How to manage/ watch for deterioration

Hi Charlotte33,

Thank you again for your response.  Your message help me keep on going.  I am so sorry you are at such a difficult time.  Reading your message to Crispy55, I now understand a bit about your husband’s cancer.  Terminal cancer is devastating and traumatic for all.  Reading about your husband’s stubbornness and determination, even the denial, is the same as I see with my husband.  My husband won’t give up.  If he has to crawl, he will crawl.  If he falls, he struggles and will get himself up again.

My husband was diagnosed with Myeloid Dysplastic Syndrome in August 2022.  His bone marrow is not making red and white blood cells or platelets; thus, he is subject to shortness of breath (low rbc), infection (low wbc), and/or bleeding (low platelets).  He held stable for the good part of a year; then there was a noticeable decline in his blood cell values.  A number of months ago, he had a second bone marrow biopsy which revealed increased blast cells (immature, undeveloped blood cells), and thus, the progression of the disease to Acute Myeloid Leukaemia.  The doctor said we were talking months in terms of prognosis, not years.

Clearly he has slowed.  Everyday, simple activities are much more difficult.  He snoozes and naps a lot more and is unable to walk as much as he would like to.  Again, as you know, it is so difficult to watch your loved one suffer and decline as a result of illness/cancer.

He also suffers excruciating pain from severe arthritis in right knee/hip.  It was in fact, planned surgery for hip replacement that revealed the low white blood cell count, thus canceling surgery, thus taking another 7 months to figure that he might have bone marrow problem.  Nonetheless, he continues to do the best he can to get out, to look at nature, to watch birds.  For him, it is hard.  He had 24 year military history. He was fit and extremely capable.  Now he has to deal with his body deteriorating.

He refuses hospital or extreme measures to try to prolong his life.  I support him in his desires to keep it simple and natural.  He wants to die at home.  I will make sure he stays at home.  His doctors understand his wishes and respect them.  If I/we need extra help, then I expect we can get day visits from medical professionals and/or hospice.  I’m pretty much on my own with this as there is little family and I have virtually no friends.  I accept it, however.  I will do my best to support him and treat him with dignity, to make sure he is as comfortable as possible.

Sorry to vent so much (this sort of helps me to organize, accept my situation).

We did get out to our birding spot for lunch and watched (and I even finally photographed) the birds.  Then he was content to sit in car for a while while I got out and walked a while (something I enjoy and helps me).  Just before I reached our car, I saw a Treecreeper climbing the trunk of the tree.  I hoped it would have been visible to Dave in the short distance to car (sadly not, for him).  Birding and nature are such an important aspect of our life.  I say that birding has saved my life, turned it around.

We’re back home; he is resting but reading his iPad while I’m here on my iPad.

Of course we have no idea how long we will be able to keep on doing the things we like to do.  As I mentioned before, meeting with the funeral director (a nice and understand, helpful woman … the one who told us about our “lunch” birding site).  It is truly a relief to have some of these necessities worked out as there are legal requirements.  We were able to discuss and note his desires … everything very simple and natural … no fancy clothes, just jeans and t-shirt (same thing as our wedding attire years ago).  He will be interred next to his parents.  I understand the necessary steps I need to take in that eventuality, though I hope it is a long time off.

Again, sorry for rambling … read and respond at your leisure.

It seems that. You are understandably with your husband in hospital.  I hope that you will have a bit of time with your daughter too … whatever is appropriate or workable.  As always, you are in my thoughts.  Further, I appreciate the others who have responded to your messages.  Sadly there are a number of us who struggle with similar issues.

Oh goodness, this is a lot and it must be especially hard for him with his military career as you say - having always been able to rely on the strength of his body and to have them at disappear must feel like losing an identity. I feel for you both.

It sounds like you have been able to make some really practical preparations which although can’t be nice will be helpful and ease some of the stress when the time comes. 

Sadly things are not going well here and his Dr has today indicated a few weeks, possibly a week. It is hard to swallow. I had a cry earlier and my beautiful nearly 4 year old daughter was comforting me and we had a big cuddle on the sofa talking about Daddy. I’ll be taking her in to see him tomorrow. I don’t know how I get through this next bit x

Oh dear, Charlotte33!

Indeed what dreadful news you got from doctor.  The emotional trauma is mind boggling.  What a special, strong, and inciteful daughter you have.  It seems that perhaps you can keep each other going along with comforting each other.  You do have so much to process.  Of course it is natural and understandable to wonder how you can get through this, though I expect you will.  Although it is seeing your husband will bring up lots of emotions, I expect it will be a good and important experience for both you and your daughter … as well as for your husband.

We had been away and I just very recently arrived home after driving 360 miles today.  I am shattered.  My husband’s kidney function has decreased.  They have been doing blood tests; now he will have renal ultrasound this coming week, along with blood test on Monday and haematologist consult on Wednesday.  Then on top of that, I am scheduled for hip replacement surgery in 11 days, though no letter yet.

As always, lots of love and hugs.  You are so strong.

Hi Charlotte, I'm so, so sorry to hear of your news today. It must feel very surreal right now... And unfair. I don't know how anyone gets through this next bit, but somehow you will find the strength and look back on this period and wonder where it possibly came from.

Someone told me that when I was going through the final weeks with my Mum and I took strength from that piece of advice... So I just wanted to share it with you in the hope that you do too. 

Sending you so much love. Xx

Charlotte33,

You are in my thoughts … how are you managing?  Have you and your daughter had time with your husband.  When you can, let me know how you are doing.  My husband not doing so well all all, but he’s now resting quietly in bed.

XOXO

Love, strength, and lots of hugs.

Thank you so much for such lovely words  xx

Thank you so much. The day was difficult but needed. They gave him a sedative at 3pm to help him rest as he was getting very anxious with his breathing and not being able to get enough air. Just trying to take an hour at a time at the moment. Glad he is resting now. How will you manage when you have the hip operation? Xx

Glad that you and daughter were with your husband, as difficult as it was.  Good that he is getting good support.  As for my operation, I‘m not sure.  If I don‘t hear anything tomorrow morning, I will phone them in the afternoon.  Dave‘s son can stop by during day. Maybe I should ask about visiting nurses or something … then again, not sure how that could work.  Take care.  I hope you get some good rest tonight. XO

Thank you so much and good luck xx

Good Morning, Charlotte33.  I hope you had some decent rest last night … along with lots of hugs and cuddles with your daughter.  

Well I have now determined that surgery won‘t be a problem.  They cancelled it … due to shortage of beds with winter pressures soi they had to give the slots to other people who had had their surgeries cancelled.  In truth, cancellation is a bit of a relief as I am more concerned for my husband.

At least he was able to get up this morning … did a „“bird bath“ and even dressed self!  Very little appetite or energy.

As always, you are in my thoughts.  Lots of love and warm hugs.