Chemo symptoms

Hi Ls mum 

Welcome to the forum . 
I read a long time ago that chemo over a long period of time is not a sprint but a marathon so it is better to address some of the issues you are experiencing.

My mum was rough on chemo and endured it to get to surgery . The second year after a recurrence she took a different approach and chatted things through more with her team to get the help she needed . I think it took time to get the confidence to do this . They reduced her dose very slightly and it removed a lot of side effects and gave her a better balance of quality of life and treatment . She still had side effects but was more manageable.

How are you managing with hydration ? When this was slightly off my mum ‘s side effects increased . Small sips often was the approach as too much in the one sitting caused issues too . 

If your appetite is low I would also ask for the dietitian to get involved . This is a big part of sustaining chemo . But my mum had a big struggle too . Have you lost weight ? Sometimes it’s more a case of making every mouthful count . The dietitian gave my mum build up drinks which not being her favourite she could get over and we knew she was getting all the nutrients in .

Please do phone your specialist nurse and get a few things started with dietician and let them know how you are feeling and seek some guidance . Not that you can’t cope just that you want the side effects addressed . 
Please keep chatting .

Take care ,

Court 

Hi Court

It's great to get some actual advice rather than the chemo centre nurses just saying it's what to expect without contributing anything constructive.  Hydration and diet are problems. I've never been a big drinker anyway so having to have more than normal is difficult but I'm doing my best. I've always got a bottle of made up squash to hand so I haven't got to keep getting up to get a drink. My taste is shot for about a week after chemo which makes eating more difficult. I've read about having stronger tasting foods. I'll definitely speak to someone about getting some supplements though. I've lost about half a stone in a week! The other symptom I really hate is light headedness and numbness everywhere. I think that is made worse by the hydration issue though so that's a work in progress. I really do appreciate you reaching out. Take care

Ls mum

Hi Ls mum 

My mum also found milk shakes quite helpful . Gave her some fluid and addressed the weight loss . Again she could slowly sip .

Apparently the tongue has a rich blood supply so chemo makes an impact on it . My mum said her food tasted like cardboard .

I think sometimes you have to go in quite proactive in a big system with your list of questions .

Can you help me manage the dehydration and let me know if my kidneys show any impact from it or could the dizziness be connected to that . If so what can I do . Also ask if your Electrolytes are ok . We found out the hard way a slight shift can cause unpleasant side effects . Most easily treated . My mum had some iv support to get her hydrated quickly .

If you get no joy ask if the consultant can be involved to manage the dizziness as you want to go the distance but want to make sure it’s managed properly . Also your Gp can be very helpful too and don’t be frightened to get them involved if needed . I don’t think I would like to have that level of dizziness. 

Take care ,

Court 

Hi Court

The light headedness is pretty horrible. It stops me from doing so much, I don't drive because I wouldn't be safe to which impacts so much. My Dad was diagnosed with Alzheimer's on the same day as I was diagnosed with the metastases and I want to be there for him and my Mum but instead of helping I'm an additional worry.  After my first cycle I was admitted to hospital because I was so dehydrated. Sometimes I wonder why the oncologist doesn't just top me up with fluid after the chemo!  It seems that they know what symptoms I'm going to have but there's little help so far. Having said that he started me on pretty strong anti emetics after the first time.

I so want to stay the course for obvious reasons, but when I have a good week/few days and then I know I'm going to go back to feeling rubbish again, I do wonder.

Thank you

Ls mum

All great tips from Court.

I found that my blood pressure medication needed tweeking during chemo as I was feeling fuzzy and lightheaded

.worth asking about if you take it.also my electrolytes went very low.

The food tasting like cardboard was certainly helped by adding more herbs and spices.

Kath

Hi Ls mum.

I found ginger a godsend as in meals, snacks and drinks it gave helpful flavour and sharpness, while reducing nausea at the same time.

That’s a lot . I think my mum’s Oxaliplatin was reduced by 20% and that helped .

My sister just got Jelly drops for my mum as she is currently dehydrated. They are sweets that are 90% fluid and a young boy designed them for his grandparent who had dementia and was difficult to hydrate . Every little helps .

Have you asked of it would be possible to get some help again with fluids ?

Our helping staff can access nurses so you might want to phone them for some other ideas . 
CrumpetsOrToast 

I used ginger on Mellon ! 

So harsh to have two diagnosis on the one day like that . My lovely dad had dementia too .   You can only ever do what you’re able to do and I am sure your presence and love helps them loads . 

Take special care ,

Court 

That’s one aspect I have never thought about Katz51 .

Good point and I will try and remember that too .

take care ,

Court