What a beautiful, kind person you are and I totally accept and love the bag of hugs you share with me 
. We are going to spend the weekend at my friends who got married during lockdown but haven’t properly celebrated yet. They live on a small holding and are having a ‘festival type’ camping theme. We however will be there but will be staying very close by in a beautiful cottage. I feel very anxious right now because again it’s the ‘unknown’ I am dealing with, which for anyone on this site can fully appreciate is very difficult.
I will bounce back and for my friends and my other half and of course MY sake too I will do my very best to really enjoy myself. Thinking of you too my lovely new found friends x
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Hi girls, I have just been reading your posts. Last year I had an MRI as my neuro thought I had MS. The radiologist noticed some patchy bone marrow and asked for it to be checked. I never got around to it as I was off to the UK and Europe (I live in Australia) for 4 months. A couple of weeks later I got Influenza A, RSV and Covid over 4 weeks. I was also tired a lot and had been diagnosed with osteoporosis, other than that I didn’t really have any symptoms. When I returned to Aus in October, I made an appt to see a haematologist who ordered blood tests. It came back showing my para proteins were 22 per IG or something like that. I had a CT (didn’t show anything) and because she was concerned, ordered a bone marrow biopsy which showed 40-50% myeloma in the bone and 18% in the plasma. I then had a Direct Weighted MRI which is only done in one hospital in Sydney which showed exactly where the myeloma was-basically throughout my bones which have marrow, but especially in the hips, femur, humerous and spine. I started treatment the next week. Chemo involving Velcade, Dexamethasone and Revlamide. I had 4 rounds of treatment (each round is a 3 week cycle) and then a stem cell harvext and an autologous transplant. I am also given Zometa once a month which rebuilds your bones and is given to cancer patients as an IV. The myeloma para proteins have dropped to 2.9 and next week I start another 2 rounds (6 weeks) to see if we can keep lowering the numbers. It’s a scary time when you are first diagnosed but the treatment is effective and they are close to a cure. There are some great trials happening in the UK and Manchester (google it on ITV news) and the prognosis is much better than it was 10 years ago. My haem said I could have had monoclonal gammopathy of unknown significance (MGUS) for years, we’ll never know. Be positive, make sure you exercise every day even if it’s only a walk. I have tracked my journey on my instagram account for my family in the UK @fifty_at_fifty so take a look if you want to see my myeloma journey so far. I know you must be worried, but take it as an opportunity to decide what you really want to do with your life and make those plans. Happy to answer any questions if you have them, Take care. Jo
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Hi Jo thank you so much for posting this. You have given me hope for the future as only recently (last week) I been diagnosed with myeloma, it has scared the life out of me I’m not going to lie.
I am waiting on seeing the consultant again next week so hopefully I will have more answers. Thank you once again for your positive post, take care x
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Oh @Trish firstly I am so glad that you have got your mother of the bride outfit and I expect a full description when you feel like it.
I have to say your phone message was so unsensitive, but seems to happen all too often, I do not think medical people realise the impact and timing their words can have on a patient. It also seems that the consultants secretary gets the job and just does not know any more information.
So we will be here to get you through the Bank Holiday weekend, it is the unknown that my mind’s thoughts and feelings go crazy on.
Try and have a lovely weekend in the beautiful cottage, I am picturing it from here.
I am glad that my big bag of hugs has zoomed it’s way to you via @AllyBally.
I also look forward to hearing about your weekend.
Please do let us know how Tuesday goes and be very kind to yourself
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Hi @JoB in Australia, I really read your post with interest as it highlights how clearly different countries treat patients.
Yes, there are new trials and treatments coming along all the time.
It sounds as if you have family in the UK too. I hope you have support in Australia too.
I really had a time of reflection after my diagnosis too and decided what I wanted to do and with whom, I have learnt to say ‘No’ too.
Look after yourself and keep exercising and keep posting
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Hi @Trish, thank you for sharing this. It must be tough waiting for your appointment and we just wanted to say if you need a bit of support, would like a bit of support to prepare for the appointment or just want to talk things through our Support Team are here for you. (Blood cancer information and support by phone and email | Blood Cancer UK). Please don’t hesitate to reach out if that’d be useful.
Best wishes,
Tanya.
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Hi Erica I have added a couple of photos, I hope you don’t mind. This dress made me forget all the horrible things that have happed over the last month. I felt amazing so much so I burst into tears! As did the lady in the shop too.
Thank you once again for your amazing support you really are such a genuine person and I am so grateful to have you on my side.
That news last night well and truly burst the beautiful bubble I was in having found my dress but today I am in our gorgeous cottage in the middle of the country with my 2 dogs and my wonderful partner too. To top it all it’s raining but who cares we are loving it here. I also get to be with my lovely friends and to celebrate their belated wedding celebrations too. Hope you have a lovely weekend too x
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Awww you look beautiful
The consultant secretaries aren’t usually medically trained and cannot give you information over the phone as they cannot answer any questions that you will have.
The consultant is best placed for this.
Please enjoy these next few days you cannot do anything until Tuesday
I understand your scared
Myeloma doesn’t spread to the bones myeloma is in the bone marrow of the long bones eg spine/hips/arms/legs it becomes multiple myeloma when it’s in more than one place
Simply put everyones bones go through a process of bone remodelling which is breakdown rebuild usually equally but with myeloma the bone breakdown can’t be rebuilt quick enough so you get thinning bone and small holes called lesions.
This is what the CT scan will look for
I would think the CT will still go ahead
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Wow, @Trish you have me in tears too, I am speechless, that is the most perfect outfit with the perfect accessories.
There are some times when you are in a gorgeous cottage, in the middle of the country with your partner, and lovely friends and dogs when rain just does not matter. Priceless, we also have thunder rumbling around here, oh and looking up sunshine as well. xx
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Trish,
Don’t worry, the treatment is really good now and very effective, concentrate on enjoying the wedding and your weekend in the country.Am here if you want to ask any questions, it can be confusing as the Drs use a lot of complex terminology. I have a book which I take along to every appointment with all the questions that I have and I ask each question and write down the answers. It helps to focus as the info can be overwhelming to take in when you aren’t familiar with what’s going on.
Jo x
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Hi Erica,
I think I’ve been very lucky here, everything happened pretty quickly after the initial appt with the haematologist. I know the DWI MRI isn’t given routinely. I also have an outstanding GP who organised scans etc almost immediately so the haematologist had all the info she needed before I went to each appointment. How long have you had Myeloma? Are you still in treatment or on the maintenance programme now?
Jo
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That’s a great outfit!!
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Hi Tanya thank you so much for your very kind and supportive words. I am feeling much better about seeing the consultant this morning. Having that phone call on late Friday afternoon came as such a shock and totally out of the blue, I didn’t really have much time to process anything. I am going to try and not overthink things today and let what will be will be. Thank you again x
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Hi @JoB I actually have a different blood cancer, Chronic lymphocytic leukaemia (CLL), and I was diagnosed 19 yrs age, but I expect we share similar anxieties, thoughts, feelings and practicalities.x
Hi JoB thank you so much for your very kind and informative words. Everything seems to be happening so fast at the moment it’s hard to process things logically and to put things into perspective. I have so many things I need to ask but forget what they are when I get to the hospital (even when I have written them down) as each time I go something else is added to my problems!
I will sit down quietly later with my other half and put down things I need to know etc and stick to it when I see the consultant tomorrow, plus write down the reply. It’s so easy (well it is for me anyway) to forget some of what the consultant says.
I try to process what he says but then struggle to retain the information as he goes onto the next piece of information. Shall I record the consultation? Has anyone done that? I don’t think I can write at the speed he speaks to me. Even with my other half there we seem to miss aspects of what is discussed.
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Hi @Trish It sounds a good plan to sit down quietly and succinctly write down all the questions you would like to ask the consultant.
When you get into your appointment just cross them off when you have asked them, then you can see what you still need to ask.
I have heard of one other person recording a consultation, but obviously it would be up to the consultant to agree to it.
However if your other half is with you also taking notes and chipping in that certainly does help.
During the consultation it is fine to ask the consultant to wait a minute, or repeat something or explain it again.
Don’t forget medical people often speak medical speak which is a different language to us.
A few deep breaths and think that we are all there behind you and let’s hope the appointment goes better for you.
Please report back and I will be thinking of you.
Take lots of care
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Hi Erica thank you so much for your very kind comments re my mother of the bride outfit. It also made my daughter cry too. I think it will be quite an emotional day all round. Still a year to go to get used to hanging onto my emotions. x
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Hi Erica thank you so much for your helpful advice. As usual you seem to ‘get’ where I and everyone else is ‘coming from’ with all our concerns.
As it is very new and raw with me right now I feel like it’s quite overwhelming on times as there is so much information to take in all at once. I took a day of rest yesterday (no choice really) I was absolutely exhausted after our day away (I couldn’t manage the whole weekend unfortunately). I am mindful that I am emotionally exhausted as well as physically exhausted. Again I did some cleaning, as I feel this is therapeutic as well as necessary with 2 dogs that run around the house like lunatics on times, but then spent the rest of the day sleeping on the sofa.
Going to take it slowly today, we are going out for a family meal tonight so I shall try and reserve some energy for that as it is important to me to be there with them.
Thank you once again Erica for your continued advice and support and shall take on board your sound advice when I see the consultant tomorrow x
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