Archive for the 'Getting My Life Back!' Category

Friday 1st February … A slight set back!

I was hoping to have started the Ibrutinib yesterday, but when I rang the pharmacy I was told that the prescription hadn’t been written and there was a delay “with the form”. This was slightly worrying because I was getting to the end of the steroids and I needed new supplies!

However a quick call to the Clinical Nurse Specialist (Amy) established that there had been an error in the application form (this is a learning curve all round I think!) but it had been resubmitted, and a prescription for the steroids had been raised for collection today.

So quick trip to pick up a reduced does of steroids and the pharmacy say the Ibrutinib will be here on Monday.

So slightly frustrating because I really want to get started on this, but there is nothing I can do to influence the course of events, so I just have to be a patient patient and enjoy the weekend! There are still huge positives, the steroids have helped, and while they have been hugely beneficial, there are long term implications, so it’s good that it is being reduced!

I suppose I’m keen to start because there is also a small risk that I might not respond well, and I’d like the reassurance that I will, but again nothing I can do about it! At least I will know as I expect to see the lump shrink, just as I have with the steroids! Nothing like a bit of re-inforcing positive feedback).

So I think a relaxing weekend and fingers crossed for Monday when we will continue…

Onwards and Upwards!

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Tuesday 29th January…Update and good news!

I had a quietish weekend after the ‘excitement’ of the last three weeks – my parents visited which was good, and I spent some time getting the house back together after my lengthy absences.

But in reality this was just marking time for the follow up appointment scheduled for yesterday afternoon, when I was hoping to find out the direction my future treatment would take. Would it be the Ibrutinib or conventional chemo?

So it was with some trepidation that I turned up at the outpatient’s clinic to see what was happening – but prepared for either. So it was with some surprise and relief that I have been accepted for the drug on a named patient basis. I think the team at Southampton were surprised as they have not managed to get the drug on that basis, so it was purely bty the efforts of the team at Guys. Maybe this will provide an ‘in’ for the Southampton team – I hope so for the sake of other patients who may be in the same position. (I will write a page about the politics and background of Ibrutinib).

So the drug has been ordered and should be here tomorrow or Thursday. It is a tablet that I take once a day at home, and go into outpatients for periodic monitoring. It is well tolerated with few side effects, so a much less unpleasant treatment plan that the alternative.

It is a drug I will keep taking for as long as it works. In relapsed patients tis is typically 2 to 3 years (but typical is a statistical type term and applies to populations, not individuals)

So this is buying more time – but in effect that is what my treatment over the last 20 years has done. This does not preclude any other chemo or treatment further down the line, and there are new treatments under development. But this gives me back some control and ability to plan things for (I hope!) the next 12 months or more (provided I respond well to it – which will be revealed on the next few weeks)

So I will keep you updated with progress. I have also released this to the wider internet for the time being – I’ll see how that goes!

A view over Southampton Hospital

So very much Onwards and Upwards! 🙂

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Saturday 26th January…And home

Yes! Made it home! It did take 4 1/2 hours for my ‘party bag’ to be delivered, which was frustrating, but at least I had ordered an evening meal so I didn’t go hungry, but I was getting a little impatient! But Katie and Chris collected me at 7pm and whisked me home where I could settle down and relax. Of the 25 days in January so far, 22 have been spent in hospital!

But I have come away with steroids for the weekend, and the supporting tablets, and a return visit to the clinic on Monday, where bloods will be checked and I hope the direction of the next stage of treatment will be determined. Katie suggests I take an overnight bag with me on Monday – I might well do that!

But nice to be home and sorting the house out. I slept fairly well (although it seems very quiet after the hospital ward!) and today I have done my washing, made some sup and baked 4 loaves of bread – powerful stuff these steroids! Getting a bit of normal lie back. And I also have my parents visiting for the weekend!

So it has been quite a month so far – not at all how I expected the year to start, and it has been a bit of a roller coaster. The speed at which this developed has been a shock (no evidence of it at the November check-up) but at least it has been caught and a plan is in progress. It has been odd loosening the links with Guys and the wonderful people there, but good to be with the wonderful people at Southampton, and makes treatment much easier for me.

I will continue posting as the treatment progresses, and of course if you wish to add comments, I’m always delighted to receive them! (first comment is held for moderation as an ant-spam precaution)

So – Onwards and Upwards! 🙂

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Thursday 17th January… and home!

Yes, I was discharged yesterday, not without some delay though!

The kidney function test completed at just after 2pm (results to follow) just as a friend, Mark, turned up to visit. (Long term readers of tis blog will know Mark as a fellow blogmaster who first set up the blog for e in 2006 as a means of keeping everyone informed about my progress when individual e mailing became too much). Mark happened to be in London yesterday, but it was fortuitous for me as I could cadge a lift home!

So I was all packed and just waiting for my discharge note and ‘party bag’ (medicines to go). I expected a bit of a delay as I was expecting a schedule to wean me off the steroids – but in the end it took four hours before the prescription was written and the drugs delivered from the pharmacy! I suppose in the priority list, medicine for a patient going home and the needs of a sick patient, my needs have lower priority, but it was frustrating. Im the end we sat and had a coffee so the bed bay could be released back to the ward. In the end no steroids as it was only a short course.

But they arrived and we caught the train to Richmond where Mark’s car was parked and I got home at about 8:30pm – tired (and to find the car had a flat battery!)

But a long but restless sleep and the sun is shining today and the world looks good.

Of course, while the immediate problem (hypercalcaemia) has been addressed, there is the longer term issue of the lymphoma. Te feeling is that it is the blastic form, which indicates a particular course f treatment, but I have a follow u appointment next Wednesday, so more may become clearer then.

I will be continuing the blog – maybe not every day, but certainly when there is something to report!

Meanwhile, I add Liz to the Percy Pig awards for her support yesterday, and my thanks to all the staff on Hedley-Atkins Ward at Guy’s Hospital.

Onwards and Upwards!

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Tuesday 15 January … Part 2

Big update deserving a post of its own!

Just had a visit from my consultant, David Welch. Good news is that my blood chemistry is significantly improved with creatinine down to 140 (still above my baseline of 130 which itself is higher than the average) at the Ca is down to 2.73 (not sure of the units!) which is still high but heading in the right direction.

So with IV stopped, and a PET scan scheduled for tomorrow I might me discharged tomorrow afternoon or Thursday morning!

So then what? Good question, well presented!

The mass is responding to the steroids, but there is still some uncertainty over the diagnosis. It could be diffused large B cell lymphoma (DLBCL) or it could be Blastic Mantle Cell lymphoma (BMCL); both look very similar under the microscope, but have different treatment options. DLBCL would be treated with conventional chemo, while BMCL would be treated with a drug called ibrutinib. Histo-pathologists are stareing down their microscopes as I type!

Ibrutinib has proved to be very effective against conventional MCL, but it’s efficacy in BMCL is less well known and it may be less effective – so maybe I am being a guinea pig!

Anyway grounds for optimism!

There are still some questions to think about – do I continue at Guys where they know me, but it’s a long trip for blood tests, or could I have blood tests done locally, or have the treatment and management at Southampton where I have been treated and have a MCL expert in their cancer centre? But I don’t need to decide that yet!

(Oh yes, I repeated the question about how steroids work in stacking cancer cells, and it seems that the exact molecular mechanism isn’t well understood. What is known is that it works! Good enough for me!)

So very much Onwards and Upwards!

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Friday 4th January – a bit more news

Just after I had written up the blog for yesterday, my chauffeur driven wheelchair was summoned to to take me for an ultrasound scan. Once I had advised the radiologist to stop looking for my spleen (it was removed 19 years ago!) I asked if he cared to share an opinion, he confirmed that there was indeed a mass (!) but more importantly it didn’t seem to be attached to any abdominal organs. He did think it was probably lymphoma related, with an outside chance that it could be a sarcoma.

After transport back to the ward, Rachael popped over to get a list of things I might need and just in time for the consultants visit. The haematology team are definitely veering towards the lymphoma route. However they want to do a biopsy and PET scan first – probably on Monday, so I will be here over the weekend!

I slept fitfully last night – about 2 hours at a time interspersed with a race to the loo complete with IV stand!

Consequently I was a tad washed out this morning and spent most of the morning dozing! (Well I can, so why not?) A junior member of the team popped in to explain was was happening and to confirm the the CT scan results correlated with the ultrasound.

The blood test this morning should that the creatinine and calcium levels are moving in the right direction, and my blood pressure is the highest it has been for some time!

Rachael came in this afternoon with a few goodies shower cream – much better than the China Pharma stuff I was given, some squash – makes drinking water far more pleasurable and (most important) a phone charger!

One big improvement is the WiFi coverage! If you read back to 2006 I was using a dial up modem through the hopital switchboard whoops!) or pointing the laptop out of the windo to latch onto any unprotected WiFi network :).

WiFi point above the bed opposite!


Only thing is that the WiFi won’t let me log into the blog so 4G to the rescue!

And I spotted this at the top of the building – I think it’s a mobile phone mast can’t quite be certain

One other thing I forgot to mention is that a shot of LMDH (low molecular ddensity heparin) is given at night to reduce the risk of blood clots. As an old hand at self administering those, it’s been fun getting my eye back in!

I’m now having fluid out put monitored, roll out the collecting bottles! Actually quite good as I don’t have to dash to the loo with IV stand in tow!

I feel somewhat relieved that we are closing in on a diagnosis as it means treatment plans can be formulated. Of course it’s a blow as well, life has taken a big turn for the better, so I hope that this is just a blip on that path.

So… Onwards and Upwards

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Wednesday 2nd January – Happy New year … from Guys

So it seems that my blog posts are like buses – nothing for ages, then two come along at once! So what, you might be asking, am I doing at Guys, on the Hedley-Atkins Ward in the evening of the second day of the New Year? Read on and I shall explain!

You will recall that I had a check up about seven weeks ago and all was fine, but about 3 weeks ago I noticed a lump near my navel which looked s bit like an umbilical hernia.

I made a an urgent appointment to see my GP who thought there was something else going and referred me to Winchester Hopital to see the Colo-Rectal Consultant and to have another blood test as my Creatine levels were high. She came to conclusion that it wasn’t bowel related related, but that a CT scan would yield more information.

Meanwhile I had given the Guys team a heads up and they brought my next review forward from May to January 9th – and then when my CT scan date was confirmed, forward again to today.

The scan was on Monday but when I arrived today the results hadn’t been sent through – however I had a full set of bloods (amazed I still have any left!) and a comprehensive examination which showed that I didn’t have any enlarged surface lymph nodes (groin, armpits) – which is good news! I will probably have another PET scan in the next couple of weeks – I think my 23rd!

So I was sent on my way but instead of catching the next train, I called in to have lunch with youngest daughter. While there, I had a call from Guys asking where I was and could I come back for urgent treatment to reduce high blood calcium levels. And here I am, admitted overnight in Hadley Atkins Ward opposite Samaritan Ward, where I had all my transplants 12 to 20 years ago.

It feels strange but oddly reassuring to be back, a lot has changed! The ‘shabby chic’ (more shabby than chic) retro look of the 1960s has gone as the wards have been completely updated. The food, about which I had strong opinions – see ‘About…Hospital Food’ – is tasty and cooked in the hospital premises instead of being sent by slow boat from St Thomas’s and then re-heated. I have just had beef goulash and Plum and Apple crumble. So it seems that the catering department has realised and embraced the notion that hospital food is meant to promote patient recovery, not hinder it!

What hasn’t changed are the wonderful nursing and medical staff.

As for me, the last three weeks have been a worry, especially as my personal life in the last three months as taken a decided turn for the better.

So in time honoured tradition,

“Onwards and Upwards”

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Tuesday 13th November – Taking stock

Well, four years since I last updated the blog – and it has actually been offline for a lot of that time. This has been for two main reasons – the first was that I made some major changes to the software which stopped the blog software from working properly, and as I said in the last post, I felt that the blog had done its job.

Medically, the last four years have been largely good, although three years ago a small lesion on my leg proved to be a skin version of the old foe – and while that was treated successfully with localised radiotherapy, it was a reminder that there is something lurking, and I need to be ever vigilant. It might have been the result of stress from the divorce – who knows. As a result I went back to Guys hospital (I had been at Kings for the late effects clinic) for 4 monthly check ups, which have now gone out to 6 monthly. The last one was two weeks ago, where I saw Karen, one of the wonderful specialist nurses that looked after and treated me over the years.

Guy’s itself has a brand new cancer centre, treating all forms of cancer, including blood cancers, although there are still the specialist haematology clinics. This was first mentioned here.

My personal life is on a far more even keel, so the tag “getting my life back” is pertinent on many levels! Life is good!

Reading back through the blog brought back many mixed emotions – at times it is hard to believe I was writing about myself. As I said to Karen, most of my memories are positive – although reading about the itraconozole and some of the food brought back less pleasant memories so maybe my (now reading) glasses really are rose tinted!

There is some sadness too – reading about people I knew who are no longer here, Elspeth, Simon M, and others.

The blog only covers 2006 onwards, but of course I was diagnosed in May 1999 – nineteen and a half years ago. Over time I have seen my children grow up – two married and all with successful and varied careers, and of course my granddaughter – now aged 11.

I have been very fortunate.

So – onwards and upwards! 🙂 click here to go to the start of the blog

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Wednesday 22 October…very embarrassed!

That I have neglected the blog for nearly twelve months :(. I suppose on one side it demonstrates how much I have moved on from the original reason for the blog, to keep me occupied and to chart my progress through long periods of hospital treatment and the subsequent trial, tribulations during the recovery phase.

So, the last twelve months has been busy. I have photos for many of the events, but too many to put up in one post, so I’ll do a series over the next couple of weeks.

However in summary, Christmas came and went, with a trip to Switzerland. I went on a dive trip to the Red Sea in April, and a camping/diveing trip to Devon in May. I have been up to stay with friends in Lancashire, and caught up with old school friends. I also have a new project in the offing – more of that in a later post. I had solar cells fitted to my house, and a few other things! so I have been busy. On the health side, I am on more or less annual check-ups, although I seemed to get booked into the wrong clinic, and the appointment frequency went up for a while! My eyes are still a bit dry, but the cataract operations were a great success, and my distance eyesight is very good.

So very much upwards and onwards – and watch this space for some updates coming up soon!

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Wednesday… Of cabbages and King’s (College Hospital)

I had almost forgotten the original purpose of the blog, with all the recent activity, but this month sees two important anniversaries. The first is six years since my bone marrow transplant (BMT) and the second is the fifth anniversary since my relapse and the long shot of the donor lymphocyte infusion that has kept me in remission. The post I made at the time is , together with other posts around that time.

Back to the present. The are certain periods of time when remissions seem to statistically occur, and one of those is at five years; so it was with some trepidation that I set off for my check-up. Trepidation not only because of the five year milestone, but also becvause it was my first visit to the new combined transplant unit at King’s, which has combined the transplant units of Guy’s and St Thomas’s (GSST) into one bigger unit.

I had appeared on the patient consultative committee prior to the amalgation, and one of my concerns was that Denmark Hill is not as easy to get to (for me) as London Bridge. This proved to be true, with an additional change (at London Bridge) and an extra 30 minutes or so travelling time. However, the hospital itself was easy to find.

I have a new, somewhat thinner file than before, with the documents from my old file scanned into King’s. No clever IT stuff allowing them to be transferred electronically, and neither were the all the historical clinical results on the GSST system available on the King’s system. Joined up? I think not!

The first impression of the unit was one of chaos! The outpatient clinic at Guy’s was in a quiet room, away from the day unit treatment centre. At King’s, the two are together. As a ‘new’ patient, blood tests hadn’t been ordered, so I was seen before bloods were taken, so I don’t have the results yet. However the physical examination showed no untoward lumps or bumps. 🙂

i’m sure the routine at King’s will sort itself out in time, but I was delighted to see a familiar face in the form of Viki, who was the nurse specialist at GSST when I was being treated. The last time I saw her was five years ago when, on her last day at work, she came and sat with me in the PET centre while I was waiting for the scan that would see how serious my relapse was (and showed that I was in remission from the chemo, and gave the green light for the lymphocyte transfusion – see the the related posts to the link above).

We had a brief chat when I arrived, and we were planning to have a longer one later, but she was with a patient, and although I waited for a while, it was clear she was going to be some time, so I had to leave to get the train home.

The journey back was a bit fraught, I missed the train to London Bridge by a few minutes, and that meant I missed the train home. Fortunately they run more frequently in the evening, but it still took over two hours to get back. On the plus side, it was lovely to walk the 15 minutes from the station to my home!

So, pending the blood test results, I am pleased that at this important milestone all appears well!

One of the wonders of the internet is the global coverage, and I must say hello to ‘Honoury Auntie’ Eileen in New Zealand who I know follows the blog (not that there has been much to follow lately… sorry). However I did send you an e mail late last year, but it seems it got lost in cyberspace! However it is lovely to know that you are following the blog.

I am also grateful to all my other followers, especially those who post comments (first comments are moderated until I read them, they then appear automatically) they are very much appreciated!

So, a good day, and one justifying “Onwards and Upwards” 🙂

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