Hi there everyone
It’s been a long journey so far for my mum. She has had protein in her blood for nearly 12 years which was being monitored by her consultant but then she started becoming anemic and no energy tiredness etc … It took nearly a year before they gave her a bone marrow biopsy after having scans which didn’t show up anything … Time to rip up the floorboards we were told …the biopsy showed myeloma cancer but also amaloidosis which was now the primary concern, a leaking heart valve was also discovered. So all these added complications and my mum who is 79 but always very active was a terrible shock to us all. We had to get special scans done for the amaloidosis and travel to London (we live in N Ireland) so that was another ordeal for mum.
So her chemo was started in February… Some 4 months after the trip to London …that was concerning for us as we felt time was off the essence in regards to her condition … But with great trust in her consultant we believed he knew what he was doing. 5 chemos down now of what will be a lengthy journey. She has some rough days, and some not so rough, but what concerns me is her lack of appetite and with 6-8 months of chemo how this will go? We end up sometimes in conflict because I want her to eat and she doesn’t want to … Although I have learnt that little is better than nothing if it stays down, she also does not have a great swallow and despite me cutting her tablets up still bokes and chokes on them and makes herself sick. I spoke to her specialised nurse just yesterday and we are going to explore other options. I’ve practically moved in with her and my dad now, for support but I’m finding it hard knowing where the boundaries are to letting her do her own thing to manage this disease and time in her life or pushing my thinking in her. Any advice for family members / daughters what is best to make her journey less stressful ?
Good morning @Mandy2 and a big welcome to the forum. Wow, what a journey and so much to process, both for you and your mum!
I can understand your dilemma. It must be really hard to know what to do for the best and how far to push things.
The @BloodCancerUK_Nurses will be able to advise on the questions around appetite. I can see @GemmaBloodCancerUK is replying and will be able answer to some of your concerns
Your mum is very lucky to have you.
It can be very challenging for carers and we are all here to support you, as well as your mum.
Dear @Mandy2
Welcome to the Forum and thank you for being so open about your Mum’s treatment and recovery. It sounds like you are a tremendous support to her and I am sure you will gain lots of support from the Forum community here.
From a nursing point of view I would suggested talking to your Mum’s specialist nurse which you have already done which is really great. May I ask whether your Mum has seen a dietician or had a swallow assessment during her treatment? This may be worth broaching with you Mum’s Nurse Specialist about this as they would need a referral. It is also important to understand more why your Mum is finding food a struggle? Is it that she has underlying nausea, a painful mouth or perhaps she has a unpleasant taste in her mouth? I would also ask the Nurse if any of Mum’s medications could be changed to liquids/syrups/dispersible forms as this may help with managing medications. If you can ask about these things it may help get to the route of the problem. Here is some information we have on Blood cancer and eating well | Blood Cancer UK. You will see tips like little and often, snacking and trying new foods.
I know your support is so appreciated and I am sure the community will agree but perhaps just talk to your Mum about caring for her and how she feels? Here is some information about A carers’ guide to supporting your loved one through blood cancer treatment | Blood Cancer UK and it includes looking after yourself too. You are clearly a great advocate and support for you Mum so please do take care.
If you or your Mum require any further support please do get in touch: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
Thank you Nicola and Gemma I really appreciate your response …
This site is really good, I’ve read some tips this morning which have motivated me already
Hi @Mandy2 a great big welcome to our forum @Nichola75 and @GemmaBloodCancerUK have given you brilliant replies.
I reckon you are in a very difficult situation as a family member and trying to get your mum to do anything that you feel she should. It is a role reversal for both of you., in a similar situation, that the more I tried to suggest things the other person would see it as nagging and dig their heals in.
Yes, any food any drink is better than none, it is our body’s fuel.
Can your mum suggest anything she might like to try and eat?
I am always one for tinned custard and ice cream.
Your dad must be in a difficult situation. too.
It is obvious how much you care for your mum and what I would say is that you need to look after yourself and your dad just as well.
The main thing is that you can keep in touch with your mum’s specialist nurse and really say what her symptoms are, their severity and impact on your mum’s life.
Our forum and The Blood Cancer UK support line is there for you all.
Really look after yourselves and please do keep posting.
My poor Mum had huge issues with swallowing due to Parkinson’s. She was able to take her tablets by popping them onto a teaspoon of apple sauce and eventually baby food jars of smooth stewed apple. The baby food jars are nice and small and so readily available. I would check she had one opened in the fridge each time I visited because she could not always open them.
She also had trouble with her food intake and the doctor gave her a prescription for the boosted milk drinks. She was not especially fond of the flavours but settled for the vanilla one as less artificial. I think they have improved in the last few years and also come in some smaller sizes now.
She also took to smoothie drinks because the flavours were lovely and some contained milk or yoghurt which gave some calcium for bone density. She found swallowing slightly thicker liquids easier because she choked on water and very fluid drinks because her swallow reflex was slower and so she risked breathing it in rather than swallowing it.
I also bought or baked egg custards. When out and about she loved an egg custard tart which she ate the filling with a teaspoon and left the shell. I carried a light Bakelite cup with me because cafes seem to favour monstrously heavy china cups and mugs which she could not lift. I was chuffed when Marks and Spencer bought some light cups to keep on the shelf in their cafe after chatting to me.
If I came across some really tasty ripe fruit I would blend and strain some and give her a couple of pots to tempt her to eat a bit between meals. These can be good if tablets or medications leave a nasty taste. I also checked that her electric toothbrush had new brush heads to help her clean medications off her teeth so she did not live with the taste all day.
I know your Mum will not have all these issues but some ideas might help you especially with tablet swallowing if dispersive replacements are not available.
It can be upsetting when you worry about people not eating as you wish but I also came to realise that she was less active and therefore less hungry and that food can seem so daunting and so a new attitude to it of treats and ‘food you enjoy is good food’ is the way to go.
I wish you both all the best with this.
Grandma Jo
Good tips there @GrandmaJo thanks so much
Look after yourself
Thanks Grandma Jo … Good advice and thankyou for your encouragement x
Great tips @GrandmaJo
So simple I would never have thought about apple sauce/baby food to take tablets