I'm so tired of feeling sad

Hi Hattie812 yes to all that. My partner was diagnosed in October 2021, and as you put it so well, there's only one outcome - but we don't know what the journey will be. He's just at the end of 6 cycles of chemo, and as I write this (mid-afternoon) he's sleeping. I try really hard not to think about 'what might have been' and focus on the joys as much as sadness - but it's not easy. Things aren't terrible for us at the moment but sometimes I can't help wanting it all to go away and have a break from it all. Just wanted to say what you wrote resonated with me. Thank you, and sending a virtual hug x

Thank you so much LovingHeart 

I count my blessings every day. Hubby has outlived his original prognosis and I'm beyond grateful for that, but.....

Things aren't hideous for us either,  but hubby being one of those for whom the Covid vaccines dont work, has seriously curtailed our 'making memories' opportunities. We make the most we can of each day but there is a tinge of sadness which hangs over us all the time.I totally recognise that feeling of wanting to get away from it all, too. Sending hugs  your way. x

Hi Hattie. You sound so much like me! My husband has leukaemia and we have had a similar journey over the last 18 months and the same expected outcome. I know all about sitting in hospital canteens and coffee shops, and the park next door to the hospital while he has treatments. He has also had a 6 week admission with sepsis. He's going through a pretty good patch at the moment, but results are starting to dip so we know things are going to ramp up again soon. As you say, its sad thinking about the life we should be living, combined with knowing what we have to face in the not too distant future which clouds enjoying everyday things, I feel really guilty if I take any time for myself or do something I enjoy, even though he tells me to do things, as I think we should be enjoying more things together. I don't think there is any solution, we can only support them as much as possible, and make sure we enjoy the good times together as much as we can 

Hi MinnieMouse123

I've just looked at your profile and see that your husband is also on Azacitidine, so you definitely  know where I'm coming from!

My hubby is just starting to have his on a six week cycle rather than four as his neutrophils just keep dropping and his Hb was starting to drop too. I'm just keeping everything  crossed that this works for him and that he gets some decent quality of life for a while.

I so identify with that feeling of knowing that things will ramp up again sometime soon. It feels like constantly "waiting for the other shoe to drop," as my mother would have said - and I hate it!!

Like your husband, mine is always urging me to do all the things I used to do, but with his immunity so compromised,  I just daren't and that frustrates him beyond words.

Sending understanding  hugs your way. 

My husband was on azacitidine for 8 months, but had to stop it as it was supressing his bone marrow too much and he was constantly needing transfusions. He hasn't had any treatment since the end of March. At the time his leukaemia cells were low, and he's been pretty good since. His results improved and he feels better for not being on chemo. They've recently started to go down a bit, so it's likely he will be back on something soon. 

I hope the 6 week cycle works better for your hubby. 

Sending hugs back.

This is all new to me. My husband was diagnosed 12 days ago 16th November.  So far, all he has been given is blood transfusions. We do have a 2nd appointment with the haematology team in abou10 days' time. I'm hoping they can give him ethropoietin  injections as well. He already has an incurable brain cancer that was diagnosed in March of this year after debulking surgery to remove the tumour. It's the worst kind glioblastoma multiforme. They had to stop treatment for that only after day 2 of the first cycle due to huge allergic reaction. Our lives now revolve around hospital appointments and regular blood tests at our local doctor's surgery, and transfusions. Oh, and the odd appointment to dermatology. He has said that if he knew then what he knows now, he wouldn't have gone down this road. Hindsight is a wonderful thing. But the reality is he would have been dead now. Myself and our children, and other family are not ready to let him go just yet. 

L8girl57 you really are going through it aren't you? Myelodysplasia  is an added stress for all of you, but it may be manageable. How they treat it will depend on the 'Risk' level and any cytogenetic changes in the bone marrow. Has he had a bone marrow biopsy?

Have you accessed the MDS UK Web site? There's heaps of information that may be useful to you and if you sign up as a member of the MDS UK Patient Support Group you will get literature sent in the post as well. 

There's also a group on here under 'other cancers,' as well.

Good luck with the Haematology appointment. Let us know how it goes. If you post here and tag me, that will ensure I don't miss your post!

Send a heaps if virtual hugs your way. x

Hello Lovingheart!

I really do get what you are going through as I am going through the same with my husband. We got the news several weeks ago that his bowel cancer had spread to his pelvis, and we are absolutely devastated. He was put on CAPOX chemo but mid-way through the 4th cycle he became ill and they stopped it. We went back last week to the oncologist, and he has said they don't know if he will be fit enough to go back on any type of chemo. They are looking to put him on low dose 5FU if they think he can tolerate it (fingers crossed). He has just gone into a deep depression and like your partner sleeps a good bit. His cancer came back in May this year after his operation to remove the tumour in January. I too am so angry of what we should be doing now together as a couple. He only retired 3 years ago and since then it has been nothing but health problems for him. First of all, he was diagnosed with Type 2 Diabetes which we were able to work on but covid put a stop to that by closing down our local sports centre etc where we were going to use the gym etc and then at the end of 2020 the cancer issues began to surface and as far as his surgeon says the tumour had been dormant for 4 years without showing any symptoms at all. It's just so unfair and then you're asking that cliche of `why me/us` we're good people who live by the law etc and you get villains and low-lifes who are walking the streets without a care or respect for anyone and nothing happens to them. Not fair at all!

Hattie812 My husband was offered a bone marrow biopsy, but he'd had enough at that point. He was in hospital 8 days because of his Hb down to 38 and an infection somewhere in his body. He had about 5 units of blood with several blood tests throughout. All he wanted to do was to get home. His weight had plummeted down to 8 st 8lbs and for a 5ft 10, 66 yr old, that was incredibly low, he used to be over 11stones. When we went to see the haematology Doc she said it was OK not to have the bone marrow biopsy and aspiration if he wasn't keen. So, he chose not to have the test done. Dr said outcome would be the same - just manage his symptoms and support him. Their reasoning is that his prognosis not great anyway, so just do what they can. His MRI scan is on Monday to see if the brain tumour has started regrowing yet, next hemo appt Tuesday, still waiting for 3-month oncology review. 

So many of my friends say I am coping so well. It seems I've always been looking after someone!! I looked after my mother for eight years, she lived with us as she had dementia. She died in 2019. I started doing agency work working in care homes. Then at the start of covid I became a home care worker. I loved the job. Then my daughter and two grandchildren moved from Wales to live with us July last year as she needed more help. It was tough for her in Wales, a single mum for over 4 years with no support, and the oldest is autistic. Then, mid-May I got sciatica and was on the sick for 6 weeks. I just had to give the job up. Too much to deal with.  My husband has been so ill and I've turned to comfort eating. I've put on 2 stones and have been on the weight watchers' prediabetes programme, but I just can't lose any weight. So, no not really coping, just trying to get through this one day at a time.

L8girl57 one day at a time is the only way to do this, I think.

I totally understand  why your husband wouldn't want a bone marrow biopsy. They are not the nicest experience - not that I've ever had one, but as a retired nurse, I've been on 'the other side' so to speak, and my husband's descriptions certainly confirm my thoughts about them.  With everything else you are both coping with, I think your Haematologist gave  the right advice.

You have had so much to cope with. I'm full of admiration for you and I'm sad that you've had to give up the job you loved so much. Home carers are so undervalued good ones who love their job are so desperately needed.

I am with you on the comfort eating. I'd  just lost 3 stone (much needed!) when hubby got his diagnosis, and I've put almost all of it back on now. My focus is so fixed on helping and supporting  my husband that everything else takes a back seat.

It sometimes feels as though some people get more than their fair share of difficult situations and you've certainly had a few. In my early twenties I gave up work to care for my dad, who had prostate and bladder cancer. I cared for my late husband who had pancreatic cancer, and now, here I am again! It is so helpful to have somewhere like this, to find others who understand  what being in this situation is like.

That's enough about me!!

Good luck with the appointments next week. Let us know how it all goes. Sending hugs. x