MRI of cervical spine results

Worried you might have a blood cancer?
61

Hi @Jude13 great to hear from you and I think you have demonstrated so clearly that if you have any fears, concerns or questions your nurses are the ones to talk to.
You are certainly being looked after and all avenues are being investigated, you must feel on a whirlwind.
I find I feel like a cracked record sometimes as I have become an expert on myself where at my hospital each department tends to work in isolation, that is just as it is.
Please keep letting us know how you are getting on.
Be kind to yourself and spoil yourself.

2 Likes
62

Will do, thank you so much Erica.

1 Like
63

HI@Jude,I am glad to read you said "good news"and that you have
Your appointment tomorrow for more investigations,sounds like you were being listened to with your concerns about another x ray.
Its hard having to repeat yourself so I hope you do get an examination and that all goes well.
The main thing is a good night’s :sleeping:
as I know ,I sometimes forget that counting backwards from a 100 can work !My GP advised that
wishing you all the best for tomorrow.
Bannanacake

2 Likes
64

Thank you so mych Bananacake.

2 Likes
65

Hi Jude have you already had a blood test and all is okay with your no.s?

1 Like
66

Hi Mawdsley22
Thank you so much for posting. I am so sorry I am late in replying but been feeling really rubbish. No energy whatsoever. My appt at the Hospital was cancelled on Friday last minute, due to staff shortages so have to wait & see now when the next appt will be. Yes, all my blood tests were ok & the Bence Jones urine test. Just need further tests due to weight loss & to determine what the findings on my bone marrow mean.

1 Like
67

Morning @Jude13 I am so sorry to hear that your appointment was cancelled, what a blow just when it looked like you were getting somewhere.As you are loosing weight no wonder your energy levels are low ,have you thought of using a food supplement drink ,they are full of all the right nutrients which would sustain you if your appetite is poor,or if your diet isnt sustaining you .Last year I lost weight myself to do with reflux/stomach problems
Medications messing me up etc and I went on food drinks twice a day which boosted my weight and I felt better for it .
Im not saying this would be the answer for you but its worth a try and your GP could prescribe them for you.
In the meantime I do hope you are looking after yourself best you can
and that you will get rescheduled soon.
There is some useful info on the B CUK website about being kind to yourself and some meditations which may help and there is always the support line and the forum.
All the best
Bannanacake

2 Likes
68

Oh @Mawdsley22 as so often happens we get cancelled appointments and the waiting game starts again, it the worst feeling.
@Bannanacake has given you a good idea about asking the GP about food supplement drinks, my sister in law is on them for another condition and they are helping her.
I am feeling absolutely rubbish and fatigued today too (due to me stressing and overdoing it the other day).
Never worry on here there are no right or wrong ways or times of doing things.
I always think that the upside to feeling rubbishy is that I really appreciate it when I feel a bit better.
Really look after yourself and be kind to yourself.

2 Likes
69

The gp gave me the drinks but there too sweet maybe l can mix one with milk to water it down. Im drinking a lot & eating well to put on weight & jakafi l was told causes weight gain lve been told by doctor

1 Like
70

Thanks so much Bananacake. I have emailed my GP to ask about these. I am eating but still losing weight which I can’t afford so hopefully this will help. Thanks.

2 Likes
71

Hi Mawdsley22
I have never heard of Jakafi, what is it please & do you buy it over the counter?
Thank you so much.

1 Like
72

Hi Erica, I hope you will be feeling better by today. I am still feeling rubbish. I think it may be down to the lack of sleep due to worrying myself stupid.

1 Like
73

Hi@Jude13,thats great,fortisip is a good one and there are lots of flavours depending on your taste.
Jakafi is a medication I googled it.
Not surprised you’re not sleeping .I hope you hear soon. Could you talk to your GP to get some help meantime ?
Take care
Bannanacake

1 Like
74

Hello @Bannanacake and @Jude13. Jakavi is another name for Ruxolitinib which is a drug given to patients with Myelofibrosis. One of the side effects, unfortunately, in my case, is weight gain! Hope that clarifies things for you both. Warm wishes. Willow X

2 Likes
75

Hi @Willow@Jude13@Mawdsley22 yes i was going to say weight gain is a side effect of Jackavi and thank you for making that clear and for what condition it is prescribed for ,I like to know .
It is really a problem gaining weight as a side effect I know so many medications do.Ive had experience of gaining weight for past medication ,and I know other people its happened to so I understand where you are coming from.This time for me it was weight loss for which the fortisip drinks have helped.
I do hope you are doing well @Willow and that your home treatment is working without the nausea you anticipated.
Wishing you well
Bannanacake

1 Like
76

Thank you @Bannanacake for thinking of me. I am still waiting to hear from Home Care regarding starting this iron chelation (reduction) treatment. I am told it will be happening soon. I was reassured last week by my haematologist and CNS confirming that I did the right thing in insisting that Home Care monitored me rather than watching an online tutorial. Will keep you posted. Thanks again. Willow X

2 Likes
77

Hi @Willow yes I have been wondering how you were getting on and too right you should be monitored by the home team ,good for you insisting on it ,I laughed when @Erica said something like not being a flat pack from Ikea !Yes ,hope its soon and I’ll look out for your post,take care.
Bannanacake

2 Likes
78

Hi @Jude13 yes, I am a bit better today.
I have to say with me lack of sleep and worry certainly make me feel rubbishy.
Perhaps be kind to yourself and don’t try and force yourself to go to sleep just think of it as lying there resting.
Another thing to talk to your GP about. I have a friend that has a lot of trouble sleeping and just occasionally takes medication to help her sleep pattern.
Look after yourself

1 Like
79

Hi @Willow great to hear from you, I often think of you.
Please let us know how it goes with the Home Care monitoring you.
Be kind to yourself and yes, keep us posted.

1 Like
80

Hi Bananacake, Erica, Willow & Mawdsley22,
Thank you all so much for posting. I received an email from the receptionist today, saying a GP has prescribed Ensure plus…. I think they are high calorie drinks. Anyone tried these?Too late to collect today so will be tomorrow now.I hope they are not really sweet as I don’t take suger in/on anything but needs must so will take them.

2 Likes