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Week 1

February 26th, 2019 No comments

To some degree uneventful. The meds are strong. I do feel side effects. Velcade injection on Mondays accompanied with 2 days steroids gets the week off to a flying start and little sleep but then later in the week the Thalidomide dominates and wacks me in the evening when I take it – only to wake up at a silly hour in the morning with sleep elusive. And generally tiredness towards the end of the week. At least that’s how the first week went.

Having said all that, pain has decreased to almost gone – no pain killers in general and blood tests yesterday show that something good is happening although they didn’t say much at all apart from they are happy with progress.

The nice “get your meds” ward at St Barts

On the whole I am super positive about everything. The diagnosis is done. I’ve been subjected to more tests than most people so at least there should not be any other “lurkers”. Just got to get a handle on this one and deal with it. Thank you so much to all who have enquired, encouraged or actively engaged in this difficult period – your support means a lot!

Blood status

Not being trained I will not comment much on the above. It would seem an L in front (like top right) means Low. But of course with the meds presumably some things will go the wrong way too so I would not read much into this.

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Day 1

February 20th, 2019 No comments

So for a while my days begin with loads of pills. Most of them are there to offset each other ironically! I feel fine – all is good. My next appointment is next week monday for the second Velcade dose and blood tests when they start to see what effect this is all having.

Its going to be a long road and I won’t bore you all with the routine. Dorothy managed to persuade Ceeri to repaint most of the apartment which is great as I may spend more time working at home to avoid germs on the underground. Painters are in there now.

More updates as and when. Feel free to share password with friends and family.

Breakfast of champions!
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The Fix Begins … or does it?

February 19th, 2019 No comments

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.

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How to begin…

February 15th, 2019 No comments

So they schedule a bone marrow biopsy to see level of infection for Tuesday 12 Feb. Also tell me the have requested an urgent MRI and I should hear from radiology shortly.

Biopsy is not really a fun thing. It involves sucking out bone marrow with a needle then taking a bone plug out (about 2cm long). Its not that sore given that they use local aneasthesia but its quite uncomfortable and a bit sore later when the meds wear off. After the biopsy we have a meeting with my assigned contact who is going to go through all the options etc – start my “counselling”. What this really means is helping get to grip with the situation and more particularly the side effects and impacts of proposed medication.

What is it?

Myeloma, also known as multiple myeloma, is a blood cancer arising from plasma cells. At any one time there are around 17,500 people living with myeloma in the UK. It accounts for 15 per cent of blood cancers, and two per cent of all cancers. Myeloma mainly affects those over the age of 65, however it has been diagnosed in people as young as 20.

Recommend reading more about it on the Myeloma UK website.

It is a blood disorder and bone marrow disease.  Plasma cells (white blood cells) in the bone marrow are faulty.  These cause Lytic Lesions to form on the bones which weaken them.  Repercussion eventually is that bones get weak and may break if not treated.  This is particularly a problem on the spine since vertebra that are weakening can lead to a fractured spinal cord. I have lesions on the lower back and other places confirmed by CT scan.  Probably these led to my back pain late last year although the Prof is somewhat confused as to how it cleared up in January!

What is the treatment plan?

The initial plan is what they call induction. This basically involves 4-6 35 day cycles of low grade chemotherapy.  This should cause the lesions to reduce or disappear and reduces the infection. After induction I will be admitted to hospital for high grade chemo and about 3 months of unpleasantness – more about this later!

The induction treatment is referred to as VTD Treatment – Velcade, Thalidomide, Dexamethasone.  Velcade to be injected weekly at hospital.  Others oral. Side effects include a reduced immune system and Fatigue.

Implications: 

  • No travel unless seriously urgent – have to be in hospital weekly and also very susceptible to disease
  • Stay away from disease (crowded tubes etc)
  • May be tired
  • Pain (more of a side effect from the disease)

I will give up smoking and reduce alchohol.

What happens after induction?

Essentially they “Reboot the immune system”.  Quite an interesting process although it will not be pleasant! This involves a number of stages:

High-dose therapy and stem cell transplantation (HDT-SCT) a slightly misleading name since they don’t actually transplant someone else’s stem cells – rather give you your own back!

In order to harvest healthy stem cells from my body they reduce the healthy cells in the bone marrow right down then pump them up again (using drugs over a week or so).  Then when the Stem Cells are being over produced and spilling into the blood (as the body reacts) they hook me up for a few hours to a machine that harvests stem cells from the blood into bags.  Stem cells are what makes the blood and do not get infected with Myeloma – this happens when the white blood cells are created.

Then I go to hospital for high level chemo.  This basically destroys loads of things good and bad including probably my hair and hopefully the remaining myeloma cells. After a few days killing stuff they put the harvested stem cells back into the body to help it get back on track making good blood. I will be in hospital for this for about 3 weeks after which it will take about 3 months to recover. Hopefully then I will be in remission!  

Myeloma is one of the most rapidly advancing fields of cancer research at the moment with huge strides made in the past 20 years with treatment.  It is likely that there will be further improvements in coming years.

My Chemo is scheduled to start 15:00 Friday 15th Feb. I will pick up the story there…

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And so it goes …

February 9th, 2019 No comments


After the usual frenzied Christmas period with way too much alchohol and everything else I elected (with some encouragement from friends including Steve Gray) to take a dry January and not drink alcohol. Too be honest I don’t think this is a bad idea anyway – we all push the limits with drinking and its good to know you can stop!

This followed a difficult 4 month period of recurring extreme back pain. I have had back pain for years – not least because of a short leg – but the pain at the end of 2018 was extreme and unlike anything I had experienced in the past. I did try hit Chelsea hospital hoping for a quick x-ray but that didn’t work and the best I got were a few pills!

Strangely the back pain reduced to inconsequential as I got in to Dry Jan which I was very happy about. Last week of January I decided to visit my private GP Dr Eric Asher for a routine medical checkup. He did all the usual and I left the surgery looking forward to an email that all was fine and my liver never looked better. Alas it was not to be – the email was more like “we need to talk”. One never likes to get these from Doctors!!!

We did talk and he told me my inflammation markers were showing that the body was fighting something and he suspected Myeloma which of course I had never heard of. He wanted to run a further blood test to confirm which takes a day or two and costs another £300 odd. Of course I said yes.

End result – Thursday afternoon he says – this is going to get expensive. You need at least a cat scan and if you are diagnosed you are going to need treatment. He suggested I visit the NHS. I registered with a local practice and they immediately on the back of his letter referred me to a hospital under the NHS 2 week rule which basically reduces delay for urgent diagnoses. By the monday of ICE week I was sitting in the office of Professor Cavenaugh – head of the Myeloma department at St Barts hospital london which is one of the foremost research hospitals for this sort of disease. 

Tricia flew across from Bermuda to be with me through this difficult time – for which I am immensely indebted to her. It’s really hard dealing with the different news which is of course very relevant and can be quite depressing and also working out how to communicate with people around you. Thank you baby! Now – back to the story…

He scheduled a CT Scan for Wednesday of ICE week (6 Feb) which industry people will know is a crazy week followed by consultation. I duly had the consultation where he confirmed that there was no doubt I am suffering from Multiple Myeloma confirmed by the sighting of Lytic Lesions on the bones which can be seen on the CT Scan. The next stages are to assess the level of infection and then to recommend treatment. I had been due to spend a week in Bermuda end of Feb. and asked if treatment could wait – he said better not to. Weirdly I started to feel pain in my chest and this contributed to a decision to press ahead and abandon plans for Bermuda.

Next step is bone marrow biopsy and MRI of the spine.

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