[DaiCroParticipant]

I can see from others experiences that we are spoilt rotten at the City Hospital, Nottingham. We are fortunate to have a specialist Day-Case Unit, complete with a Harvesting room (that also has similar equipment that cleans/treats blood) next to an adjoining general consulting waiting room with a central phlebotomy unit and a consultation area beyond leading to a suite of consulting rooms and lead nurses rooms. Up above these areas are two Wards, Toghill on the first floor, a mix of single en-suite and double and quadruple rooms for general haematology patients and on the second floor there is Fletcher Ward – a 19 room ward, all en-suite with the major function being for transplants.

We all have the numbers for all sections, including the wards. If we have infections and/or high temperatures we ring the main numbers and ask for the bleep nurses – if it is in daytime working hours we are invariably told to come in for examination. Out of hours the decision will be made by the bleep nurse, normally in conjunction with the duty doctor (the third floor contains the doctors suites and offices) – I have only known one occasion when I was told to wait until morning – if you are considered genuinely ill they bring you in and make room.

All this under one roof as a dedicated Haematology Centre, with clinical trial status (and innovators)… we even have a service where 'Volunteers' collect prescriptions and go and collect medicines from the pharmacy. These volunteers also include unofficial counsellors… all either Myeloma or other Haematology condition patients.

I get angry when I hear some of the tales on this board… if we can have such a wonderful all-in, dedicated section then why can't every other similar sized hospital. To my mind there should be at least one in every county… I know that we get patients from east-Lincoln, north-Leicestershire and east-Derbyshire… but all of these patients have a maximum of forty miles to travel.

Post-code lotteries are one thing for general medical care (although still unacceptable in this day and age) but cancer patients, especially cancer patients with needs of specialist care and specialist knowledge, should not have to expect second-best and all the llfe-threatening and life-expectancy issues that accompany such shortfalls in facilities and expertise.

Dai.

[eveParticipant]

Hi Everyone
Yes Dai it is a postcode lottery for treatment ,and from what I am hearing Nottingham does seem to come out tops.
East Kent is lacking lots of things,some patients with other forms of Cancer have to travel as far as Maidstone for specialised treatment around 65 miles one way,A friend of mine had to do it every day for a week,
The only way I consider we are lucky is at least we have the trials in the south east.:-) I understand what Helen is saying in terms of the trials,but the fact is if they think the way forward is trials,you have to make a choice and decided trials as Slim would not have 10 years any way,By going on trials there is no wondering if you will be given the opertunity for the next drug,it seems Leeds Manchester,Nottingham,and London are the trail blazers in new treatment,Kent is still having talks on injections for Velcade.Eve

[PerkymiteParticipant]

What an excellent post Dai, well done to all who have entered the debate.

I "believe? as a layman I am getting excellent treatment, but, I often wonder if I would have the same "belief" if I was a Doctor, specializing in cancers of the blood, suffering from Myeloma! I doubt I will really ever answer that.

We have a purpose built cancer unit, 500 yard from my front door. It does not have all the magic kit it would like, that I am sure and the Stem Cell Extraction machines were closed down because I am told they just did not get enough STC harvest to keep staff fully trained to use it. I know when they put my stem cells back in nurses were keen to be part of it to ensure they could tick the training box. The cancer centre is based on the old Private part of the hospital so consequently it has 9 self contained en suite rooms available plus another two open wards newly built in the last 2 years, plus Day Centre etc… It is like staying in a first class hotel.

The one thing I do not like is that I always see a different Consultant. They have normally scanned your notes and quickly read your latest blood results before seeing you. I appreciate there are all sorts of reasons for this but if I could change one thing that is what I would ask for. And, without wishing to depreciate in any way the work and skills of the Consultants, they are Consultants in Haematology or Oncology they are not experts in Myeloma and have to bone up (I thought that was appropriate phrase ? bone up) on it! My own Doctor openly states he knows nothing about the decease end of story, and we are good friends!!!

Kindest regards ? vasbyte

David

[zasrsParticipant]

Hi All

Have only just found this post very interresting, I sometimes wonder in my frequent bleak moments if Gordon would still be alive if we had carried on going to Kings, instead of our local hospital. Gordon went downhill very suddenly, i kept mentioning velcade but was told it was not appropiate, we had to fight for it 1st time round, post code lottery? Who knows. If I asked questions now I know i will be fobbed off and the outcome will not change. It seems to me all of you need to change to Nottingham or UCH !!
My love and good wishes to you all keep fighting and keep well.

Sarah

[MinParticipant]

Hi Sarah
Dont beat yourself up, the IF word is the biggest little word I have encountered .
Peter actualy was on Velcade but it stopped working. I keep asking similar questions about the next best thing but I am slowly coming to understand that we have not a minute longer on this earth than the grand master has planned for us.
The timing stinks and the method is inhuman but we cant change 'The Plan' its the people left behind to suffer that it hurts.
Time to pop the little pill again to stop my trembling and try and get at least 4 hours sleep! Booked my flights to Dubai so have something to look forward to.
Love
Min

[brochoParticipant]

Hi everyone this post has really been interesting , the differences in our care and hospital resources amazes me in this day and age . I believe we all should have reasonable access to specialist cancer centres to level this out .Recently a consultant at my local hospital was surprised that Ichose to travel to London rather than be treated locally , I dont think he was aware of the differences between the two from a patients point of view. Min and Sarah its heartbreaking when I think of you losing your husbands too soon but this b—-y illness takes its own course, and its impossible to compare when we all react to treatment so individually and the disease progression does not follow a set course .If only it were different . UCH are opening a specialist cancer hospital next spring All the building work has been completed and they are now equipping and staffing it to be ready for the spring . I think this will be the first specially built cancer hospital in the UK , hopefully it wont be long before others are built in all large towns and cities The aim is for all care and appointments to be under one roof so saving patients time and energy Each floor is for a specific range of cancers On eah floor there will be relaxation and chill out spaces for patients and families There will stations where you can log in and see how long before you are seen and leave anote to say you will be in the coffee shop or wherever All scans ,x-rays and blood tests will be done in the building and it will have its own pharmacy Macmillan will have a large amount of space for their services including complementary therapies. I really hope the publicity and positive feedback this hospital will provide means we can push for similiar hospitals to meet the needs of all cancer patients in the near future It must be so frustrating for nurses and staff to work in hospitals that lack the best resources too , so their input is vital . Well heres to the future , not too distant I hope In the meantime we have to make the best of what we have and keep asking our questions and being as informed as we need to be Thank goodness we have this forum to share experiences . love Bridget xx

[eveParticipant]

Hi Everyone
I would agree ,we need to talk about different hospitals and the general treatment we get concerning cancer it does vary from trust to trust also what drugs you might be entitled to depends on were you live.hence postcode lottery.
When you consider that myeloma is only 1% of cancers and bence jones kappa light chains is one of the rarest of that 1%,it does make you think how often do consultants come across it,they actually treat all myeloma ,s the same,yet some are more aggressive than other .
Slims consultant is or was Dr Pocock the man who fought to get the trials to E kent we have never ever seen him,we have seen the same doctor through out except for once and that was a complete waste of time as the poor man,did not know were to start it was easier to let him look at my file to get more of an idea of why and what he was dealing with,i do not think We could cope with seeing a different doctor each time,its bad enough just dealing with different doctor,s because Slim is ill,they look at you ,if to say and what do you know,as I tend to answer for Slim because Slim does not see himself going down hill,I know when he is ill. and in general doctor,s do not like dealing with the carer,this is very hard with a strange doctor.
Touch wood it does not arise very often.

I have been told there is a department in the hospital that try,s to make departments more efficient like a time and motion study,and this is what is needed in my hospital not because the staff are in efficient,but for better co operation between departments patients should not have to spend hours just waiting around for drugs.I do envy Dai who has his bloods and Velcade inside a few hours.Slim has his bloods taken at 9 and we are lucky if Velcade is up at 3 oclock then first day of cycle we can wait hours for drugs we watch staff come to work and leave for home,and we make 2 trips 60 miles all together.I all ways thought hospitals were there for patients not staff. LOL:-P 😉
To Min and Sarah I think everyone feels like you do that big WHAT IF we as mere mortals cannot do much about things mainly because of lack of knowledge,
We need to keep talking about these things treatment conditions of the units,the way treatment differs,because if hospitals and doctors are looking at this site,they might have more understanding how frustrated we feel,and as David said,how would they feel if they were in our position. Love Eve

Edit today Daily Mail page 43 article by Dr L Kirkpatrick on fighting cancer is well worth a read

[DaiCroParticipant]

Hi Eve,

I recall my consultant's observation when she spoke at the Nottingham INFODay in March – she said that some GP's go through their entire careers without coming across a MM patient. Most will only see one case… even those who see more will not retain much knowledge because they will be so far and few between cases. As you know from Slim's experience, most of us find our way to a specialist via trials and errors… quite often through CAT Scans or MRI's for back problems where metastases of bone cancer or related blood tests pick it up.

Up until this summer we had our share of waiting for meds from the pharmacy. Janet fumed that the pharmacy would often keep her (and many others) waiting for a good hour or so… without even a chair to sit on. But these days we have a 'courier' service… volunteers who go back and forth for medicines.

We also had a wait on the first day of each cycle while the batch was made up from the consultant's prescription for that cycle. We normally see my consultant circa 10.30/11 am. We normally got called through to the day-case unit (from a comfortable waiting area) about 1pm. Only once did we have to wait until 4pm… because the prescription got buried on the lead nurse's desk. A couple of times Janet popped into Nottingham city centre to the shops (2 miles) but usually I would bury my head in a book… the free tea and coffee trolley came around each hour and offered free sandwiches, orange juice and a big tin full of a variety of biscuits… so yes, we were spoilt rotten.:-)

Specialist cancer units, as described by Bridget, will no doubt become the norm… but in the meantime?

Dai.

[NadineParticipant]

Hi Dai!,

For some bizarre reason I hadn't fully read your kind,informative,interesting and completely motivating response to my post! Apologies for delay in my delay!Really don't know what to say regarding all this info!. I know for sure I'll be printing off and sharing with mum who unfortunately now has a clot in her leg therefore SCT's been delayed….

Really hope you're going to be at the Infoday on Saturday as would love to meet you!

Thanks again
Nadine x

[DaiCroParticipant]

Hi Nadine,

It was my fault… I moved my answer to another thread. 🙂

We were considering the London INFOday for no other reason than the fact that several people from this forum will be in attendance and it seemed like a great opportunity to meet up… but both Janet and I have ended up with chills/colds that have turned into upper respiratory tract infections. My GP put me onto antibiotics but fortunately there have been no temperature issues. 😎

Hopefully another time… soon. 🙂

Dai.

[eveParticipant]

Hi Dai and Everyone else
I was not sure were to put this post ,and as this topic is included I thought you might like some % of are problems with meds.

As you know Slim did CDt 6 cycles now Velcade on 4 Cycle.=10 Cycles altogether to date.
Out of 10 cycles we have only had the tablets ON TIME twice making that 20% of the time,on the bad days a wait of 4 hours,and that,s without waiting for your turn for treatment just waiting on pharmacy,and it is not just us,
No one complains and the poor nurses have to take any flack and spend there time ringing up to see were drugs are.
Velcade we have waited upto 2hours past are appointment,so now go in later.

I bit the bullet three weeks ago,calmly asked why departments cannot get organised and co -operate with one another to ensure Velcade,tablets were there on time at beginning of Cycle,guess what that cycle 4 is one of the times when every thing went smoothly
I will let you know if this co-operation between departments continues.Eve

Returned at3 oclock for Velcade and we were out by 3.20.do you think it was something I said?????????????

[Author]

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