Hi,
My mother was diagnosed a couple of years ago, she is in her late 70s and it has progressed to the point of needing weekly iron injections, or blood transfusions or chemo. She is upset by where she is with it at the moment and I do not know how to support her out of this because I feel upset by the news myself.
Do people have any advice or ways of coping that can help?
Does anyone know what happens when it affects your iron levels and bones so much?
thank you
Hello Fanoula, itās understandable to be upset by this news about your mum. Just being there for her will be a comfort I hope. My husband has relapsed myeloma and has lots of injections and transfusions with weekly hospital visits and injections he give himself at home, three times a week. Weāve found it very helpful to have a āhospital bagā packed with a few nightsā supplies, ready in case my husband has to be admitted, so we never go anywhere in the car without it in the boot, especially to outpatient appointments, as sometimes heās had to stay in when they run his tests.
Sometimes the worst part for my husband is the time spent waiting at outpatients, so just being with your mum, if you can, may help. Weāve found that board games like Scrabble is a great distraction, we got a travelling one thatās small and packs away, also a crossword puzzle book, easy to pick up and out down.
Also planning a treat on the way back from hospital, if you drive your mum there. Weāre lucky to be in a rural area and thereās some lovely scenic spots where we can just sit for a while and look at the view.
If your mum gets cold easily - which is very common with low iron or low red cells - we found a heated snuggle blanket is useful, think it was from Aldi.
Mentally, we try to make sure that Hope never leaves us, weāre realistic so we
hope for a nice day tomorrow
hope to see the bulbs emerging from the spring soil
hope to see robins on the bird feeder
hope to have a nice trip somewhere.
Time is precious, so treasure every moment with your mum and remember to tell her you love her.
Hope this helps, and best wishes to you as you support your mum.
Firstly welcome @Fanoula
Itās always tough aiding someone with any cancer and doing your best to care and support them as well as managing all the thoughts of seeing a loved one going through it.
To keep this short, I think itās important to note that as we older the body starts to digress and with that we need that little something to help keep it going. For people, with no physical ailments this maybe more diet, exercise and mindfulness, for the other, itās medication.
I was really nervous and still kinda am with the amount of medication I take and probably will be taking in the future with regard to quantity and dosage but as my Haematologist reminded meā¦ itās there to keep you alive and going and give you better quality of life.
With life there will be lots of ups and downs and the same goes for medication too but ultimately itās about longevity and getting as many ups as possible.
The right support can come in so many different ways from being there to listening, to taking an interest, to creating positive distractions.
What Iām trying to say isā¦ communication is key and time spent is often peoples biggest regret.
I donāt think there is an easy answer and all I can say is be kind to you and each other. Donāt take mistakes to heart and keeping trying.
I been on both sides of cancer and doing the right thing on each side is toughā¦
The support line are an amazing group of people to contact for expert advice and I would definitely recommend discussing things with them so you can easily express your situation and for them to suggest ways to best support you supporting them and give you a range of things to try.
Oh @Fanoula I am so glad you have found us, it sounds as if it is a really scary, upsetting and difficult time for both of you.
I cannot better @Carrie and @Rammie18ās responses.
Perhaps just be really kind to yourselves, from what you say you are both sharing similar fears, thoughts and feelingsā¦
Personally I find medical appointments exhausting for a start.
Perhaps just be there to spend time together, be there to listen, do lovely things together and remember both your feelings so natural.
As for yourself please do keep posting on here how it really is for you.
The Blood Cancer UK support line is also there for you on 0808 2080 888.
I found I needed some counselling, via the GP which helped me.
As for your question, it sounds as if your mum and you both would like the answer so you might both ask her medical team together.
Please do keep posting
Dear Carrie,
Thank you for your wisdom, and great practical advice. I am thinking of the games already. My mummy is Greek so probably backgammon or cards I think. She was afraid of using the electric blanket but I have just the fleece.
I appreciate being grateful for the time we do have together and thank you for saying it all so beautifully.
Fanoula
Dear @Rammie,
Thank you for your reply, it is inspirational on so many levels.
My Mummy has Primary Biliary Cirrhosis along with other things too so it has always been a medication balance. Although we think she was diagnosed 2 years ago, it was much earlier but unclear to her. She does have a medication suitcase keeping her going, this is a step change and hopefully, it will work well.
Thank you once more,
Fanoula
Dear @Erica,
Thank you for the number and the advice. I shall keep posting and seeking peopleās wisdom and support. I canāt believe it has taken me this long to recognise and find this, I am very pleased I have.
It is good to read the posts and I shall be posting once more.
Fanoula
Hi @Fanoula
I was a carer for both my parents, my Mum with Parkinsonās and my Dad with Dysphasia after a brain operation and a full carrier bag of other medical issues.
My Mum was stoic and a very bright articulate lady who presented as very cheerful but occasionally off loaded on me. My Dad was cheery with others and grumpy with me. His lack of speech did not help.
What I did find that their blackest moments were shared with me but sometimes that really helped them feel as if they could then leave their dark thoughts behind and I was left with their mental luggage. I understood this but it is still hard to shake it off. When people spoke to me about them I was surprised to hear that I was a wonderful daughter and always cheery and helpful. It did not always feel that way to me.
You sound so caring of your Mum and because of that she is able to share her fears and upsets with you. Know that you are really helping her in the way that a child can. I am so proud of you for caring so much and trying to help her journey be easier. It is wonderful that she trusts you with how she feels. It is easy to feel helpless but you are doing great things.
I love Ericaās idea of a treat after a hospital visit.
My Mum had a wicked ( and sometimes quirky) sense of humour and that would be our way to part. We saved āYou would not believe what I am going to tell youā¦ā stories to share. I would know she would still be chuckling after I left. Then remembering other silly stories.
I see something ridiculous nowadays and tell my husband and he just does not respond like my Mum did. We could keep a funny moment going for ages. I am thinking right now of the day when whilst sitting in the opticians with her trying to choose new frames. The door opened and a harassed young Mum with a screaming toddler in a buggy and two squabbling children shouted out āDo you do short cuts for children?ā The girl at the reception desk saidāI think you want the hairdressers next door.ā Now Mum and I found this a disappointing answer and spent hours thinking up other replies. ā¦ āCome right on in ā as she pulled the rusty scissors out of the drawer. Or ā Madam might you be in need of some nice spectacles to help you find the hairdressers next time?ā
I digress. What I wanted to say is that you are doing a great job and we so want you to have good news and continued good times with your Mum.
Thinking of you
Grandma Jo
Oh @GrandmaJo I loved your story, I am still chuckling, yes, it would be lost on my husband too, but it is my sense of humour.
I will remember it when I go to the options next