Gosh @CathyG and @summer123 that must feel weird to hear of the similarities of your two experiences.
You have definitely shown the value and support on this forum.
It is so difficult to be a spouse/carer sharing all the fears, thoughts, emotions but also having to deal with the practicalities of life, pretending to be so strong and feeling so helpless and out of control.
I remember when I was caring for my husband and I was having a particularly bad day and feeling really tearful and a friend of mine turned up with a box of my favourite choccies and she gave them to me and I was so grateful and holding back the tears till she said âthese are for your husbandâ, my world crumpled.
I also find it is so difficult to get on with normal life when I am feeling terrified.
Take lots of special care of yourselves and keep in touch.
That sounds very similar to my husband, who was diagnosed with AML two years ago. He is 73. Started on AZA July 2019 then got an infection, so in hospital for a while. A year later treatment working and felt well.
Unfortunately now not so good. Frequent blood transfusions and short stays in hospital. Lost a lot of weight and heâs not feeling as positive now and awaiting counselling. I feel exhausted with the worry and stress, and my heart goes out to everyone going through similar experiences.
People donât really have any idea whatâs really happening, they say things like âhope he gets better soonâ, but I know he wonât. Iâm trying to stay cheerful but itâs difficult. The consultant now wants to try additional treatment , so hoping for a good outcome.
Sending every good wish to you all and thank you for reading this.
Hi @ChrisI a great big welcome to our forum and I am so glad you have found us and posted.
It is so natural to feel exhausted, being a spouse must be the most draining role in the world.
You probably have similar fears, thoughts, stresses and feelings as your husband and you are both on this rollercoaster that nobody wanted to be on. You are also dealing with all the practical issues.
It sounds as if you are like me and instinctively put your âcheerfulâ mask on.
Your batteries must be completely depleted.
I have found this forum a support, just realising that I was not the only person in the world in my situation was somehow a comfort. If you would like to talk to someone the Blood Cancer UK support line details are above.
Take lots of special care of yourselves and spoil yourselves, keep posting and charge those batteries up a bit.
Take lo
Hi @summer123 think like most of us you need time to process what is happening and to come to terms with it. Itâs a tremendous shock when someone tells you that youâve got this disease that most people have never heard of. Make as much time for each other as you can and be kind to yourself. I hope that everything goes well for the treatment and life takes a better turn.
Hi @cyprusfan . Donât let anyone tell you that bone marrow/stem cell donation isnât a big deal and that itâs easy. I was a self donor and I hated every second of the donation process and found it deeply uncomfortable. I managed to get enough cells for one transplant instead of the 2 that they wanted but it took 3 attempts to get even that. Iâd admire anyone that can go through the process without turning a hair as I made sure everyone knew I wasnt enjoying it!
Thank you everyone for your comments, and I realise everyone on this forum is going through a hard and difficult journey. Its extremely hard for the person going through treatment and also hard for the people trying to support them. Although everyone is well meaning at the moment we are both struggling to come to terms with diagnosis, treatment and prognosis and the state of mind I am in the comments are scaring me even more. I probably unrealistically was thinking someone was going to say all will be OK. I feel so sorry for everyone who is poorly with these diseases but the stories are stressing me even more, So for a while I am leaving the forum, Thank you one again. Almost certainly will see you all soon.
Hi @summer123 I really appreciate you being so honest with us and I am sorry you feel stressed out by the responses you have received.
I found I was in shock for a long time and I found counselling through my GP and work really helped me get my head round it all, but that is a very personal choice and not for everyone.
Perhaps the positive thing to take from this forum is that we are all here and posting.
We are also here to support you both if you need us in the future and if you would like to talk to someone the Blood Cancer UK support line is also for you.
Look after yourselves.
Take care both of you, @summer123
@summer123 I took time out of the myeloma uk forum on Facebook around the time of having my stem cell collection 2017 for the reasons some of the stories were making me feel scared
I went into stem cell harvesting and transplant blind and led by my team and Iâm glad I did but went back to the forum after my counselling and coming out the other side
If your able please seek some help with the thoughts and feelings you have via consultant or nurse specialist
Please know that how you are feeling is perfectly normal and understandable
Hi there willow Iâm not doing too bad at the moment although Iâm anaemic and will be talking to consultant in a couple days very breathless and fatiguedâŚmy dosage of ruxolitinib was reduced from 20 to 15mg because of anemia Iâm hoping for iron injectionsâŚ
Hi @Suzyq great to hear from you, please let us know how your talk with the consultant goes and take lots of special care of yourself.
Hello @Suzyq. Itâs good to hear how you are doing. I, too, am very anaemic and have to have regular transfusions of red blood cells. Each unit of cells contains a lot of iron and the body canât get rid of the excess iron. Consequently my iron level is dangerously high. It was measured at 8800 and I think normal should be about 200! My dose of Ruxolitinib was increased and it seems it has made my Hb drop further. Like you, I am feeling weak and breathless. Fortunately I have a blood test and face-to-face appointment with the haematologist next week so I will find out more then. Hope something can be done to help you feel stronger. I sympathise. Warm wishes. Willow X
Hi @summer123 completely understand your reaction. Itâs a lot to get your head around but youâll find that you have inner strengths that you didnât realise that you had and you will get through it and come out the other side. Take care.
Hello willow hope all goes well for youâŚI must say just lately each day seems different one day good two days not so good so itâs a challenge but I stay hopeful that things will stabilise soon I have been on ruxolitinib now for 5 months
Hope you get your answers
Hello @Suzyq. Thank you for your kind words and good wishes. Unfortunately I saw a locum haematologist who was rather âbluntâ and indecisive. My lovely doctor who had been looking after me for years moved to a different job. My haemoglobin has dropped quite a bit and so I was given two units of red blood cells. So grateful to the donor but it all adds to my excess iron overload issues. Hope next time to be reviewed by a better doctor. Hope youâre not feeling too bad at the moment. Warm wishes. Willow
Hi @Suzyq, it must be a challenge for you at the moment, be kind to yourself and donât forget we are always here for you and the Blood Cancer UK support line details are above.
Look after yourself.
Hi Erica my atorvastatin was raised from 10mg to.40mg and feel so achy my muscles and knees hurt so much called gp who told me to stop the statin for a.week to see if its that making me feel so rough âŚseems thereâs always something
Yes, @Suzyq if itâs not one thing itâs another, we are such unique, complex, very special beings.
Please do let us know how things are going and donât forget the Blood Cancer UK support line is there for you, the details are above.
Look after yourself.
Hello @Suzyq. Thank you for your private message. I am pleased to be of encouragement to you. I am sorry you are suffering with aching muscles. I sympathise as I find that when my haemoglobin is low, my muscles ache more. Apparently less oxygen is being carried in the blood and so the muscles âcomplain!â That is how it was explained to me but I am not a doctor. I hope the pain eases for you. Warm wishes. Willow X
Well after 2 months of chemo, my husband coped really well. Just a few side effects, muscle pain, fatigue and terrible constipation. After a number of recent tests his consultant said he was in partial remission and could move onto the intensification stage of chemo last weekend and was admitted to hospital for 4-5 days we thought. He wasnât looking forward to it but was optimistic as things were going so well. On Monday everything stopped after blood tests they decided to do a bone marrow biopsy and mri scan, by 5pm he was told he could go home. No real explanation of problem but Doctors said dont worry!! Today his consultants secretary rang to say she wants to see him Friday. It appears the short period of remission is over, we are assuming (hope) they may start the initial rounds of chemo again. What a scary rollercoaster this is. We are having a bad day today.
Just to say thinking of you both, sending care and empathy to you, not easy for patient, not easy for the one watching and supporting - come in here whenever you need our support and keep us posted x x