Arthur's Column

Friday

So I arrived at St Barts with Dorothy for my initial Chemo and consultation at 15:00 Friday. Seems a good time – everyone wants to go home for the weekend so its not busy and I don’t have to wait long. In theory…

Turns out that the doctors are not happy that I did not get the MRI particularly as I have back pain. They want it now but radiology say at least a week away. Added to this I have a lingering cold and chest pain which is undiagnosed but I think is related to myeloma. And they can’t start chemo if there is any chance of blood clots (heart condition) which means they need to look more. So a solution is proposed…

Rather than start the chemo they admit me as an in-patient. I walk down to a bed on the 5th floor at which point I am told I am a bed patient and not to walk – even to pee! They have written me up for potential collapsed vertebra which basically fast tracks the MRI. By this time I have had an ECG to check the heart is ok and all good.

Saturday

Saturday is largely sit around and wait for something to happen. Dorothy (thanks!!!) brings me my computer and charging etc which is great (who knew there were hospitals with no TV!). And coffee from a proper machine. And company! Thanks sis! Then late afternoon I am trundled down to MRI for a spinal MRI which basically involves spending half an hour inside a really noisy metal tube. Straight from there to a CT Scan with infusion to check for clots. Then back to the ward.

Sunday

Sunday dawns with the news that the MRI shows sufficient stability that walking is OK (I did walk in to the hospital!) but they want a standing Xray which is done nice and quickly. Funny how 30 years ago when I was a patient in South Africa the best looking girls were radiologists and that holds to this day!

Then its basically about waiting. No-one is around to take a decision. It is Sunday! Pass the afternoon with a casual heart ultrasound just to be sure all is ok. I feel like a car going through a thorough MOT checkup!

I get a welcome visit from Michael Casselli and my brother Louis and 3 bottles of red wine later the party in my hospital room is off to a great start!

Monday

Monday dawns with the promise of news which isn’t in a rush then a summons for another MRI. Doctors are confused – they never ordered this. Turns out the Radiology department ordered it – new protocol for certain spinal outcomes. This time its a full body scan with some sort of cage over me – a bit claustrophobic but not too extreme. They tell me its the first one they have done – a new procedure. I wonder what it will reveal?

Now I have to wait for a decision on whether to do radio therapy in which case chemo is delayed. This decision won’t happen until Tuesday and I could go home but then I would be an out patient and any radiotherapy start would be delayed so better to stay.

Alice visits bearing red wine and prawns (fairly sure the latter are a no-go once the chemo has started properly but the wine goes down very nicely!)

Tuesday

Tuesday and it’s time to move on – surely? There is an MDT meeting from 8 until 10 at which my case will be discussed and then they will tell me. MDT means Multi Disciplinary Team – here some more info on that :

Your myeloma treatment and care will be coordinated by a team of healthcare professionals led by a consultant haematologist. You may hear this team being referred to as the Multidisciplinary Team, or the MDT. Your consultant haematologist will be responsible for leading your care throughout your treatment for myeloma. They will plan your treatment with the other members of the MDT and will involve you in all decisions relating to your care. The MDT approach is particularly important in myeloma because the diagnosis, treatment and care of patients can be very complicated, involving different types of specialists. The core MDT should include:

• At least two haematologists – doctors who specialise in blood conditions. They will have expertise in treating and managing myeloma
• A radiologist – a doctor who specialises in the use of imaging techniques (such as X-rays and MRI scans) to both diagnose and direct the treatment of myeloma
• A haematology clinical nurse specialist (CNS) – a senior nurse who has special training in haematology and/or myeloma
• A palliative care specialist – a doctor who specialises in alleviating the symptoms and complications of myeloma and the side effects of its treatment

The doctors arrive around 1 with the news. Radiotherapy not advised because the myeloma is not the problem – the issue is that the vertebra is damaged a bit like a wedge and is pushing against nerves. They can operate and have referred to someone for a decision on that but its unlikely and I am not keen. Anyway the decision is to start the chemo low grade today and discharge me once the meds are prepared. Hopefully I will be out this evening.

On the whole I am very impressed with the treatment I have received so far. The NHS has been fantastic – the people are friendly and nice to work with and the waiting around not overly extreme. St Barts is a very modern hospital inside an old skin right near St Pauls cathedral. It seems there have been extensive renovations recently which shows with the modern equipment etc.

I am going to publish these now and wait for the first round of chemo. Its my intention to keep this blog up to date so that people who re interested can find out the information here.

Any questions about prognosis – what happens after treatment, how long do I live for etc. are premature. I need to see how I react to treatment. I will also investigate lifestyle and other changes. We will see where this goes. I am positive. I am strong and relatively young for this disease – all factors in my favour. I have no intention of letting it get the better of me but do realise that there will be tough times ahead.