Hi I am so happy to finally get onto this community, it means such a lot. My Dad was diagnosed with non hodgkin's Lymphoma high grade about two weeks ago after two months of him falling ill suddenly. He is 81 years old and before this happened, was the an extremely active man, walking, doing his garden, doing his chores, a big bloke, that's my Dad. Suddenly he fell ill, all of a sudden. I find it hard to get my head around, how something so aggressive can suddenly happen at this stage in his life. He has lost alot of weight, and is pretty much house bound apart from appointments.
He decided to have the chemotherapy and had his first session last Thursday. All went well, it wasn't as daunting as he thought, and we are a week on. He is just now extremely tired. I have been sorting his medication, and that has pretty much finished now, what we were advised. Apart from, his injections start tomorrow for five days and bone tablets every week.
His voice has become extremely hoarse, which i looked up and knew this was a side effect. So he is pretty much whispering now. I wondered if there is anything we can do to help this? I have asked if his throat is sore and he said it is a little bit, and i wondered if there is anything we can do to help ease that a bit. My Dad has always been this big guy, and he has so much pride, so for him to ask for help will be like pulling teeth. Me and my sister go up every morning before work, and usually he is already up and having his breakfast, so he is moving about and able to. We both go after work also, to sort his tea, medication and just make sure he is ok. He always says he is not ready for home help as yet, i was told to always let my Dad listen to his body, and i am sure he will tell us when he feels the time is right. Like i said, he is a proud man, but i don't want him to struggle.
I go after work, do any shopping, sit with him, but today he was very tired, and irritable, i try to make him laugh, he will get annoyed at first but then laugh, its very hard to gage his mood, i wonder what to do for the best. I want to support and help him anyway i can, just would really like so advice on what to expect, 7 days after first chemotherapy. He has his next on the 18th of July.
Thank you all for listening, any advice would be gratefully appreciated, xxxxxx
Hi again SMALL STEPS and well done navigating across to the group but sorry to hear about your dad.
At 81 your dad is in the more senior category for going through treatment but over my years in here there have been lots of people the same age go through treatment and went on to do well.
Make sure that you take the injections out of the fridge for a good 30mins to allow then to get to room temperature…… one side effect is significant bone pain as the bone marrow goes into over time rebuilding his immune system…… apart from paracetamol the other thing I was given to take was antihistamines as surprisingly this reduced the pain.
Mouth issues can happen so make sure he is using something like Difflam regularly but the one thing that helped a lot was fresh pineapple blitzed, put in ice cube trays and frozen and to suck on these regularly….. lots of ice lollies help as well.
These are some of my simple tips.
Nausea may be a challenge, but remember he must not to suffer in silence as there are lots of tools available - but his team need to know how he is getting on as at times it is trial and error to get the right one. I was only sick once during my 750+ hrs of main chemo and this was down to a bad food choice…… I just wanted some takeaway food….. believe me it’s not a good idea.
Cancer-related fatigue may well build up over time so take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue..... the less he does the longer the recovery.
There is a real Risk of infection so care needs to be taken to control infection contacts. Generally it takes about 48 to 72 hours for the body to break down and/or get rid of most chemo drugs.
But the effects of the chemo on growth areas and his general immune system will last for weeks and is important to remember that he may well be more open to infections at about days 7-14 as this tends to be the window when his immune system is at its lowest……. then the body recovers in time for the next cycle….. but the more chemo he has the longer the recovery can take so by the end of treatment it could take a few months this to recover completely.
I was given this simple rule for keeping eye on infections…… If my temperature is 37.5°C, repeat in one hour. If my temperature has increased, whether I feel unwell or not, I must contact the hospital.
I would also highlight the importance of drinking lots of water (the aim is 2 litres every day) as this will flush out all the toxins released by the chemo, protects the kidneys and keeps him well hydrated.
It is VERY important to have accurate contact information/names/numbers for reporting in issues especially during out of hours and weekends.
There is no need to be a hermit….. you can go out. I would meet up with friends in a quiet corner of a garden centre….. fresher is a good healer……. The main thing is check that folks visiting you at home are not carrying a bug…. coughing, sneezing etc….. and open the windows and let some fresh air in,
Do you know the exact type of High-grade non-Hodgkin lymphoma he has?
What is the exact name of the treatment regime he is having.
I have said enough but do get back to me with any specific questiins you have.
Hi Thehighlander
Thankyou so much for your reply and in depth reply, it has really helped. I went to my Dads early this morning and he was struggling as he felt he wasn't urinating properly and had tummy aches. He was up and down every 10 minutes with only dribbles and was exhausted as he'd been up alnight. So I rang a doctor who then gave me a call back. He's had a few water infections since his illness began. On advice I rang the cancer team to make them aware and ask if anti biotics for a water infection are ok. They were amazing, first time I've had to ring. I took his temperature which was 36.8, they said that was fine. And no problems to take the antibiotics if prescribed..
I took the day off work as he was retaining alot of water, and has had a Catheter fitted for a few days, to see how he gets on, it will definitely help him while the antibiotics kick in and hopefully clear infection as he will get proper sleep at night.
I did his first injection tonight, I was a bit scared but when I took it out the packet ( after washing hands and anti bacterial hand gel) I was happy to see it was like the one I had after my hyst
ectomy, so I definitely knew how to do them . He was very low today, saying didn't want to do another round of chemotherapy as he is just so tired, but I'm hoping it's just because he was exhausted om the water infection and constantly getting up. Hoping he has a really good sleep tonight. I was wanting to ask if you had any advice when my Dad feels low like that, and wants to give up
Infections and fatigue are not good partners and it definitely has a negative effect of the ability to push through and keep going….. let’s look for the antibiotics to do the job and let’s look for things to change ((hugs))
