Advice for a Carer

Hi ,

Welcome to the forum . Your wife is having such a rough time and I  can say that would be very similar to my mum’s experience. I would throughly recommend contacting her specialist nurse to make it very clear the full extent of her situation . My mum had the throat spasms as the third cycle they gave her a much slower infusion over six hours . That assisted greatly with that one . However the first year she laboured through trying to endure it all . The second year she exactly the same combination of chemo but her oncologist reduced her dose by ten percent and infused it overnight with her legs up the entire time . It greatly reduced the side effects and although just a small reduction seemed to be at a more tolerable dose for her .

I am not sure if any adjustments have been made with your wife but it can take a few cycles to find the balance . I think in a stage 4 setting it’s important for the oncologist to know to let them have a longer focus on getting this right . 
I would say she did have a fantastic response despite it all . It’s also not easy watching someone you love go through this and trying to find ways to lessen the impact so my thoughts are also with you .

You might like to contact our helpline at any point . 0808 808 0000 they are always there to help and have access to a lot of experience from the Macmillan nurses . 
Take care ,

Court 

Thanks for replying Court. I have been contacting the online support but was wanting to get some advice from people who are fighting this terrible illness and their carers so see what their thoughts and experiences were.

That’s a great idea . I too found it very helpful to see how others manage things . It really does help !

Has she had her dose altered at all ? 
Take care ,

Court 

Hi Mr Mac, sorry to hear about your wife's experience, it's so difficult to watch your loved ones going through this. I would definitely contact your wife's team and let them know as they will be able to help. My husband's had 12 cycles of folfoxiri and Avastin, it's been a tough regime but the results so far have been better than we could have hoped for. We learnt early on from forums like this, to avoid anything cold in the first few days after chemo, I even warm up fruit juice, not quite so nice as a nice chilled glass but it gets him through. He also wears gloves everytime he goes out along with a scarf in those days immediately after treatment and then the tingly sensation subsides, always there in the background so he's banned from the freezer! Take good care, love Frances xxx 

Dear Mr Mac

So sorry to hear about your wife. I do feel for you both, and I also think that what you are going through is absolutely normal. I have just finished 4 cycles of Oxaliplatin and Capecitabine, and for the first couple of cycles I had horrible side effects, much the same as your wife. I agree with Court - she must let her oncologist know. Mine reduced the dosage of either the infusion or the tablets for every cycle, and by the fourth cycle I had no side effects other than reacting badly to cold. Even the lurching form constipation to diarrhoea settled down.   I cried on the drive to hospital for each infusion, I really did not want to go.  I spent most of the first 7-10 days of each cycle dozing in my favourite armchair. My husband looked after me by bringing me hot water bottles and a flask of warm water to drink, to help with the reaction to cold. I echo what Frances said - your wife must wear gloves! I wore mine all the time for the first week. If I wasn’t wearing them then dipping my hands in warm water provided instant relief. I coped better with the throat spasms when I realised they were actually in my voice box, so slow calm breaths and not talking helped enormously. And I wore a scarf indoors.  As for feeling depressed - your wife needs reassurance that this is completely normal. We have all been there. I was always at my lowest about 4-5 days in -  and someone told me it was because I was coming down after the four days of steroids. That helped me see that, although I was unhappy and tearful, some of it was actually a chemical reaction in my brain. 
Now I am at the other end and my post-chemo scan showed an excellent response to the chemo - so it was all worth it! I wish the same for your wife. 
Good luck and best wishes to you both xx

PS the odd bunch of flowers also cheered me up! 

Hi Court. They were considering giving her a picc line as she had a really bad reaction while getting her chemo the last time however, the Doctor has now said that they will try reducing the amount she gets to see how that goes.

Thanks

Mr Mac

Thanks Frances. So glad that things have been positive for you and your husband. I have taken your advice onboard. It's definitely been a learning curve. xx  

Thanks for that advice Veggie Lady. It's good to know about other people's experiences re their chemo side effects, especially as they are so similar to my wife's. They were going to insert a picc line due to the bad reaction she took while getting her chemo at the Beatson the last time but the Doctor has said they will try reducing the amount she gets both in the hospital and with her tablets. The replies I have had has given me a wee bit of optimism and I just hope and pray my wife has a similar outcome.

Thanks and take care  x

Oh, and I will remember the flowers lol xx

Ha. Good on you that will cheer her up !

If you like you can click on my username and read my mum’s journey with a stage 4 diagnosis. She was at the Beatson too and their clinical judgments have been great . The oncologists work really hard to keep patients needs central despite a lot of patients passing through the system.  They will take good care of her .

Take care ,

Court