure them that my infection was only contagious from diarrhoea 'spores' and not from general contact such as breathing… they looked a little mollified but he was a lymphoma patient in for chemotherapy and his first ever stay in a hospital… I felt for them. After half an hour the nurse came for me and I was wheeled (wheelchair – I was to weak to walk) by Janet to the room and put into a chair. The bed was not made, all the bins were full and the floor had not been washed… it couldn't have been less ready… and this an isolation room. The intern came in and took my meds history which I filled in giving all strengths, times etc., of every medication and he was very pleased. Of course, as stated earlier he then made a dogs dinner of making up my meds sheet, missing three main meds and getting others wrong in terms of times and days.:-(

The nurse came in and made the bed after an hour's wait but at least I could get into bed. Janet left then because she had some shopping to do before going home. The cleaner arrived but he only wiped a few surfaces and washed the floor leaving the bins in the bathroom full to overflowing. They stayed that way until the morning.:-(

So with that and the meds fiasco I have decided to write and inform of my experience. There are procedures that should have been followed that were blatantly ignored and the bottom line is that it just wasn't good enough by far.:-0

Dai.

[MinParticipant]

Hi Dai,
Happy days. I seem to recall that when Peter was admitted as an emergency!! He had similar experiences.
What would they have done if you were incapable of giving them all the meds you were on? Worrying.
Thank goodness you survived the poor quality care. Makes you wonder if you should have stayed at home and called out someone.
Trouble is its such a fine line you walk down, and the advise from the consultants and specialist nurses presumes that the people dealing with emergencies are up to speed.
Tip for next time. Make/print out a medication sheet and times of drugs etc. apply double sided sticky tape and when admitted stick it on the sheet they ask you to sign on admission. It would make far more sense if they asked you to fill in the form for meds instead of trying to get it right!
Hopefully now your home you will pick up. Revlamid used to give Peter dreadful trots. And he countered it with Imodium syrup.(Only available on prescription) Far better than pills and faster working too. You can take a teaspoon full or two or a lick of the bottle lid depending on how bad it is!
Keep you spirits up and give them hell when needed. Might just save some other poor b**** going thru the same coc*ups/proceedures.
Enjoy whats left of the bank holiday.
Min

[EvaParticipant]

Dear Dai,
I'm so sorry you've been through this. I think that most patients are too overwhelmed to say anything.
Similar things have happened to me in Edinburgh after transplant and at Raigmore( Inverness) after my arm broke. However I did also experience some fine care as well. Sometimes I wonder whether there is confusion about who is responsible for what. It is only when we notify the hospital about what happened that there's a chance of them confronting the problem. I'm ashamed to say that after my arm shattered and I spent nine days in a ward in the hospital at at Inverness, I did not report some things I saw that were really really off. Instead, it felt as if I was imploding and I asked to see a psychiatric nurse and felt very low. I had lost my fighting spirit; I hope that in the future I will be braver.
Dai, I hope your symptoms diminish and that you respond to the Rev.
Best,
Eva

[mhnevillParticipant]

Dear Dai

I'm glad you have the emotional energy to take up your complaint this time. So many of us let it go because we can't face the effort needed.

I think some of the weakness inb the system, which allows things to be so dirty, is the division between nursing and cleaning staff, and the division between cleaning staff and staff who collect rubbish. I used to get really frustrated as my ward never seemed really clean and tidy. I think some of the reason I didn't complain, is that the nursing staff were so willing to help me in other ways.

I also think the whole question of medications needs a thorough overall. It sounds as if many hospitals have the same problem. I went three days without my blood pressure tablet because it wasn't "written up"! When I reported it to the Staff Nurse, she said it didn't really matter!!! I wondered why I was on it then! Having said all this, this last time I was in hospital was the best I experienced for getting pain relief when I asked for it.

Oh Dai, I do hope things are improving for you. I keep sending you positive thoughts and prayers.

Best wishes.

Mavis x

[DaiCroParticipant]

Min, Eva and Mavis,

Thank you for your messages of support.

I attended the DayCase Unit this am. for a 'clinical follow up'. They took my vital signs and bloods and then I was visited by the same Doctor who was with me throughout my two DayCase visits last week and my weekend sojourn on the ward. She has been a star… showing concern and a positive attitude in trying to get to the bottom of my illness… including the referral to the Gastro-Intesnial Clinic.:-D

My bloods are mixed… my platelets down from 140 to 68 – my neutros down from 2.5 to 1.6 but my HGB up from 8.1 to 8.8. Doctor Allison (first name, I don't recall her surname which is remiss of me) says that she is certain that my platelets and neutros will recover with rest… especially as I have my rest week from Revlimid coming up from Sunday. She has told me to rest, eat whatever I fancy, not to worry about healthy eating or calories, just what I want, when I fancy it, in small measures and plenty of fluids.8-)

It is good advice and I mean to take it and keep it. Getting from the car to the clinic and back was shattering… although in truth it was no more than sixty level yards from door to door. It took at least five minutes before I felt strong enough to fasten my seat belt but Nurse Janet, with the patience of a gaggle of saints, just waited until I was ready and drove me home carefully and with gentle conversation… where she put me straight to bed and here I am… comfortable, fed and watered and visited every half-hour to see if I want anything.:-)

All I want is her and proper rest and recovery… the past ten weeks have been awful and I hope that the current antibiotics do their job until the Gastro people can start work on fixing or erasing the problem.8-)

Dai.

[tomParticipant]

Hi Dai

So one part is looking Good am sure it will all fall into place whith rest and as for a healthy diet well for me you can throw that out of my window I have never had one? dont wish to play about with one and am sure your Dr is correct eat what you want when ect ect ect as I have done and Take a look at iccle ole me (touching wood) doing good 😀 and am sure you will be along that road pretty soon, I know you and Janet have had a rough time and I feel for you both, hope its all soon on the mend.

Keep strong

Tom "Onwards and Upwards" x

[BADGERParticipant]

Dear Dia

sorry you are still feeling under the weather I had hoped you would be clear now I was speaking to a lady at my support group about revlimid she has been on it for four years the side effect she used to get an upset tummy she was always on the Loo her consultant gave he a drug similiar to immodium and this has solved the problem hope this info may be of some use to you
Love Jo x

[AliParticipant]

Hi Dai

I am really sorry to hear you have been having a hard time lately. I do hope you are on the mend now.

Thank goodness for nurse Janet, shes worth her weight in gold.

Take it easy and rest up

Love Ali xx

[Author]

Posts