Then off goes the bell ringing through my head. Signifies that all’s been said
The Bell – Villagers

Check up: … Haemoglobin 11.9 … Neutrophils 1.87 … Platelets 184 …

My test results from Monday much as last month. No plans to find out my FLCs this month, so just presuming my myeloma continues dormant.

Sitting in the hospital this week for my bone drugs, I can’t say I’ve missed it. Each visit I notice fresh changes. The corridors have been recently refurbished. More than half of the staff in the chemo unit have come and gone. Being here is very much standing still, for me. Standing still is a lot better than going backwards, or downhill, of course. Nevertheless, losing more than half a day every month, sitting in the chemo unit, is a tangible drag. Even with my headphones on I can’t help overhearing unwelcome snippets of other people’s woes. She had an adverse reaction to velcade. He waits endlessly for blood results. Her chemo must be attenuated. He needs assistance to walk to his seat. And then there’s me. Healthy, happy, and incurable. Fiercely independent, yet dependent on endless tests and therapies. There are charities – I can’t ignore it because there’s a poster staring me in the face to remind me about it – set up to “support” me and “help make life better” for me.

The bone drugs, this week, leave me feeling a bit shabby for 24 hours – for the first time in ages, I retire to bed. And then I have yet another hospital appointment – this time with a physio who is going to try and get my spine fit for running again. This is a great goal – but what a drag to have to keep working on my back day in, day out, probably for ever.

Sitting in the hospital makes me think about my progress. If you’d asked me, 15 months ago, where I’d be now (or even if you hadn’t asked, because it was almost a fixation for me) I’d have painted a picture of completing my PGCE (which I have not) and then backpacking the children across Asia, before setting up home in New Zealand. A carefree existence like that is simply incompatible with myeloma. It’s a tricky thing for me to even think about now, and Marisa and I don’t discuss it much. A year ago we had photos up on the wall of our kitchen of our “destination”. For a while they were simultaneously difficult to look at and impossible to take down. They are long gone now, replaced with pictures of happy children and holidays. It’s a kind of bereavement, I suppose. We are grieving for a life that never was.

Instead, where am I? On holiday, if at all possible. After the summer en famille, kicking back in France, we just took a luxurious, romantic, child-free, weekend in Venice. We’re off to Turkey next, for some autumn sun in a couple of weeks and (barring something awful happening in the meantime) planning a jaunt round The Philippines in six months: Marisa and me, our wonderful children, and some of our dearest friends. In between, I’m working, but also making time to do a share of our child care.

Oh… And we recently got the keys to a little place in Sussex, and are throwing ourselves into rural weekends. A beautiful view. A wood burning stove. Easy access to the seaside, to country walks. We’ve been blackberrying, shell collecting, castle climbing, bird watching. Bliss.

I feel a little uncomfortable with the new self image. Holidays in the south of France? A lifestyle job? (To use the term with which an old boss used to disparage anyone who prioritised family instead of graft.) A second home? Yikes. On the other hand I defy anyone to look at Marisa and me and even think – let alone vocalise – anything along the lines of “it’s alright for some”. The rest of my immune system may be compromised, but I’m largely immune to feeling guilty, any more.

Many people have warned me that it can be the time when intense treatment has ended, when life returns to “normal”, which can be the hardest on the mind. Seems ungrateful really – I have much to be thankful for, after all. But when I was ill I had a clear focus – getting well. Now I keep asking myself the purpose of being healthy. Am I making the most of it? Am I being responsible, but not too earnest? Am I enjoying myself enough, but not being too frivolous? Where’s the optimum balance?

While I went through the intense period of my treatment I could whinge to my heart’s content about bone pain, nausea and fatigue. After months of being concerned on our behalf, it’s nice for people (that’s you) not to have to worry about us. So I’m reluctant to inflict my existential uncertainties on you. (I may need all your empathies again, one day… can’t afford to give you compassion fatigue!) Easier, therefore, to write it. (And now I have.)

No news is

Courage to carry on. I’ve got to be oh so strong. ‘Cause it’s a long way home
Home – Rudimental

Check up: … Haemoglobin 11.9 … Neutrophils 2.04 … Platelets 208 … Kappa FLCs ?? …

I spent much of August ignoring – not even really thinking about – my myeloma. Fatigue snared me just once, which is remarkable given the amount of cycling, canoeing and swimming I did. Not to mention the long drives, hot weather, late nights (courtesy of good friends and French wine) and early mornings (courtesy of Lyndon).
My myeloma symptoms, as I told my doc today, are largely non-existent right now. My back is still improving, though it does require regular effort on my part. The aches get less, the mobility gets more. But I’m certain it is mostly a musculoskeletal consequence of all those fractures, as opposed to being directly attributable to myeloma, any more. I do think there’s a residual amount of myeloma pain in my hips (I guess that’s what it is, since it doesn’t seem to be going anywhere). The doc asks me about it and I explain. When I go on to say that I’m taking no painkillers, I can practically see him scratching out the notes he’s been taking. Myeloma pain at a level that doesn’t need medicating? Doesn’t count!
It would be nice if I could completely ignore myeloma. But that is something I’m not allowed to do. I had a conversation with someone a few days ago, who I’d only just met. At the end of my sorry tale (I don’t often choose to tell it, face to face, but it sort of came up in conversation) she fished hopefully for an “it’s alright now” epilogue from me. Well, it isn’t aleffingright. I’ve still got it. It still impacts my life. In very tangible ways now, my life – all our lives – are different from how they would have been without myeloma. Aside from the massive interruption while I was ill, we are making different choices, different plans, from what we would otherwise have done. Different doesn’t mean any less good, but it does mean I can see the imprint of myeloma all around me.
I had my bone strengthening treatment on Monday. Things were going very slowly, and I had a school pick-up to get to. A year ago, I wouldn’t have dared to unplug myself from the drip. Now, I figure I can make these decisions for myself . (I should point out that I’d had all my drugs, it was just running saline at the time.) I did give the nurse the opportunity to remove my canula for me, though to be honest, I’d do that myself too, if I needed to. I feel like an old lag in the chemo unit these days.
Clinic this morning. The dreaded numbers. The monthly tick-tock of living with myeloma. I haven’t spent the week worrying about it, but it is always a distraction, nonetheless, in the days between them taking the blood and me getting the result. My blood counts are all moving in the right direction. Nearly normal white blood counts, and less anaemic. But I knew that already. What I am trying not to fixate on, this morning, is the magic number that is my free light chains, the pollution that my myeloma deposits in my blood and which tells me whether my myeloma is on the move. Not a healthy fixation. So maybe it is a good thing, when I get there, to discover my light chain result from this week isn’t up on the system. Right now I don’t know my light chain score. Unease, for a moment, and then calm. After all, you probably don’t know your light chain score either, and that’s OK, isn’t it?
I feel good, therefore I am good. I just need to keep believing that my myeloma is dormant, and I can get on with my life. The doc clearly thinks so – he’s told me not to come back for another 2 months. Maybe by then I’ll have forgotten all about it. (Ha, ha.)
You know I said it’s true. I can feel the love. Can you feel it too?
Feel The Love – Rudimental

Tests and Toothache

I’ve had quite a few tests recently. My first one was a routine colonoscopy – serious bowel troubles run on my mother’s side of the family and I already get polyps. My consultant also asked if I could have biopsies for any amyloid deposits (these occur on soft tissues like the heart, lungs, kidneys and bowels) as my type of myeloma can cause this and disrupt their function. The whole thing was very lengthy, though sedation knocks me out pretty well and it only hurt a little bit – well as far as I remember. The whole thing felt like about 5 minutes but actually took nearer 50!  I had 6 polyps round an awkward bend taken out and there was no sign of deposits, but apparently the biopsies may not have gone deep enough to find them. As it was I had a fair amount of bleeding and felt as if I’d been kicked in the guts a couple of times. Took a while to get back to eating normally after all that and the disgusting laxatives. So thank goodness that’s over for another year or two.

I’m still not on any myeloma treatment. My light chain ratios are up and down still but my kappa ones have been fairly static – who knows what that means. But my consultant thought as it had been a while since I had a bone marrow test and x-rays I should have those, and I also had a synacthen test which checks the function of the adrenal glands. It can help to see whether your body is producing enough steroid hormone (cortisol). I’ve been very tired and had very low blood pressure for ages and it could be that my body didn’t start making its own steroids properly after I came of the steroid pills last year.

I had all three tests on one day which was quite difficult in terms of timing. Had a pretty rapid skeletal x-ray survey. Then down to haematology which was very busy. I was eventually started on the synacthen test, which involves having your blood tested as a baseline and then being injected with tetracosactide which stimulates the adrenals to produce cortisol. If the adrenal glands are working properly they should respond to the tetracosactide by producing cortisol. Levels of cortisol are checked by taking a blood sample.

So they test you after half an hour which was fine and then I was suddenly needed for my bone marrow test. This proved to be tricky – usually it is straight forward – there’s a page on it on the blog if you want the details. But this time they couldn’t get a sample from one hip, so I needed to turn over. Then I was ‘dry’ on the other side, so they decided to take the bone sample, which could be enough. My hip bone turned out to be like rock!! The strapping junior doctor who was doing it under supervision, really struggled and there was a lot of pushing with the needle and pulling on my hip – like DIY! It was eventually done and I had a nice little core floating in the liquid they put it in. Immediately after I had to have my last blood test! I was fine at the time, but by the next morning I was extremely sore and bruised on my hips, which is unusual for me, and it’s only just subsiding after several days. I read on one of my myeloma threads that the drug Zometa which I have had monthly to strengthen my bones, may have caused my hips to be so solid – obviously working well!

Trouble is with Zometa is that if you are on it and have to have any tooth extraction or major tooth surgery it can cause a painful and difficult jaw condition called osteonecrosis of the jaw (ONJ). Unfortunately I now have a tooth (mostly filling) which has a dying root and will need either a root canal, which is likely to not take and be very tricky to do as I have a curved root, or an extraction. Expert advice is being sought from maxillofacial at the hospital – hope they come up with something before the toothache gets worse or I get a bad infection. I have precautionary antibiotics to hand.

Well these things are sent to try us. However, the good news is that provided my test results are OK I may not need to see my consultant until early Sept, so the summer may be clear. I won’t count my chickens yet, but I am pleased that I have had a good gap off from treatment.

Hope you all have a good summer.

June – still off treatment

Surprisingly I am still not on any new treatment. While my ratios are bouncing up and down like yoyos, my kappa levels were stable at my previous appointment and went down a bit this month. Difficult to know what is happening. Angela, my consultant has decided we need to take a look at my bone marrow as it’s ages since I last had one, and also to do a full x-ray skeletal survey. Also a synacthen (adrenal gland) test, as my blood pressure is still very low and I’m very tired.

I had a bit of a weird day as I went in for my Zometa drip, blood tests (all fine) and to see Angela. Then  I zapped into town to visit the TUC Austerity Bus which I had helped to organise, and to top up my parking. I then went back to haematology to do a blood pressure postural survey which meant a 15 min lie down and then BP measured lying down and then standing.  As soon as I lay down my heart started thumping away for no apparent reason, which lasted 15 mins. My pulse rate was really high when my BP was measured. The BP itself was well up on normal, with a 7 point drop between measurements.  So no idea what caused that, unless it was all the activity combined with the Zometa.

Since then I have ached very, very badly – only just seem to be getting better. Also felt a bit like I was having a low dose of flu, which is usual for me after Zometa and also a bit anxious. Having looked up the side effects again I see low blood pressure is one, so may be a contributing factor.

Will write again probably after my colonoscopy.


Don’t let the walls cave in on you. You get what you give. That much is true
Where’s Your Head At – Basement Jaxx
Day 99 : … Haemoglobin 11.1 … Neutrophils 3.1 … Platelets 110 … Kappa FLCs 70 … Plasma in bone marrow 2% …

My fortieth birthday begins with a quick trip to the hospital for my “day 100 review“.
“How are you?” asks the doc.
“You tell me” says I.

For those of you not fluent in myeloma measures, the numbers above translate as follows: My light chains are more than 95% reduced from when I began treatment, and have been stable for 2 months. And the amount of plasma in my bone marrow is <5% (it was >30% when I was diagnosed – i.e. a third of my bone marrow was cancer). These two factors between them, mean my response qualifies as complete remission.

CR. CR. CR. Hurrah!

It’s been a long time coming.

And the other counts are all OK. My immune system is back to full strength and although I’m still anaemic, there’s time for that to recover yet too.

A good birthday present, then.

I also nipped into the chemo unit for my monthly zometa (bisphosphonates) to strengthen my bones. I’ve had a few months off, due to my transplant. I’m glad to be back on. I’m also glad to be in the chemo unit as merely an occasional visitor, rather than a regular.

From here on I will be having monthly zometa treatments, and monthly light chain tests. And we’ll wait and see what happens. Hopefully, nothing.

The test that was right that was wrong that was right

“Let everything happen to you
Beauty and terror
Just keep going
No feeling is final”
―     Rainer Maria Rilke

monet garden

When I got back from Paris a week last Friday on the Eurostar trip with my parents to see Monet’s garden, amongst my post was an odd letter from the Haematology department saying my appointment with the consultant had been cancelled and that an appointment had been arranged for Friday 17th May instead at 12pm. By the time I got the letter it was too late to ring them to say I had only just got back so it had to wait until Monday. I didn’t really worry about it but rang on Monday and spoke to the appointment secretary and explained that I had been away and unable to attend. I asked why it had been brought forward and was told something like the doctor was trying to clear down his list for 31 May when my appointment had been scheduled for.  It was rearranged for 24 May.

I duly attended, expecting to discuss the erroneous test result (see my last posts, falling off the plateau  and back on the plateau ) and perhaps to have another discussion about what treatment I might have when I do relapse bearing in mind that my kappa light chains were only 117 mg/litre, there was no immediate concerns.  I had the last appointment and when I arrived clinic was extremely busy but as I was having Zometa  (a bone strengthening treatment) as well, I went to the day unit for my bloods to be taken and my kidney function tested as usual. I had Zometa at about 3pm and still hadn’t seen my consultant but as I was leaving the day unit I bumped into him and the haematology specialist nurse as they were coming to find me. Seeing the nurse there as well made me feel slightly anxious as she doesn’t normally sit in on my appointments. We went into his consulting room and he then told me that unfortunately the first test showing the massive rise in my light chains to 617 mg/litre was in fact correct and it was the retest that was wrong. I was completely stunned. He said that both tests had been retested several times and that it was confirmed. The lab were unable to give any explanation as to how they got the retest result so wrong.

My consultant said on that basis I was now relapsing and we needed to sort out a treatment plan pretty quickly. We discussed different options but my head was in a complete spin and I couldn’t really concentrate on what he was saying. I am to ring up in a few days time to find out the result of the light chain test taken on Friday and if my kappa light chains are over 1000, I have to make an urgent appointment to see my consultant and have my kidney function tested which is a big concern and possibly start treatment straight away. If they are less than 1000 I will see him on 14 June by which time a trial may be available which might be a good option for me. So unless by some bizarre chance my light chain test this time shows a massive reduction in my light chains, I will be starting treatment very soon and all my plans of doing the triathlon in August and a couple of holidays in September will be out of the window.

After the appointment, I was in shock and disbelief.  It felt a little surreal. I debated whether to go to a friend’s 60th birthday meal that evening but I did and it was fine but that night I couldn’t sleep and the following morning I was low and tearful and was thinking of putting off my friends visit to me for the weekend that thinking that my mood would be so low I wouldn’t want to see them.  I went to my outdoor fitness session in the local park hoping that it would raise my serotonin levels but it didn’t really have that effect, instead I was worrying about whether too much exercise would be stressing my body!

My friends arrived, it was a lovely day, I told them the bad news and by the afternoon my mood had completely lifted and I was dancing to salsa music round the kitchen and the garden whilst making dinner. I am still feeling okay, after all I am in no worse position than I was when I found out that my light chains had risen to 617 on 19 April. I adjusted to that after the initial shock and disappointment, then had the elation of finding out that test was supposedly wrong, had cocktails on my birthday with friends, went to London and then Paris in a celebratory mood ( I probably wouldn’t have gone if I had known my light chains were over 600). Monet’s garden was truly beautiful (aside from the drama of my mother falling over and breaking her wrist) and Paris was well Paris, the city of light!

It is a cliché, but life at the moment is truly like being on a roller coaster!


In fact dealing with the emotional effects of having myeloma is far more challenging than the physical effects at least for me so far. It has truly been a mind blowing experience. How I can go from feeling so desperately low and alone on Saturday morning to happy and elated by late afternoon is just as strange as the recent sequence of test results.

Falling off the plateau

It seems that I have fallen off the plateau that I had made my temporary home for the last few months before the descent into relapse.   Just as I was settling in and adjusting to my new territory,  I have yet again been reined in by my rising kappa light chains which have jumped rather dramatically from 77 mg/litre to 617 mg/litre in the space of a month.


I didn’t stay at plateau point very long but it was great whilst it lasted!

Needless to say I was as disappointed and surprised as my consultant who arranged for me to have a retest last week to see if the jump is for real or some kind of freaky fluke.  There is an outside chance at most that there could have been a massive error in the lab testing but I am not holding my breath and I am not praying for a miracle or some such thing.

I mentioned in a previous post (Hello Relapse Goodbye Remission Part 2 The Calm after the Storm) that my consultant said as long as my light chains weren’t above 600mg/litre I could go to India. I feel so fortunate that I was able to go before the steep rise to 617 this last month.

So the plateau was short, January to April, to be precise, but I had adapted to the new phase of my disease and the fact that I was no longer in remission fairly quickly, once over the initial shock of relapse.  I was hoping that this phase might last until September, which would be two years post stem cell transplant, a respectable period of time.  I became comfortable with the new normal for me and was off again planning and booking trips, playing matches for the ladies team at my tennis club and starting a 16 week training plan for the Salford Triathlon in August.  This was on the premise that I would not be on treatment and my light chains would remain in the bracket of around 70 to 90.

And now I am back to not knowing what I can do when.  I feel like I get slapped down by my disease whenever I start taking things for granted.  Logically I know that my myeloma isn’t capable of such vindictive behaviour, it doesn’t have a personality, being just some cancer cells doing their thing, so if I get into slapping them back we are entering into battleground territory and you will see from a previous post (Hello Relapse Goodbye Remission) that I am not battling my disease.  However I do feel a little like Humpty Dumpty at the moment, getting to the top of the wall, balancing there a while, happy, and then falling off except that hopefully as I am not an egg, I can be put back together again!


I expect to be starting chemotherapy treatment soon after 20 months of being drug free since my stem cell transplant, apart from the monthly infusion of Zometa, a bone strengthening treatment. I am dreading it and my head is spinning with the various options that are on the cards. It is good that there are options, but options mean choices and I really don’t know how I am going to decide between them… but more of that another time!

This is likely to be my last post for some time with the blog subtitle “living in remission”.  Of course I am hoping to achieve remission or stable disease at some point in the future but I am conscious that the remission I have enjoyed may not be as long again. Unfortunately the law of diminishing returns usually applies to a second stem cell transplant if that is what I decide to have so that I may only get one half to two thirds of my first remission.

Whilst the past 20 months have not been easy, they have generally been good. I have been able to live life well with no health issues and no pain unlike some with Myeloma. I want to appreciate and celebrate what I have done whilst being at the top of the mountain so to speak since from my stem cell transplant on 1 September 2011 and then latterly on the plateau.  In more or less chronological order some of the highlights are:-

  • cycling along the Monsal trail in the Peak District one fine autumnal day
  • long weekends in London, Dublin and Alicante
  •  starting my blog
  • a holiday to Tenerife
  • seeing the Northern Lights and going dog sledding in Sweden
  • playing the piano again
  • a stay in Palma, Majorca
  • running the Manchester 10k
  •  a holiday to Lake Maggiore and Switzerland
  • a trip to Oxfordshire and Somerset
  • joining an outdoor fitness class
  • giving a patient experience talk at Myeloma UK info day
  • a tennis holiday in Corfu
  • a trip to Tromso, Norway to see the northern lights and go dog sledding (P)
  • seeing a wild tiger whilst on holiday in India (P)
  • playing (albeit badly )in a tennis tournament (P)
  • training for a triathlon (P) (R)
  • finally and hopefully going to Paris on Eurostar, to see Monet’s garden at Givernay (R)

Those marked P indicate done whilst plateauing

Those marked R indicate doing whilst relapsed!

Thanks to everyone that I shared some of these things with and those that supported me and encouraged me to do them.

January 2013

January 2013 marks eight months post-transplant, so time for an update…

I’m well and truly over the virus I had over New Year… and the accompanying anxiety.

My blood counts remain good. I don’t even look at the results now.

The result of the most recent serum-free light-chain test (the test for my type of myeloma) had not yet come back at my last clinic visit, probably due to the winter holidays, but I’ve not heard anything since, so it’s probably the same as the last one, in which the myeloma was undetectable.

They will continue to test every two months, so any relapse will be spotted in good time. I’m aware that many of my fellow myeloma buddies who are in remission get very anxious each time they have a blood test or clinic appointment. Fortunately, so far, I don’t experience any anxiety, but that may change in the future, when clinic visits are further apart and therefore become more of a ‘special event’.

The last chimerism test showed 100%, i.e. the donor cells have completely taken over my immune system. Chimerism can fluctuate, so they continue to test every 3 months for two years. They did a chimerism test at my last clinic visit, from which I’ve also not had any results, but I’m not at all concerned about it. Even though I know it can be otherwise, I expect it to stay at 100%. To be honest, I don’t even think about it.

A leukaemia patient I see in clinic, who is six months post-transplant, told me she hasn’t achieved 100% chimerism, so she will be having a “top-up”. This is the colloquial term for a Donor Lymphocyte Infusion [DLI], where they give an infusion of lymphocytes (white blood cells) from the same stem cell donor, without the need for chemotherapy and therefore a LOT less risky than a further full stem cell transplant. However a DLI can often cause more of a Graft versus Host reaction [GvHD].

Another leukaemia friend from clinic has not had any GvHD from her transplant eleven months ago, so she too may be facing a DLI in order to achieve not only a Graft versus Host response, but more importantly, a Graft versus Leukaemia response. In her case, they will need to ask the donor to donate again as they have already used his initial ‘donation’. She’s so greedy!

For more information about DLI, I found a very informative leaflet published by Leukaemia and Lymphoma Research. I was tickled to see that it features on its cover, a photo of Prof Nigel Russell and Emma (stem cell nurse specialist) from Nottingham City Hospital.

Fortunately, with 100% chimerism and some mild GvHD, I don’t need a DLI at this point, but it may be required if I relapse.

I am also still receiving infusions of Zometa (Zoledronate) to protect my bones. Initially, I had it every four weeks, but after eight months, they only give it every eight weeks. I will have a total of 16 infusions over approximately two years. After that point, there is an increased risk of osteonecrosis of the jaw [ONJ], so they stop.

Another issue is, as Wiki says: “Zoledronate is rapidly processed via the kidneys; consequently its administration is not recommended for patients with reduced renal function or kidney disease.“ Fortunately, my kidneys have improved since I was first diagnosed, no longer a subject of concern. It’s a testament to their relatively good health that I can actually receive Zometa. I couldn’t even start receiving it until September last year because they were in such poor shape.

Zometa bruiseI had Zometa infusion number eleven last week. Fortunately, it only takes fifteen minutes, plus a flush before and after, so I wasn’t in Daycase for long. Annoyingly, I had that same irritating nurse, who although she cannulated me on her first attempt, managed to create a big blue tender bruise on my hand. Owwwww!

Tuesday's pillsMy days of taking huge quantities of tablets are over for now. In the early days, I needed a chart to keep track of what to take when, at another point I had to buy an additional pill box just to contain them all. Now, it’s quite simple… just seven tablets a day – Aciclovir, Penicillin and Fluoxetine (Prozac).

The major thing that is not okay is my mouth – I still have oral Graft versus Host Disease. I mentioned previously the various treatments we have tried to reduce the soreness in my mouth. None have had any impact at all. My mouth and lips still feel tight, sore, dry and very sensitive, especially to sharp tastes like pepper, chilli, vinegar, hot drinks/foods, crusty bread or crisps. And some everyday activities make me wince… flossing my teeth, yawning or when I accidentally jab myself with a fork when eating. From time to time I get blisters – on my tongue, inside my lips or cheek. Neither the sensitivity nor the blisters stop me from eating (heaven forbid!), but they do affect my food choices and are an ongoing discomfort. It might improve… or get worse… or stay exactly the same. Nothing I can do about it!

The worst of it is when I brush my teeth with a regular mint toothpaste. I do occasionally use a fennel one from the health shop, but while I like the taste and it doesn’t hurt my mouth, I don’t quite trust its efficacy for maintaining my teeth, which need all the help they can get. However, I will be seeing my dentist for a check-up tomorrow, so I will ask her advice.

I probably need to mention, for the sake of complete honesty, that I am still having treatment for the genital warts. Without ongoing attention, they flare up again, despite the antiviral tablets. They aren’t really a problem, it’s just that I’d rather not have them, of course. I went to the GUM clinic again last week. I’m not wincing from the cryogun freezing as much now. And I don’t think any further details are required.

There are some more minor issues, which include fatigue and low-level depression – yes, despite the antidepressants, which I am doing my best to accept (more on this later); difficulty getting to sleep and waking during the night, which may be part of the fatigue; a slight skin rash and blackheads on either side of my cheekbones, which I generally ignore for the most part and am hoping will disappear at some point.

So, today is exactly eight months and one week post-transplant. It’s looking pretty good overall, but it is still early days. N.B. ‘Early days’ continues for the first two years.


I have been coming to the Macmillan Cancer Centre since the 29 August and only today, the 10 January, have I discovered the mystery place called ‘Daycare’. I have always thought that ‘Daycare’ was on the second floor where I am always treated, but no, I was wrong. ‘Daycare’ is actually Haematology Daycare up on the fourth floor.

It’s a dreamland up here. To be clear, I like the second floor where everybody knows my name and I mean them no discourtesy when I say it is a dreamland in ‘Daycare’. A quiet dreamland.


First things first, after I was directed upstairs by Joint Favourite Second Floor Receptionist 1, I discovered some new art designed to put us cancer patients at ease.


Thanks, I do have a pretty face.

I then booked myself in at the new reception to find that I had a designated seat booked for my treatment (the bone juice), number 8 and I was given a token for a hot drink. To top it all off, it turns out there is a nurse up here who knows my name too. It was all very pleasant, and was only accompanied by a 25 minute minute wait.

So now, I am sitting on a reclining chair, getting my Zometa whilst listening to something that wants to be Magic FM. Hang on, an advert just came on, it is Magic FM.


If only my consultation could be like this.