Pretty rough week from my side. My wife miscarried on Monday, so been a hard time this month to be honest, but getting through it. That on top of Dad’s diagnosis and job being at risk - it’s been heavy. Sleep doesn’t come easy, but I think it’ll ease in time.
Dad’s chemo seems to be going well - he’s having his third round (third week of chemo) and he’s in good spirits. Everyone seems to be holding up now we’re over the initial shock of everything.
Oh @MazB I am so sorry to hear that your wife miscarried on Monday, I expect it is such an emotional time for your both, my thoughts are with your both.
You must feel torn in all directions, you have a lot on your plate emotionally, physically and practically.
I am glad that your dad’s chemo seems to be going well.
But you also have the worry about the future of your job.
Also lack of sleep cannot be helping, I know I do not function well if I am not sleeping.
Do you think your GP might be of any assistance?
They might also be able to suggest other therapies for you and perhaps your wife, if she feels it is for her.
I believe I gave you a link to the Blood Cancer UK support above.
The main thing is that you really look after yourselves and be ever so kind to yourselves
Please do keep posting how you all are.
I’m so very sorry to hear what happened on Monday and send you and your wife my sincere condolences. I hope both of you will get good support with all these different pressures coming at once. Thank you for sharing the encouraging news that your Dad’s chemo is going well and that he is in good spirits. Thinking of you today.
Definitely been unexpected and difficult but appreciate nobody has it easy, suppose everything has just come at once.
I try to avoid the GP as I know how busy they are with people. I’ve been trying to keep my mind busy in other ways, and I think it’ll get easier soon, I hope so.
You gave lots of great resources that have been of great help. Thank you again for that.
Hope to check in again one day soon with some better news.
In a way everything is just numb right now. I’m really looking forward to a peaceful moment in the future. Hope to try and take my wife somewhere for a couple of days if my job remains safe, she deserves it after everything.
Hi @MazB I think your GP is there for you and your family as much as anyone.
Perhaps you and your wife both need a couple of days away for yourselves, if your job remains safe.
Be ever so kind to yourselves
We’re doing ok thank you. She’s doing better this week - was a rough few weeks but we spoke in depth and hopefully it helped, it seems to have.
Am looking forward to a period in time where we can rest a little easier away from the anxiety - but maybe that’s just life in general. Who knows!
Dad’s chemo has caught up with him. He’s now quite frail, weak and fatigued. Part of it all though - seems very real now. Still can’t believe this journey started a month ago already.
@SueM I’ve been thinking of you. How are you and your family doing?
Sat up, struggling to sleep (an overactive mind). Reading this forum and all of the amazing stories and support is great (emotional, but great).
I spent the day with dad on Saturday so that mum (his main carer) could go and get my sister her prom dress. It was nice to spend time together, but hit me how fragile he was - he’s losing a lot of muscle and the fatigue has caught him. I’m told his platelets are back up (above 500) if that means anything to anyone? And will continue intravenous chemo closer to home. He’s so positive about everything, but I think the lack of activity is getting to him - normal I guess.
I wanted to say thank you everyone on this forum. In the first days since dad’s diagnosis, and since with my wife’s miscarriage and my job being at risk - you’ve all helped me cope with some of the emotions. As soon as I have confirmation on any job, I will be donating my first month’s salary to this charity and Anthony Nolan.
Being brutally honest, dark and difficult thoughts crossed my mind this month with the pressure, but speaking to people like all of you has helped pull me back.
If anyone else reading this post is considering the worst, or going through something bad, I truly believe better days are coming.
I needed this positivity today @MazB so thank you for taking the time to post such true and thoughtful words. These are dark, sad and challenging days for sure but, together, we share that weight and pressure and you’re right, it does help. My dad was admitted to the palliative care ward last week so the thought of better days for him and us means much. You take care of you too
I’m so sorry to hear you’re experiencing tough times as well. I am sending my love to you, your dad and your whole family.
How are you doing personally?
I think the only thing to physically believe is that the universe is here to test us. Tests are meant to be passed and sometimes life isn’t as simple or as planned out as we want it to be.
Thank you so much for asking, especially with everything you are going through at the moment.
There was nothing much to report but my dad has finally had his appointment with the consultant and it is slightly better news. His platelets have come down so we now know for certain that he is now on watch & wait and will not need to start treatment in the short term. His intense itching has also calmed down a bit which could be due to the medication he is currently taking and the fact that his anxiety has lessened. He has also started to gain a little weight which makes him look a bit better too.
I think my dad has started to understand what all this means and the fact that he is on watch and wait, rather than having to start intense treatment will give him and the rest of the family a chance to learn a bit more about it all and what may be ahead.
I am so sorry this was so different for you and your family, but the way your dad is remaining so positive is inspirational and I really hope you can draw some strength from that.
What this week has shown me is that good news can happen but that worry does not go away. It now feels like a bit of a ticking time bomb that could go off at anytime and there is absolutely nothing that can be done to diffuse it. We just have to take every blood test as it comes and try to stay positive. (Not easy for me as I am a worrier!)
I hope your dad’s treatment goes well and he can get a bit more active soon. I know that is definitely something that would get my dad down. He has already had to slow down a bit and that has been tough for him so I can only imagine how hard it is for your dad currently.
I also hope your wife is doing okay and you get some good news about a job soon.
We are all so lucky to have this forum and the contact with others going through similar situations. It has made such a difference to me and they way I have been able to process this diagnosis.
I know we are all in this for the long haul but the journey will be so much easier with the support of each other.
Hi @MazB you are doing so well after what life has thrown at you and your family
Thanks so much for being brutally honest and I expect many of us have also had dark and difficult thoughts, for me it is when I first try to get off to sleep and then the darkest hour is just before dawn (as the song says),
Be ever so kind to yourselves and please keep posting as I am learning so much about myself from you.
Oh @SueM I thank my lucky stars that I am on watch and wait every day, long may it last.
I think most of us are worriers and human.
Just make the most of every day, it is all any of us can do.
And keep positing and be kind to yourselves
I’m so glad your dad is doing better. I know it’s been such a huge period of change for all of you, and I really do think you should be proud about how you’ve dealt with it. I know it isn’t easy.
Thanks again for the kind words, does mean a lot. It’s quite lonely at the moment - find myself isolating away from people, or getting paranoid that they’re doing it to me - so it does mean a lot.
Dad has started intensive chemo today (he’ll be doing it 5 days a week for the next 4 weeks) - and then he’ll be onto a bone marrow transplant. He’s very nervous (it’s got to him now), and so is mum as his carer. I think the reality of the disease really is hitting home as it’s physically seen now.
Do you know anyone else that has been through ALL treatment and come out the other side?
I’m not 100% sure on names (Mum hasn’t been too forthcoming with details as I think she’s scared) and Dad struggles with his energy, I don’t like to ask him much to be honest.
All I know is that he has the Philadelphia variant. He’s on tablets for that, and had some rounds of intravenous chemo. Once a week at first, he was technically labelled “in remission” but is now starting intensive chemotherapy 5 days a week for the next 4 weeks. He told me yesterday that Monday’s will be bad because he has to have some kind of cap?
Hi @MazB yes, you really are doing brilliantly and it must feel lonely, but you have your forum family here.
I am so glad that you are able to talk about the thoughts and feelings you are having, I think that it is so important.
Is there anyone on our forum with ALL who could respond to @MazB?
Don’t forget if you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888
Please keep posting how you and your family are doing and look after yourselves
First just want to say thank you to everyone who has taken the time to reassure me, listen, and reply. Publicly and privately. It means a lot and you helped me through dark days.
On Dad’s status - he has just returned home after a 2 week stint in hospital due to a nasty infection. He’s feeling good at the moment as he’s put some weight back on and his platelets are back up etc.
I understand he’s got two more chemo rounds (4 over night stays x2). Apparently this is the worst of it to come, so hopefully he’s going to do ok. After that, it’ll be onto a transplant - which he’s hoping to complete in May or June (I believe). Not 100% on the specifics of the drugs as I don’t get much detail from mum (still has her head in the sand).
It’s strange - sometimes I forget he’s suffering with ALL, and he’s just normal dad, and others it hits me. Now it’s spring I’m tending to his garden on my days off, de-weeding, and doing the lawn (although not to his standards)! I never thought cutting my parents lawn would make me sad and scared - just a reminder of the situation I think!
Not 100% what the future holds for him, but when we catch up he’s always talking positively and about his plans for retirement when he’s through it all.
From my point of view - mental health has improved. I found out I kept my job, which is a huge relief. I donated what I could to charity this month and will continue to do so.
Life’s short and it’s given me a new perspective on it all.