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Dads first session of chemotherapy

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User
Posted 18 Apr 2016 at 15:38
Hi everyone,

Dad had his first chemo treatment on Friday. So far, he has no side effects apart from being extremely tired. He was tired before hand with the hormone treatment but I think he has hit a new level of tiredness now. My dad is still working full time and driving a lot with work has he is a sales manager. I do realise that this is what is keeping him busy and keeping his mind off things but I am really worried about him. Yesterday he said that he was so tired he could barely talk, yet he's got up this morning and gone to work. We live in Kent and he works in Essex so it's about a 45 min drive there and back. He is also planning on going to meet a client in Birmingham on Wednesday and staying overnight. This again worries me. I don't want to stop him doing what he wants and I think working is keeping him quite positive but he is ill and I'm worried he is doing too much especially now he is on chemo!

Any advice would be helpful.

Thanks,

Penny

"Some people care too much. I think it's called love." by A.A. Milne
User
Posted 17 May 2016 at 21:21
Hi Dawn, sorry your family is going through this.

When I had my first chemo Jan 2015 my subsequent white blood count was on the floor too. Next chemo was lower. In the meantime I was given some self administered injections to have to boost the white cell production by stimulating the marrow. Until then I had no pain. After the second injection I was in so much agony, it came in 5 second waves like contractions, I could not sit or lie down, my knuckles were white from gripping the chair. My temperature rose dangerously high so I went to a&e. They gave me morphine and pumped me full of antibiotics. The pain continued however for at least 3 hours and then suddenly stopped. Conclusion was that I reacted badly to the injections. From then on lower dose of chemo, then radiotherapy. After 3 months more a full MRI said , no visible signs of cancer, despite previously my lymphs being 7 times larger than normal due to the cancer. So I guess I am saying watch out for a bad reaction but the good news is that for me lower dose chemo still bashed the cancer.

I remain metastatic but hopefully this will have given me a bit more time.

I only have a desk job with a bit of localised travelling however I was off for the whole time as I wanted/ needed to do something for me when I had my better days, no point being a martyr for work ( unless you won't get paid) if you can create good memories at home.

Wish your dad only good reactions.

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 19 Apr 2016 at 05:15

hi penny I can see both sides to this, your dad wanting to carry on work I wanted to do the same whilst on my chemo but after a couple of sessions is was not possible due to the fatigue and I only work in a railway tkt office where I was told at any time just close window and have a rest, as I worked on my own, it wasn't just about me I thought how others where coping especially the family, none put any pressure on me

 

my boss at work offered to get me a reclining chair if I needed one at work for a lay down when needed

 

but as lynn says driving and being tired are not a good combo how much has dad told work re his fatigue, for as much as we want to continue a normal life, the normal life as it was has changed we have to find a new normal

it takes so much away from us a bit at a time but our familes are with us all the way along, and I do realise how hard it is for you trying to get dad to change things my daughter has and still is having the same with me

 

your support and the family and friends is cant think of the word but priceless does not get close, don't know of others on here but sometimes get a very selfish thought but then you think about the prior statement and the devastation of it

be as tolerant of dad as possible he may drive you up the wall at times, but he will always love you

 

regards

nidge 

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 27 Apr 2016 at 14:37

Hi Dawn
My husband had to have his chemo reduced by 20% on his 5th cycle as he use to have awful pain in his joints hip knees back you name it he had pain there he said sometimes it felt like he been hit with a hammer his painkillers he was prescribed took the edge off the pain but when it went from one place it would go to another
So on the reduction of 20% he still felt pain but not as intense they use to start at the weekend after chemo on the Wednesday
He as today just had his last chemo again with the reduction the oncologist said by reducing it it would make no difference to the treatment hope this helps a little
Yorkshire lass

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User
Posted 19 Apr 2016 at 00:29

Penny, if he is suffering that badly with fatigue, I am not sure he should be driving. If he was involved in an accident, the insurer could argue that he was not fit to drive. Also, his contract may include a requirment to notify the employer of any health issues that could affect his ability to drive on business - I know my husband's employer would treat this as a disciplinary offence.

As Thistle has said, the Equality act means that the employer must look to make reasonable adjustments (if possible) for someone in your dad's situation - they have a legal duty to keep him safe as well as others who work with him and the general public.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Apr 2016 at 05:15

hi penny I can see both sides to this, your dad wanting to carry on work I wanted to do the same whilst on my chemo but after a couple of sessions is was not possible due to the fatigue and I only work in a railway tkt office where I was told at any time just close window and have a rest, as I worked on my own, it wasn't just about me I thought how others where coping especially the family, none put any pressure on me

 

my boss at work offered to get me a reclining chair if I needed one at work for a lay down when needed

 

but as lynn says driving and being tired are not a good combo how much has dad told work re his fatigue, for as much as we want to continue a normal life, the normal life as it was has changed we have to find a new normal

it takes so much away from us a bit at a time but our familes are with us all the way along, and I do realise how hard it is for you trying to get dad to change things my daughter has and still is having the same with me

 

your support and the family and friends is cant think of the word but priceless does not get close, don't know of others on here but sometimes get a very selfish thought but then you think about the prior statement and the devastation of it

be as tolerant of dad as possible he may drive you up the wall at times, but he will always love you

 

regards

nidge 

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 19 Apr 2016 at 08:45
Dads work are aware of his diagnosis and that he has started chemo. Dad has a tendency to play things down as he doesn't want people to worry or treat him any differently. We have spoken to him about the fact that he is very tired and driving but as dad has always travelled with work, he thinks we are being over protective. The Macmillan nurses have said we should take dads lead in thousand I suppose that's all we can do.

My mum has asked him to work from home as much as he can next week as that's when his immune system will be low and he has said he will. It's just so hard. My dad is a get up and go type of person, he never really stops so I think he is finding it hard. When he's not doing anything, he has more time to think about everything and he doesn't like that. I have told him that his health is the most important thing at the moment and he needs to rest to keep him well so that he can cope with the chemo better. He seems to understand where I am coming from but then he's going into work and planning on going to Birmingham! I do despair of him sometimes, but then I remember that this is dad and the whole time he's like this, he's still strong!

"Some people care too much. I think it's called love." by A.A. Milne
User
Posted 19 Apr 2016 at 10:31

he will start to become more tired in the afternoon as the chemo sessions take affect, as your white and red blood count decreases
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 26 Apr 2016 at 16:19

Hi everyone, just wanted to give you an update on Dad and ask for some advice if that's ok. This is still all so new to us and I am trying not to drive you all mad with questions!

As my sister said, Dad's first Chemo was on 15 April and it all seemed to go well. Last Thursday he began to have a pain which he put down to a hernia he has (and has had for some time). The pain got worse and eventually early on Sunday morning they called an ambulance on the advise of the Macmillan nurses as it sounded like chest pains. The paramedics came and checked his heart, all was okay but given his condition they still wanted him to go to hospital.

When he initially arrived at hospital they thought it may be a blood clot on his lung or an infection as there was a shadow showing on the X-ray. They gave Dad antibiotics through a drip and fluids and he was admitted. We now known that his white blood cell count was almost 0.

On Monday Dad was told that it wasn't either an infection or a blood clot and the pain was from the cancer in his bones. He was given codeine and paracetomal for the pain. Yesterday was a very bad day for him. The chemo nurse explained how ill he had been when he was admitted.

Thankfully, he is much better today and is coming home. His white blood cell count is up to 3.1.

And now my questions............

One of our main concerns at the moment is the pain from the cancer in the bones - he says it feels much better today but is this the painkillers or in your experience, can it come and go? 

Do you think the pain could be linked to the low white blood cells?

The hospital have suggested that the chemo dose may be reduced for his next session and that it can be reduced by as much as 30% without having any lesser effect - have any of you experienced this?

Dad felt reasonably well immediately after his chemo, he was exhausted on day 3 but after this he said he felt ok and carried on going to work - could this have contributed to his recent problems that led him to be admitted?

I think that's all for now but as ever, thank you all I don't know what we would do without this site,

Love always

Dawn x   

User
Posted 27 Apr 2016 at 14:37

Hi Dawn
My husband had to have his chemo reduced by 20% on his 5th cycle as he use to have awful pain in his joints hip knees back you name it he had pain there he said sometimes it felt like he been hit with a hammer his painkillers he was prescribed took the edge off the pain but when it went from one place it would go to another
So on the reduction of 20% he still felt pain but not as intense they use to start at the weekend after chemo on the Wednesday
He as today just had his last chemo again with the reduction the oncologist said by reducing it it would make no difference to the treatment hope this helps a little
Yorkshire lass

User
Posted 17 May 2016 at 10:50

Hi all, just a quick update on Dad and a request for more advice (sorry!) 

Dad had his 2nd Chemo on 6 May and was admitted back into hospital yesterday. Much the same symptoms as last time but this time he was violently sick too. The oncologist decided to leave the dose as it was after the first session as it could have been a one off - probably not given the events of the last 24 hours. 

So my question is, I've heard that there is an injection that can be given to those who have a bad reaction to chemo before the chemo, possibly to boost white blood cells? He does take a high dose of steroid just before the chemo  - could this be the same thing.

And just one more question, my sister and I are worried about the spread to soft organs, I assume the hospital will be checking this but is there anything we need to look out for?

Thanks again

Dawn xxx 

User
Posted 17 May 2016 at 21:21
Hi Dawn, sorry your family is going through this.

When I had my first chemo Jan 2015 my subsequent white blood count was on the floor too. Next chemo was lower. In the meantime I was given some self administered injections to have to boost the white cell production by stimulating the marrow. Until then I had no pain. After the second injection I was in so much agony, it came in 5 second waves like contractions, I could not sit or lie down, my knuckles were white from gripping the chair. My temperature rose dangerously high so I went to a&e. They gave me morphine and pumped me full of antibiotics. The pain continued however for at least 3 hours and then suddenly stopped. Conclusion was that I reacted badly to the injections. From then on lower dose of chemo, then radiotherapy. After 3 months more a full MRI said , no visible signs of cancer, despite previously my lymphs being 7 times larger than normal due to the cancer. So I guess I am saying watch out for a bad reaction but the good news is that for me lower dose chemo still bashed the cancer.

I remain metastatic but hopefully this will have given me a bit more time.

I only have a desk job with a bit of localised travelling however I was off for the whole time as I wanted/ needed to do something for me when I had my better days, no point being a martyr for work ( unless you won't get paid) if you can create good memories at home.

Wish your dad only good reactions.

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 18 May 2016 at 18:55

Thanks Kev, that's really useful information, I wish you all the best too
Take care
Dawn x

User
Posted 19 May 2016 at 12:18

Hi Dawn, just a little warning about the white blood cell boosting injections, mine was Filgrastim for 5 days after my first chemo last week, and after the second one I got a terrible sickly sinus type headache. This side effect is listed as common on the information with the injections but not told to me by the chemo nurse. After ringing the helpline I got to see my GP who prescribed painkillers and now I know what is going on I can control the sickly headaches.

Best of luck to your Dad.

 
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