This topic contains 57 replies, has 25 voices, and was last updated by 
Kazzam2 11 years, 5 months ago.
Hi Young Tom
Well you are right s+++t does happen,but everything should have been double checked I take it there is going to be an enquiry!!!!,
The only thing I can think of is a machine breaking down!! if this is the case,yes its just on of those things
I tend to think,when things go wrong,there is always someone in a worse position,it does help,enjoy all the food you love this week,put some fat on your bones,next week will come round very quick,evrybody must be in a position were there treatment has been put back,if it effected everyone,so its a lot of people effected,than plan ahead. good luck Tom.LoveEVE
Hey Tom
Like Helen says, thank goodness they found out before the Melphalan.
Crikey, at least you haven't got long to wait, until it starts again next Monday.
Swear away, I think you are entitled.
Chin up, love Ali x
Ouch Tom,
Reading that made me wince and Janet had to sit down to allow the idea to sink in.:-0
Janet's first reaction was 'Sue them', because she was angry for you… I said that there were other matters to sort out first. Janet reminded me of our adventure… different from yours because it took 5 days on the Harvester + 2 midnight returns for 'Pleriaxafor'… all of which produced a grand total of 2.1 million cells… enough for one shot. If someone had mucked that one up… so I agree with Janet and say 'Bugger them and Sue them'. :'-(
Medical and/or procedural negligence has occurred and you should be free to ask questions through a qualified 3rd Party and then you should accept guidance from your representative. 😐
[b]But 1st things 1st. [/b]
Yes, you will now have to go through stem mobilisation and collection all over again… but when? While you produced a bumper crop I imagine your body is now completely barren of Stem Cells and I also imagine that they will take quite a while to grow back… and what in the meantime? If it is a matter of a few weeks then all well and good but if it is a matter of months then what if you require treatment? :-0
Etcetera, etcetera. You will need medical support and guidance… so I hope UCHL are quick on the uptake and provide all the support and guidance you need to get through the initial stages of disappointment, frustration, anti-climax and disenchantment with their services.:-(
Sorry for banging on about your problem Tom but I'm bloody angry for you. I know that I would be livid if it were my problem but I also know that it would take quite a while for me to recover from the initial shock and frustration… and while we here can be scandalised, you are more likely to be traumatised… so lean on us as much as you need for advice, support and encouragement. 😎
'Sounding Boards R Us'. 🙂
Dai.
PS. I negotiated a 'responsible adult' agreement with Ellen last year regarding swearing… i.e. we would take responsibility for our own forum and monitor and control any excess use by users – on the understanding that if it became a frivolous or blatant practise then the moderators would step in. In this case… feel free. 😎
PPS. David (Perkymite) had a lot of trouble producing Stem Cells for collection and ultimately failed to produce enough for even 1 Transplant. He had to start over a while down the line… I am sure David will recount his mobilisation and collection problem and how he finally managed to get there in the end… including stats and timescales. 😎
Oh Tom,
I missed this post when I put something on to say hope you were ok, I thought it was full steam ahead. I can't believe this. Like the others sh happens but blinking echpk, as something as crucial as this, how can that happens, you had 8 million of the little cells, that's a real waste. I can't even think how you must feel. Colin could only manage 2 million nd what if that had happened to him and he'd already had two goes!
Keep your chin up…..you are being very philosophical. I would be fuming and banging someone's door down!
Vicki and Colin x
Hello young Tom, I have been following your progress as I am only a couple of weeks behind you with treatment.I am so sorry that this has happened to you,you are really bring tested aren't you. Don't worry about the policy of no swearing, cus we are all doing that on your behalf. Life's rubbish sometimes , but my nan had a great saying – 'all times pass'. So hang on in there.You have a great many people thinking of you and wishing you well.
Keep fighting,
Lesley x
Dear people, I hope you don't mind if I don't respond to each of you separately.
As far as I can make out there was a problem with the preservative they used to store the SCs in the lab. They used a preservative protocol not currently employed by the hospital trust so it didn't match when it came back. Basically this lead to 'clumping' of cells and they didn't want to risk using them.
It's all a bit vague at the moment but I hope to find out more later.
I will be starting the mobilisation injections again in two days time (thursday) they've given me a double-dose (2 injections) over 4 days. They aim to collect on Monday.
@Dai
To sue or not to sue. I'm not really the type, I did very briefly toy with the idea but will settle for an explanation of what went wrong and assurances that protocols are in place for it not to happen again. I was reading a book about someone with cancer who did go this route and spent so much time, energy and emotion doing it, ultimately they felt it was unproductive. I fully accept that for some this is absolutely the right way to go though.
Dai, I will also be seeking clarification about how many SCs I might have to harvest next week. I do seem to have responded well to the stimulation before so hopefully they'll be able to extract some again. Given they've booked me in for another collection next week they obviously feel there's a good chance. Fingers crossed.
How do I feel this morning? Demoralised and fed up. One of the positive side-effects of 'this bloody disease' (TBD) is that it has taught me resilience though, so in the spirit of Dai's 'responsible adult agreement' (please let me indulge it to the full).
Fuck it. We go on, and we stick it to the disease!
tom
Dear Tom,
Hi ? this is Eva.
Firstly, thinking of you and the immense challenges you face. You must be in a state of shock. I appreciate that at the moment, your priority can only be to survive this ordeal and get your treatment back on track.
On the other hand, I?d like to suggest that in our culture there are enormous imbalances when responding to appalling circumstances caused by mismanagement or ?accidents?. We are encouraged to keep a ?stiff upper lip? when we are confronted by outrageous behaviour on the part of institutions or individuals who wield power. ?Whistle-blowers? are made to feel that it is they, rather than the wrongdoers, who are being unfair or unreasonable. If there was no actual intent to harm us we feel dreadful about uttering a peep. And yet in our own professional lives, many of us accept responsibility for mistakes that we (or our co-workers) have made and try to ameliorate bad consequences arising from them. Institutions tend to avoid accepting such responsibility and insist that no one in particular was to blame.
Tom, this is a very serious mistake. It?s true that no-one was out to get you, but it?s also irrelevant, because when you go to hospital, you have the right to expect more than just that the staff won?t deliberately do you harm ? you have the right to expect that they will help you. Also, the fact that this mistake has affected more people than just yourself doesn?t diminish its seriousness ? in fact, it makes it more serious. There should have been numerous safeguards and checks which evidently were not observed.
When appalling mistakes are made by institutions, the usual response from their spokespeople is that ?lessons will be learned?. But in truth, if your response to their wrongdoing is fairly passive (eg, expressing disappointment verbally to various representatives of the system and receiving verbal apologies or assurances from them), nothing concrete will be done to help you, compensate you or protect others in a comparably vulnerable position in the future. Institutions only act when they have no choice but to act.
Tom, I know that in your current state you can?t be expected to tackle this yourself. If you can find a way of dealing with the immediate challenges of eating, washing, not going insane, etc, you will be doing very well. But you will have to decide whether there?s anyone close to you, or people in designated roles whose job it could be to deal with such issues, who can take on the task of uncovering what happened — an advocate who can pursue your rights for disclosure and possibly compensation. The institution was responsible for delivering a life-saving service; it was terribly derelict in its duties, and its most likely response is to ensure that this dereliction is glossed over and forgotten.
Best wishes,
Eva
Tom
So sorry to hear the SCT didn't go as planned, you must feel really down.
Hopefully you will have million of stem cells still to harvest.
Maureen
Tom,
I hope you can have adequate pain relief easily on hand.
When I had my growth hormone injections I was ok on most of the days, except for a few migraines. Then on one day I got really ill with bone pain a 9 out of 10 ,a temperature and vomiting. Oral meds were no longer effective. I couldn't travel to a hospital even in a cab – I was in Edinburgh where most places are fairly accessible but it still wasn't doable. My husband was traumatised my this incident.
Given that you'll be on a double dose, I hope so very much it will go well and the people who have suggested this will stand behind you in planning pain andn other symptom relief.
Eva
Tom,
I hope you can have adequate pain relief easily on hand.
When I had my growth hormone injections I was ok on most of the days, except for a few migraines. Then on one day I got really ill with bone pain – a 9 out of 10,on the pain scale, temperature and vomiting. Oral meds were no longer effective. I couldn't travel to a hospital even in a cab – I was in Edinburgh where most places are fairly accessible but it still wasn't doable. My husband was traumatised by this incident so I'm worried what effect a similar situation might have on your family.
Given that you'll be on a bigger dose, I hope so very much it will go well and the people who have suggested this will stand behind you in planning pain and other symptom relief.
Eva
Hi Tom
Can't believe this has happened to you…..So sorry for you mate that you have to go through all that again.I had my 1st sct in Jan 2011 and I'm due to go in again for my 2nd in the next few weeks. I had problems harvesting the first time and was on the machine for 2 days. this time started 24th May with the chemo primer and injections for 7 days but still not producing enough cells. I have waited weeks but have now had the go ahead for perixafor and on 27th June will start injections a again hoping to harvest on the following monday.
Good luck on your journey it looks like we may be on that journey together.
Ozzy
Hi Tom,
Regarding suing, I'm a fine one to talk…
[quote]I was reading a book about someone with cancer who did go down this route and spent so much time, energy and emotion doing it, they ultimately felt it was unproductive. I fully accept that for some this is absolutely the right way to go though. [/quote]
I was in this exact position 3 years ago… [i][b]I was determined to be and stay positive in tackling the disease and after spending 6 months sourcing help and assistance in confronting the consultant who wrote on my notes (still there) 'No further investigations and no further treatment,' (I was under his care for 10 months without 1 single blood test) and then he told me, 'I will see you on my mortuary slab and still not know what killed you[/i].' [/b]
I handed all my notes over to the agency who then said, 'We cannot go ahead with this case because you live in England and the incidents occurred in Wales… we believe you have a watertight case but we do not have the procedural powers to continue'.
They suggested I approached the Welsh equivalent of their agency… I did (they were the source of my original complaint) and they said… 'We cannot go ahead with this case because you live in England and the incidents occurred in Wales… we believe you have a watertight case but we do not have the procedural powers to continue'.
[b]Catch 22.[/b]
I had to choose between chasing my case through the civil courts (or private lawyers) or concentrating on fighting the disease in a positive manner… I truly found it hard to do both because raising the case against the consultant had drained me.
Looking back I wish I had persevered because I am sure that my consultant's arrogance meant that he would continue treating people/patients with contempt… Still I am sure that it has moved on too far for me to make a difference now.
Your case is different: [quote]To sue or not to sue. I'm not really the type, I did very briefly toy with the idea but will settle for an explanation of what went wrong and assurances that protocols are in place for it not to happen again.[/quote] But I still feel that any assurances should be in writing complete with protocol directives. Then again I fully appreciative that your energies will be directed down the medical routes… making sure that you get your Stem Cell Mobilisation and collection procedures in place and ready to go.
It's complicated…
Small steps and positive movements. 😎
Dai.
Hi Dai
Small steps and positive movement!! I like that.
Do you remember I had trouble because my doctor diagnosed Slim far to late and I changed to another doctor with in the practice,determend not to leave,so he could watch the result ,of his mistake!! I can except mistakes but not the dismissal of it!!!
My new doctor left the practice,so we decided to go to her new surgery,what a blessing that was.We now have two very careing doctors,were nothing is to much trouble,plus one doctor,s father died of Myeloma ,so she can see it from the carers perspective.
I found out over 400patients left,!!! Now that's what I call patient power.
As for litigation it is soul destroying,you may ask why I have no faith in SEKent NHS,it takes many many years,people blatantly lie to save there jobs,no one at the end of the day says sorry!!!!!it took a high court judge,to ask a barrister,: Have you anything else to say to this family : he apologised on behalf of the SEKent NHS..
A Midwife retired on a full pension for her blatant lies.
That's why I am so against this system in this country!!! Only when doctors can stand up and admit to making mistakes and learning from them,can we move forward,the patient can be compensated ,the doctor can make sure no mistake will happen again,and if you have a doctor ,who does not make the grade,they can be dealt with,how does some one live with themselves knowing they have done so much damage ,instead we make solicitors and barristers very rich.
No amount of money is going to give you back your health!! A little amount of money would make your life comfortable,in NZ they have a system, that when a mistake is made and proven,then you can apply for help within the system far better.
There!!! That's my rant for today,litigation ,s door opens but it's like opening a nasty box of tricks,not nice at all,.Eve
Dear Tom
I had double gcsf after my chemo priming was cancelled, just to stay on schedule… and yes it was painful as I've already described, I needed a lot of pain relief too. I also found that the effects of weariness and just not being 'right' after the collection, prompted my first foray on to the site here with Dai giving the patient wisdom on cell collection, a much better view on what to expect and that 2 days feeling off colour is just a ball park number and some are better, others worse and for much longer.
As to the sueing, yep, the bother and effort is heartbreaking and you need a lot of energy to take it anywhere.
I think as a starting point, a letter asking for clarification and critical review of the procedure, the chemicals involved and how the batch failure discovery was made, ie the steps prior to adding the preservative, interim testing, or are the cells defrosted then tested just before the chemo is given ensure safety, is there a training need for someone in a lab somewhere? I would be asking these via PALS as the least you need to know. And soon! You need assurances that this catastrophe can not happen again.
I do hope it all goes well for you from now
Love Helen
Dear everyone, I want to thank all of you who have taken the time to proffer advice and wisdom.
It hasn't been the easiest few days and I needed to mull things over and talk to a few people. I will not be pursuing any kind of legal action against the trust, for all sorts of reasons but mainly because of assurances I've received from them and lengthy discussions with people at UCLH.
I have a very clear idea of what happened now, and understand how the safety protocols that are already in place caught the problem before it became a real issue. Without going into huge amounts of detail, it was human error in the lab, which became evident through existing safety checks. I have received a number of apologies and will be getting written feedback.
I have my first double dose of GSCF injections tonight and a collection on monday.
@Dai, your story was truly spine chilling, I don't think I would have been able to prevent myself from punching him on the nose.
again many thanks all round.
Tom
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