[DaiCroParticipant]

and this is mine – told here before many moons ago but updated for the new generation.

I moved from Pembrokeshire, South West Wales, to Nottingham in May 2009 after some poor medical care and a year of non-treatment for Secondary Bone Cancer, Primary unknown, culminating in my consultant writing up in my notes (in front of me and Janet and a horrified nurse – dictating as he wrote and they are still in my folder) that I was to receive no further treatment and no further investigation until the primary showed itself… during the 9 months under his 'care' I had exactly 0, zero, zilch blood tests. He then told me he would see me on his mortuary slab and still not know what killed me… and that that was his final word on the matter and as unpalatable as it was I would have to get used to it.

My bone damage was 5% in October 2008 (I was put in his care in late July, a 150 mile round journey for a 20 minute consult each time) and by late April that had grown to 60% – I could hardly walk 20 metres and I was in constant pain. My GP was very concerned and he and the Cancer Ward consultant at my local hospital arranged for a nuclear bone scan but they had to get my consultant's agreement – he refused. He said he would run his own tests.

I arrived to find a CT Scan on the book but half way through the Doctor in charge made a phone call and her senior ordered a full range of X-rays. I had to stand, sit, lie down and stretch for the best part of an hour which nearly did for me… at the end one of the technicians came out and said I could get dressed and she would be back in 10 minutes. She made a point of leaving a report, loosely tucked in a manilla folder, on the table next to my clothes and left me alone in the room. The report showed a take-up of extensive bone damage in 8 new areas around my body. I had complained about each of these uptakes but he got angry with me and said cancer didn't work like that – at one stage storming out of the room leaving me and Janet and a nurse completely bemused… returning a couple of minutes later with an x-ray which he threw on the light chart and thumped the switch. He pointed at several areas saying that cancer didn't move around the body at random and that these new aches and pains were just the result of my compensating for the original spinal tumour location. This was 2 weeks before the aborted local scan and 3 weeks before the CT scan.

My GP removed me from his care the next morning and we started looking for a new consultant. I was in so much pain and discomfort that the nearest hospital with a Myeloma unit in Cardiff, a 240 mile round journey, was out of the question… so we agreed I would have to move. We looked at Cardiff but I had previously lived and worked in Nottingham and I knew that the Queen's Medical Centre was the largest hospital in Europe and might offer the broadest range of medical examination and care.

My GP phoned a friend and I was referred to an oncologist at the City Hospital, part of the Nottingham Group of hospitals. In 3 weeks we moved… the house stripped and loaded into a rented removal van by the local Lifeboat Crew and the members of the local Folk Club, true friends all… lock, stock, a dog, a cat and a couple of barrels drove to a rented bungalow in rural Nottinghamshire belonging to friends of our son-in-law's parents who lived near Nottingham on the 31st of May and we met the oncologist on the 3rd of June. It took 10 days of testing (including a 24 hour Bence-Jones urine test) to confirm MM. He arranged a joint meeting with a consultant Haematologist within a week and at the end of the meeting he handed me into her care – a completely different medical world to the one I had known up to that point… the rest is modern history. 😐

Dai.

[foxy555Participant]

Hello Dai

What a story, it really did bring a tear to my eye!

You have been through so much and having to relocate to receive better medical treatment is appalling. Did you report the consultant to the BMC? Based on your experience, he really should have been investigated!

It is perhaps a postcode lottery at times! Here in Taunton Somerset, we cannot fault the GP or the hospital consultant. In a nutshell it a nearly 12 months since Pete was diagnosed and he is at home now after his SCT and so his journey (although it seemed a long time) – was very quick, compared to your awful experience.

Best wishes to you both.

Ann and Pete

[adamsp41Participant]

Hi Dai…wow as they say up here in Leeds "youv'e bin thro mill auldpal".what a terrible introduction to this horrible disease.You would think the NHS would have protocols and procedures that they MUST follow so that people do not slip through the net… and that patients irrespective of location and illness are treat with dignity and care…which in your case they clearly failed…opens your eyes that perhaps the NHS is not all rosy as some think….up here in snow logged Leeds I like Ann and Pete can only praise my GP and consultants (both kidney and haematology) as all I have received is 1st class treatment…hope the future is not as distressing…stay safe…Phil

[PeterJamesParticipant]

Hi Dai
Since my MM diagnosis last may , I have been treated at two hospitals , the last being the Christie, Manchester
In both cases the standard of treatment from the lowest to highest in the chain of command was nothing less than superb, nothing by the nurses was too much trouble . The night after my killer chemo dose I was not very well , busy puking into the paper bowl, as you do , this lovely night nurse came in & cuddled me as I puked !
Well & truly beyond the call of duty
If I had been under your evil first consultant ,the person on the morgue slab would have been him , with the pen he was writing notes with stuck throug the top of his head !
Usually I am a kindly placid old engineer , but my long gone ginger hair & temper to go with it , would have done for him
Peter

[JentayParticipant]

Hi Dai!
I was diagnised with MM at roughly the same time as you but my experiences are a million miles away from yours. After months of severe back pain, which I assumed was due to doing too much gardening etc following the death of my husband a few months previously, I was whizzed into hospital and underwent a full set of tests. Two weeks later I was informed that I had MM and treatment was commenced.

I live in the north west and cannot fault the care and consideration I've been shown on every level. I do get down at times, especially when I'm in pain as I have a lot of bone damage, but the treatment I've received has enabled me to live a near-normal life and that is something I am truly grateful for.

It's appalling that you had to go through such a terrible time at the start of your treatment. Here's hoping that it all goes right for you – and us all – from now on.

Jen

[mhnevillParticipant]

Hi Dai

It was very interesting to hear the beginning of your MM journey, having known you so long "in the ether", as it were! You still don't seem to be completely lucky in the level of care you receive, even having made a move of location. I had an dreadful hip consultant, who could be "brother" to yours! I think they thought they were auditioning for the role of "God"! In order to be able to escape from him, I had to take along a friend, who just happened to be one of the hospital social workers, along to the consultation. For 18 months he had sworn my hip wasn't infected, in spite of all the evidence. Of course, by the time it was diagnosed it meant a complicated two stage replacement. Ho, ho, as they say!! Yes, everyone has a story!

Hope your latest treatment is now going well and you are, at last, keeping free of infection.

Love.

Mavis x

[petesilverParticipant]

Wow Dai
That is some terrible treatment you got there and someone ought to be brought to book about it but as usual never will. It just shows the different treatments you can get from other hospitals.
Here in Exeter treatment is second to none the Hematology Dept in the RD&E is excellent.
Still I hope every thing is going ok now, but it says a lot when you have to move house to get decent treatment.
Pete

[DaiCroParticipant]

Thanks to all for reading and commenting… your comments are much appreciated. Looking back I can see that I did indeed have a rough ride during that first year but while the lack of treatment and care was terrible it was the amount of bone damage that occurred during the last 6 months of that period that has caused so many problems for future treatments.

I wrote full reports and sent them to the authorities who directed me to the agencies who could take up my case. The English agency snapped it up and started following it through but then found out that they could not take it any further because the case occurred in Wales and was outside their jurisdiction. They gave me a report to send to the right agency in Wales… who snapped it up and went to work… yep, they then got in touch with me to say that although the case occurred in Wales I now lived in England which put me outside of their jurisdiction.

I have half-heartedly tried to follow it up but my heart has not been in it while treatment, infections and general malaise have taken over. I have been told to try these 'no fee' solicitors that advertise on TV etc., but to date I have not contacted them. Although compensation would be very gratefully received it was never my intention… I wanted the proper authorities to act on my behalf to make sure that the consultant could not/would not behave to others like he did with me… but I would have to do it all myself – something that I am more than capable of doing but lack the energy and strength to proceed. Perhaps I will give it another go… but it is getting very late in the day for me now and other priorities have taken over.

Pete, you are right about having to move house… as a matter of fact I had to move countries, although to be fair, the first time I wrote about this a few years ago there were a couple of people who said that Cardiff was excellent… but I would still have had to move because Cardiff would have meant a 250+ round journey for every hospital visit – from Nottingham I could reach almost every hospital in England with that distance to cover.

I cannot fault my care in Nottingham but I miss Fishguard and my friends terribly and I know that the lack of care in that first year has cost me dearly in terms of life expectancy… but that's my lot and I have tried to be as positive as possible since diagnosis… and this site has been a godsend in that respect.

Much love to all.:-)

Dai.

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