[Anonymous]

Hi all

Well, what a strange four or five weeks it has been.

I started off in the beginning of June, back and to Bart’s, seeing my trusty Proff Cavenaugh, discussing the reamurgence of the rising Paraprotein levels.

All calm, just discussions about what may be the next plan should things continue to get worse, PP wise, or whatever else may start to show.

Okay, so I carried on working, and having a good and cheerful family life, not worrying about the Multiple Myeloma, as Proff Cav was in my camp, and I have absolute trust in Bart’s and himself, along with all his colleagues.

Saw him a couple of times during June, and we had relaxed discussions around whether I wanted to consider any trial treatments as an option, just in case things progressed, so I told him that I’m more than happy to be considered for any trials, as I’d always like to keep my options open.

Even during June, I didn’t see what was ahead, as I felt well, even with the PP continuing to rise, but all blood counts still good.

Saw the Proff again on 01 July, PP still going up, but only around 45 GL at this stage, concerning, but not alarming, as all other bloods counts still reasonably good, and not concerning.

We discussed again the trial treatment, with the next phase due to start in the beginning of August, so he pencilled me in, just in case, but all done in a relaxed way, as still no urgency around having to treat the MM at this stage.

I would have seen him again during July, but a family holiday made my next visit stretch out to whereby I couldn’t make another appointment with the Proff until Monday of this week, being 29 July, so that is what we decided on.

When I saw the Proff on 01 July, my cough had already been there for a couple of weeks, but I said I would see my GP if it continued.

During July however, I started to slowly but surely start to feel unwell. Probably mainly around the second week in July, the fatigue started to kick in quite seriously, Bowel movements became a problem, The persistent cough wouldn’t stop, and the cough was becoming a real problem to me.

The hot weather didn’t help, as that just exacerbated the difficulty in sleeping, along with coughing so much in bed.

Each morning, the coughing would start, making it so very difficult to hold any sort of conversations with anybody, so I had to cancel various work commitment. The coughing also resulted in prolonged headaches, as I found I need to press the palms of each hand against each side of my head to try to ease the pain in the head due to the amount I was coughing.

Okay, a visit to the GP I thought, as I clearly needed antibiotics. Rang the surgery, got to speak to the usual harsh gatekeeper, who only offered up the nurse practitioner, and I felt too weak to argue with her, so I agreed to see her.

I really so knew what she would prescribe, the usual emoxiciling, (can’t spell it, and can’t be bother to google the correct spelling) my face dropped, as I knew from experience, that they would do nothing for me I so wanted to ask her for something stronger, but just didn’t have the will or energy.

I took them anyway, but they predictably did bugger all.

Not wanting to disrespect fit and healthy people in there nineties, but being 47, I suddenly felt twice my age, no energy, feeling so very weak, getting breathless when going up stairs, along with increased pulse rate and sweating, and just not wanting to engage in conversations, as it would just make me cough even more.

Okay, the 20th July came around, so off we all trotted for the dreaded family holiday, down to Summerset, to spend a week with my Inn-Laws and the wider family. Not going to discuss that too much, as it went down hill, but for the predictable in-house historical feuds, and my health just didn’t want to deal with any of it.

So 29 July came around, being last Monday, so off I went to Bart’s, and actually looking forward to the visit, as I was feeling so very unwell, and I knew that the Proff would sort me out.

No child care available, so I enlisted the support of a work colleague, who had previously insisted that she would want to help if ever needed, but I don’t think she knew what she was getting into, though at the end, she sure had a good idea, lol.

Met Proff Cav around 10 am last Monday, and within a couple of minutes, he showed concern, as he insisted on me telling him how I felt, as he didn’t think I looked very well.

So out poured the last few weeks, then he also commented on my weight, so I told him I’d lost a couple of stone recently.

We got out the consent forms for the trial treatment, as it was due to start the following Monday, as he thought I should start, but all dependant on blood results that he wanted to take that day, along with an ECG, bone marrow biopsy, full body x-rays etc.

Had the bloods done along with some of the minor things, and I’ll discuss the bone marrow in a minute.

Got the x-rays out of the way, so went upstairs for a blood sample, which would come back in an hour or so.

Did the usual hanging around, “as you do”, then got told that the bone marrow biopsy would be happening in around five minutes, as the Doctor was next door preparing the room, jesus, I just wish people would be honest and accurate sometimes. Back to that in a min.

My last BMB was in around august of 2011, which was carried out in my local hospital in Chelmsford.

I won’t do the detail, but what I will say, is that it left me thinking that I couldn’t go through another one of those, due to the sheer pain of it.

For the females reading, I obviously couldn’t say it was as painful as child birth, but on a scale of 1-10, and given all the physical pain that I had endured over the years having accidents from being blind, it was easily 10-out-of-ten, pain wise.

So when I knew I had to have one at Bart’s, my anxiety levels shot straight through the roof, which wasn’t helped by the delays in actually getting the procedure started, as above.

A nurse came in to tell me that the Doc would be a few minutes, “he’s just preparing the room next door”, I thought it a bit off, as I was already in a single room which had a bed in it, but thought no more of it.

After a few minutes, I started to get restless waiting for him, so started pacing the room, well, as much as you can pace a room when you are blind without keep walking into things, lol.

A lot of muttering went on, with the occasional complaint to my friend and work colleague, “what’s keeping him so bloody long”?

After about 30 minutes, he came in, and told me that he’d be a few minutes, as he needed to prepare my room for the BMB, so what he’d been doing for the last 30 minutes, I don’t know.

Feeling rather annoyed, I just let him get on with it.

Took my shirt off, lay face down on the bed in readiness, and waited.

Whilst he’s doing stuff, his mobile went off twice, which just made the whole ordeal take even longer to get started, which was making me feel quite angry, along with the anxiety just going further up and up.

I wanted to shout at him, “put that bloody phone down and get on with it”, lol.

He eventually came over, and started the usual wiping down of the area, making a mark on the skin where he would be shoving his needles in.

I have to say, the anaesthetic really hurt for some reason, resulting me in jumping around a bit, with him telling me to keep still.

At this stage, I wanted to be rude to him, but sensibly, thought better of it, after all, he had the needles, lol.

He started boring away, and I started to breathe quickly, as I knew what was coming, but strangely, it wasn’t hurting too much, but I knew it would start very very soon, but jesus, it didn’t come, and I was panicking, wondering why it wasn’t hurting.

He told me he was in, and had started to get some samples, and now I’m really confused, “where is the pain”?

I still didn’t relax, as I new something had to happen, I just couldn’t figure out what.

I kept and asking him to talk to me throughout the whole procedure, as I thought it may help me with knowing exactly where he was at, so I could predict the pain coming, but that all fell on deaf ears, as he just carried on doing what he was doing, despite me keep asking him, so at that point, my friend took over, and started to give me a running commentary on what was happening.

My god, she told me he had taken the needle out, I couldn’t believe it, where was the bloody pain, why didn’t it hurt, why wasn’t I squealing like a pig, why wasn’t I swearing, just like the last time a couple of years ago.

Well all was about to be revealed.

He didn’t tell me that he was going to be putting two needles in, the first one being quite small, the one I had just had, but never told me I would be getting the big bugger, the one that is roughly around a quarter of an inch in diameter.

That was left to my work colleague, who told me that it was coming over. Lol.

I asked him if he was putting a second needle in me, and in a matter of fact sort of manor, he said, “of course, the first was just the first needle for the small samples, now I need to take larger samples”.

With this knew news, the breathing started again, anxiety suddenly shot up again, and real fear and anger swept in, as I thought it was all over.

Well despite the second one going in, I can honestly say, the pain was still no where near as bad as the one I had a couple of years ago in my local hospital, and after another few minutes, it was all over.

Traumatic, yes it was, but it was over.

About ten minutes or so after he had left, another nurse came in with the blood results that had been taken earlier in the day.

They weren’t good, my haemoglobin had gone down to 7.5, which explained why I had been feeling so very weak and breathless over the last few week’s, but my platelets had also nose dived as well, they were down to 78.

She further explained, that with the platelets being so low, I wouldn’t be able to start the trial treatment the following Monday, as the platelets had to be at least around 100.

She also told me that I needed to stay for a while whilst they gave me a blood transfusion to get the haemoglobin levels back up.

Plan, a bag of blood, and a prescription for four days of dex, to try to get the MM bashed down a little, hopefully allowing the platelets to rise enough to start treatment next Monday.

We eventually left Bart’s at around 6.45, and managed to get home at around just after eight in the evening.

As I said earlier, my friend and work colleague didn’t realise what she was letting herself in for, lol, well, actually, neither did I.

Prior to leaving, I was told to come back on the Thursday, yesterday, for another unit of blood for the haemoglobin, and to check the platelet count.

Off we go again, only this time with my wife, as the work colleague was looking after the children this time.

They had a lovely day planned, off to the splash park, followed by ice creams, and a fun afternoon doing what ever they wanted, so knowing that, my wife and I set off for another day travelling into London, and another day in Bart’s.

Arrive there, bloods taken, and the wait for them to come back.

Off for a wander we went, as it was quite hot on the ward, back later for the blood counts.

Now it’s getting scary, I was told that my haemoglobin had improved, but I’ll still have another unit of blood, as it had gone up, but only to 8.2.

I asked about the platelets, and was told that they had dropped further, going down from 78 to 66, despite being on Dext for four days.

The nurse told me that I couldn’t start the trial the following Monday, as the platelets had dropped further, so now I’m worrying.

In her usual very professional manor, and being extremely kind, she further informed me of what Proff Cav had in mind for plan B.

He suggested that I start on Velcade immediately, i.e. there and then, so I signed the forms, and waited around for the Velcade to arrive.

He suggested two cycles of Velcade, along with the usual dose of Dext that goes with it, then to reconsider what I should do after that, and that is where I am.

I can have the Velcade administered locally if I wanted to, so chose to have it in Chelmsford, as it’s so much easier to get to.

The two cycles of Velcade will take around ten weeks, then I’ll go back to Bart’s, and see what the Proff has planned next.

When I started out on this journey, I always focused on what my Paraprotein levels were, but this time around, I don’t actually care, as they seem to have taken a back seat, due to the alarming drop in the platelets.

The first time around, 2011, my blood counts never got effected, well, only ever dropping slightly, which is the norm, but never nose diving like this time around, which I have to say, has really scared me, as I’ve never felt scared throughout this whole journey, I’ve just taken it as it comes, but have now realise, I know so very little about my disease, and all the different ways that it can hit you, not just physically, but mentally and emotionally.

I know the Proff wouldn’t have let me go home if he thought I was in real danger, so I’ll go with that for now, but I just want the next week to go quickly, as I’m desperate for my next platelets results, which will be around next Wednesday or Thursday.

There is of course other stuff going on, e.g. work, waiting for my new guide dog etc, but they can wait for another day.

Terry

[DaiCroParticipant]

Hi Terry,

You say:

[quote]The first time around, 2011, my blood counts never got effected, well, only ever dropping slightly, which is the norm, but never nose diving like this time around, which I have to say, has really scared me, as I’ve never felt scared throughout this whole journey. I’ve just taken it as it comes, but have now realised, I know so very little about my disease, and all the different ways that it can hit you, not just physically, but mentally and emotionally.[/quote]

You also said:

[quote]Where is the pain?[/quote]

As far as I can see the first quote answers the second. Your disease is playing up making your blood figures go down… and that is leading to mental and emotional spikes. The evidence is there:

[quote]Okay, a visit to the GP I thought, as I clearly needed antibiotics. Rang the surgery, got to speak to the usual harsh gatekeeper, who only offered up the nurse practitioner, [b]and I felt too weak to argue with her,[/b] so I agreed to see her. 🙁

I really so knew what she would prescribe, the usual emoxiciling, (can’t spell it, and can’t be bother to google the correct spelling) my face dropped, as I knew from experience, that they would do nothing for me[b] I so wanted to ask her for something stronger, but just didn’t have the will or energy[/b].[/quote] 🙁

If you continue to allow the people who are supposed to be taking good care of you to get away with bland, second-class caring, then the cycle of poor attention and careless provision of treatment will no doubt continue to be the norm. At some time you are going to have to put your foot down and say 'enough is enough'… and tell them why it is so. You seem to have reached the stage where your expectations of care and treatment are very low and you are actively encouraging these expectations by your acceptance and silence. 🙁

You need to ask to speak to a lead nurse at the hospital and explain your concerns about the level of care you are receiving… from your GP's surgery and the hospital. Tell the LN about your inability to speak up and speak out… it is all part of your condition and is causing you great concern and mental and emotional pain at a time when you need to be strong. Don't be afraid to ask for help… asking is the first step and it is surprising how much people respond when asked. 😎 🙂

I am sure that the extra blood and possibly extra platelets (if necessary) will set you up for the Velcade (you speak of a 10 week timescale for 2 Cycles which sounds like a once weekly infusion plus the rest week x 2). Velcade is a powerful tool and its best results are normally achieved in the first few Cycles, so I am hopeful for you during your 'Plan B'. 😎

It's your life (literally) that we are talking about here Terry… so please don't accept a second-hand service while you are trying to plan your route ahead. 😛

'Where is the pain?'… in your head, through your emotions, at a time when you are vulnerable and in need of help. Ask, ask ask… and don't take no for an answer… you simply cannot afford it.:-|

Regards

Dai.

[eveParticipant]

Hi Terry

I would say who ever did your first BMB was an amateur ,my husband has BMB every 2 months now ,it takes about 30 min,and his attertude is its bearable,except on one occation,when he said,it was a young kid she bxxxxy hurt.

Low platelets is part and parcel of the course,doctors only seem to worry about them when they are under 20,it is your HB that's way off,that is causing fatigue ,but at least you know what is causing it. My husband bloods are not bad considering his condition,exstream fatigue,lots of concerns about his condition,but no answers,sent home ,Monday back to hospital,to start 3 cycle of CDR.

I question everything, as good as any consultant is,he has many patients,as a carer and the fact that the only way to tell about Slims Myeloma is BMB,I have to rely on my instincts, unusual case he might be,but it's us who have to live with Myeloma.
I expect we will be heading for A&E before to long ,I told the consultant I will do my best to keep away from A&E in August,as all new interns ,ahaaaa.,the picture of the scream comes to mind.Eve

[tonyfParticipant]

Hi Terry, interesting four weeks.
I've mentioned this before on the forum with regard to BMB.
I attend the Leicester Royal Infirmary for treatment,I was worried sick before my BMB. No cause for concern, they give you gas and air and the whole process is absolutely painless, why don't they do that at other hospitals!
Regards
Tony F

[DaiCroParticipant]

[quote]I attend the Leicester Royal Infirmary for treatment,I was worried sick before my BMB. No cause for concern, they give you gas and air and the whole process is absolutely painless, why don't they do that at other hospitals![/quote]

Good question Tony… especially given the fear surrounding BMB's. I asked at Nottingham and I was told, by the Prof no less, that 'it wasn't the local policy'. I think that every consultant and registrar should have bi-annual BMB's as a reminder of what their patients have to go through because of their 'local policy'… I imagine that the 'policy' would soon change if they had to face one. 😀 😉 😎

Dai.

[teds31Participant]

I also find that strange when I had my BMB it was totally pain free,I had a injection then the Doc said turn over on your side and put your knees against the wall, that was to stop me sliding along the bed, and it felt like he was screwing some thing in to my back, but no pain. Ted

[wendyduffieldParticipant]

Hi Terry
You have certainly been through the mill over the last month and I can identify with much of what you say as my relapse recently started to affect my health for the first time with anaemia and slight reduction in function but still no treatment as I am trying to hold on for a trial which I cant start until 12 August. My light chains are up to 6000 now, a big number. However I have received good care and monitoring from my medical team and had my 5th bone marrow biopsy on Friday, ouch! The BMB's are generally carried out by nurses at my hospital and the consensus is that is better because doctors learn how to do it and then don't do them very often or very regularly. I don't have gas and air or a sedative but don't see the harm in asking for one, no need to bear the pain and discomfort if you don't have to.

I feel frustrated that like you that I am now having to deal with the symptoms of myeloma rather than the side effects of chemotherapy which if I had taken it two months ago could have at least been working on my myeloma.

I hope you get started on treatment soon and your platelets recover.

All the best

Wendy

[tonyfParticipant]

Haha agreed Dai,
Tony F

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