[DaiCroParticipant]

On Thursday last (28th July) I had my Velcade Cycle 4/4 delayed for a couple of hours while I waited for 'An Urgent Doppler Scan' to be carried out on my left leg because it was swollen and extended and the Doctor wanted to examine the possibility of a DVT.:-D He said later that it was not presenting as a typical DVT but he needed to eliminate the possibility as an urgency. 😐

The appointment was made for 2pm and a buggy was sent down to collect me from the Daycase Unit to take me to the appropriate section. I was strapped into the buggy when a call came through cancelling my appointment because the participating Doctor had to be elsewhere and I had been tagged onto his morning list by my Doctor.:-(

I had my Velcade and I was given a 5 day course of blood thinning Enoxaparin injections with instruction to come back on Monday (1st August) for blood tests and hopefully the scan at the same time. In total I was in the Daycase from 12pm until 4.55pm… waiting for an extremely bust Doctor to get back to me to say there was nothing else they could either offer or do… I was sent home in the same condition I had arrived to basically 'wait and see' what happened as a result of the injections.:-S

[b]I have just had an appointment for my 'Urgent Doppler Scan' at 10:30am on Wednesday 10th August.
[/b]

I will be attending on Monday for the blood tests and I will be taking a soupçon of attitude with me.

Dai.

[HelenParticipant]

Hi Dai
They build you up and then dash you down, so hard to bear, is it worth speaking to your consultant on Monday?
Helen

[eveParticipant]

Hi Dai
The problem is all bookings go through,a format you have to be seen with in so many days,the request is a piece of paper marked urgent just like all the other pieces of paper,this is what is happening all over the country.If the test is in high demand,they cannot cope with this demand because of staff shortage.if you were in hospital and holding up a bed,they would soon have you seen too.LOL welcome to reality.:-S
Slim was in his doctors surgery vomiting in his sink,the doctor new he had Myeloma,it still took 10 days for appointment to see consultant,admitted straight away,with hypercalcemia and acute kidney failure.With hindsight I should have taken him straight to A&E and refused to move and screamed and shouted,until they treated him.:-) >:-(
Money and men in grey suits control our hospitals and the only way is to complain to you consultant,he is god in there eyes. best of luck Eve

[DaiCroParticipant]

Hi Helen & Eve,

It was touch and go on Thursday… the Doppler Doctor threw a wobbler because his session had been extended… that's all there is to it as far as I am concerned (picked up from side-glances and looks of contempt from the nurses in Day Case although they are too professional to actually voice that contempt). I agree Eve, if I had been in it would have been sorted within the hour (as it was when I was in with my infection a couple of weeks back… the technician and Doppler Gun turned up at my bed… with the results in an instant). 😛

I will be asking for either a much quicker test (up to the Wednesday) or they might as well forget it because something will happen before the 10th… either by way of a DVT and embolism (been there and consider myself lucky to have the T.Shirt because it was a bad one) or the leg will sort itself out (it has eased slightly… but ever so slowly… I am hoping that it is the injections that are having a positive side-effect on the swelling and movement).

I have to re-iterate that this is the first time that I have been felt let-down by the City Hospital and I am slightly mollified by the fact that the problem has arisen outside the wonderful care and service provided by the superb Clinical Haematology Department. 😎 🙂

One way or another I will leave on Monday with some sort of treatment plan for my 'Rest Week' – the leg apart this Cycle has been an excellent balance of treatment and side-effects… I just hope the results prove it is a working balance.

My body says it is. 😉

I go on holiday back home to Pembrokeshire on the 3rd September… by hook or crook… and if it falls where I need to take a mid-treatment break then I feel (on this level of dose/treatment) that I will be able to cope and enjoy the holiday… an important one for me and my extended family (including 2 brothers, 2 sisters and all their partners… as well as myriad close friends and my eldest step-daughter and her partner who still live in Fishguard.8-)

Dai.

[BADGERParticipant]

Dia

10th of august well I really call that an urgent appointment I think its a docters duty to treat ill people even if it makes them a bit late did they join the profession to care or what!:-/ it makes me so angry, my bother in law has had a scan and they have found a suspicious lump in his stomach that was two weeks ago his first appointment is 23rd of august and they called that urgent as well I am sure you will make your holiday something to look forward to we had a great weeks holiday in Wales last week8-)
Love Jo

[MinParticipant]

Hi Dai
I think the important thing is you do have some treatment that will see you ok until such time as you get the Dopler scan, no doubt by the time you get it, the medication will have been so effective that the dopler with prove negative.
Im pleased you finding the low dose easier to contend with and hope your fingers recover soon from the PN.
Im sure you will make you little holiday break and by then you will be feeing on top of the world.
Hospitals …. well we cant have it all it seems. But amazed that there was only one person capable of doing a Dopler test.
It is now a mandatory test for all inpatients according to an article I watched on morning television last week. But not all hospitals have instigated it yet.
Seems so many people were attending for simple procedures that turned bad due to DVTs and the mortality rate was rising.
Your Doppler man may have found himself actually working for 8 hours a day instead of waiting around to be called. Maybe he was just not used to working all of his shift!
I dont understand why when you got your velcade and they took bloods they didn't do the d dimmer test at the same time. It s just a matter of filling another bottle when they do bloods? the results are available in no time.
They know how dangerous DVTs are and who's head would role if something untoward happened after you left there care?
This would never happen in any other country where they know there is a risk of litigation. We are all guilty of meekly accepting what is offered feeling grateful to be getting treatment for 'free'
Cant help feeling if we had to pay for the service it would be better.
I know we pay of course I do but when there is no balance sheet or list of cost and effectiveness there is a degree of lack of customer service.
Sitting around in a hairdressers for instance for 4 hours and leaving without a haircut just would not happen… You would walk out and spend you haircut money in a place that gives better service.
Well thats my moan for today
Moaning Min

[BADGERParticipant]

To moaning Min
absolutly!!!
xx:-S

[DaiCroParticipant]

Hi Min,

You are spot on regarding the Doppler treatment. God forbid that I croak over something as stupid as a DVT because a medic couldn't be fished waiting for me to arrive for what is nothing more than a 5 minute procedure… and in truth I don't believe that that is going to happen… but I'm sat here watching the Grand Prix, stuffed with Janet's lovely Pork escalopes and savoury pasta, followed by her home-made vanilla cake and ice cream and the supporting 'just so' cup of tea… with my left ankle and shin wrapped in cold compresses because I am doing localised impressions of the Elephant Man. 🙁

When I was last in the Doppler Technician was wandering around the ward with a hand-held machine and bag of accessories doing her job quickly and efficiently… I don't believe you need a doctor to carry out the simpler, hand-held scans… it could have been done, it should have been done… I was just unlucky that the Day-Case Unit Doctor was rushed off his feet and wasn't available to fight my corner.

So my Cycle ends with me feeling pretty good, as evidenced by my returning appetite and general well-being… but I am on day 17 of immobility because no-one (except the Day-Case Doctor) has had the gumption to examine and/or treat… preferring the dialectic of whether the condition is Velcade related or not… rather than just making it better.:-0

I have decided to make a stand over this tomorrow… I refuse to be marginalised and forced to suffer because of single-mindedness on the part of my consultants and the inability of the nurses (who know what needs doing but have no authority) to order scans and treatment.

It seems obvious to me that if this is not a DVT then there is definite fluid retention… several people left the Day Case with fluid retention medication but it was not offered to me… because my doctor was simply overwhelmed by his workload and didn't have time to sit and consider.

Whatever… tomorrow I will demand answers and options… calmly, considerately but firmly.

Thassorl.:-)

Dai.

[zasrsParticipant]

Hi Dai

I am gobsmacked by your treatment!! we all pay for treatment through our taxes the medics are all paid by us the arrogance of some medics drive me mad. We had one in king,s he thought nothing of letting a door smack into me he was far to much up his bottom to see a lowley terrified wife whose husband was having a bone marrow transplant!!

Good luck tomorrow Dai i am still trying to work out how august 10 is an emergency appointment for a potentally fatal clot!! At leasst you are blood thinning drugs.

sarah

[brochoParticipant]

Hi Dai like Sarah I am blooming well gobsmacked at the date you have been given for a minor procedure that could save your life!! Good luck tomorrow , give them what for! Well at least my local has got a good system for DVTs and when it was thought I had one the scan was immediate even though I was brought in late at night !!Mind you they fall short of gold standard on so many other things!! Great to hear you are feeling better and I hope your appetite continues to improve so you can enjoy the lovely meals Janet conjures up for you love Bridget x

[DaiCroParticipant]

Thank you Sarah and Bridget,

I don't want to give the impression that I am going to raise a brouhaha when I go in tomorrow, I understand that the vast majority of the staff are dedicated to delivering a first-class caring service and that applies especially to all the staff that I meet on a daily basis… most of who I know by name and many with which we can discuss home, family and familiar problems… proper job problems, not medical or work related…

Tomorrow is about looking at my problem and getting it sorted… forget Velcade and MM treatments… I want them to consider the easement, investigation and treatment that they would normally apply to the problem presented… nothing more, nothing less… and I expect to leave with it either sorted or with a plan to have it so within the next 24 hours… the way it is at the moment means I have little or no mobility and that is not acceptable.

Dai.

[TinaParticipant]

Hi Dai

I am truly shocked at what I am reading, I just can't believe how you have been treated!
Whenever there was the slightest "worry" Patrick had instant access to the Haematology ward or they would be asked to come in straight away to see the consultant who always sorted treatment immediately.
Your post particulary raised an alarm in that Patrick had a painful swelling on the back of his calf which was thought to be a DVT. After two ultra sound examinations the results were inconclusive. It was not until about six weeks later, as the swelling was getting bigger and more painful that it was visually identified as an infection. It was aspirated and was found to be a very aggressive infection which by then had taken hold as at that time Patrick was very sick.

You are right to make a stand – they need to make you a priority!!

Best of Luck

Tina XX

[mhnevillParticipant]

Hi Dai

Do hope you got some satisfaction today. So frustrating that your treatment is going well, but that it is your leg that is setting you back.

All the best.

Mavis

[DaiCroParticipant]

Of course… it came immediately apparent as soon as I arrived in the Day-Case Unit that no-one knew or remembered why I was there. 😛

I was sent home on Thursday with a 5 day course of Enoxoparin with instruction to come back on Monday pm for bloods and further enlightenment on the leg of destiny.

Another day, another doctor another dilemma… or three.

Suffice to say I was looked after by my young Doctor and she was thorough and courteous but couldn't wangle a Doppler for love nor money… so compromises were reached, one of my consultant's consulted and I left with an upgrade to a 7 day course of Enoxoparin which will take me to my next consult next Monday and the start of Velcade Cycle 5…

Like my infection I think they are hoping that things find their own levels… that the blood thinners will sort out my leg… and at least prevent anything too nasty if it doesn't.

In the meantime I will have to grimace and take it… and hope for the best.:-S

That's all that is on offer.

Dai.

[SueMParticipant]

sending you big hugs

keep taking the thinners and takecare shaving 🙂

Sue

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