In total despair

Hi and a very warm welcome to the online community

I'm so sorry to read how you feel at the moment. Can I ask is this because you have been diagnosed with cancer or because someone you know has been?

x

My husband. In June. Blood cancer. Incurable. We made the serious mistake of starting chemo..That has made things worse. He has been in hospital with a variety of serious problems relating to the cancer and is now bedridden and has lost masses of weight. 

I'm really sorry to read that and whilst my cancer was a different type I do understand how overwhelming this can all be.

As the online community is divided up into different support groups I'm going to recommend that you join the carers only group which is a safe and supportive place to share your feelings and worries and get support from others who have someone living with cancer.

To join just click on the link I've created and then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens. You can then introduce yourself and post in the same way as you did here and join in with existing conversations by clicking on 'reply'. 

We also have various blood cancer groups but I'm tagging my friend Thehighlander into my reply to you as he looks after those groups and will be better placed than me to suggest a suitable one for you to join.

When you feel up to it it would be good if you could pop something about your husband's diagnosis and treatment into your profile as it really helps others when answering or looking for someone with a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

If you have any difficulty navigating the community just drop me a reply and I'll be pleased to help.

x

Hi  and a second welcome to the community. I Mike Thehighlander and I help out around our blood cancer groups.

I was diagnosed way back in 1999 with a rare incurable but treatable type of skin Non Hodgkin’s Lymphoma Stage 4a and although my blood cancer ‘type’ may be different from your husbands I have experienced most types of treatments used but not necessarily the exact same drug mix along with the extreme challenges of these treatments.

What type of blood cancer dies he have as we do have some support groups covering the main types ((hugs))

Cannula failure. Blood everywhere. Nurse comes in. Spills urine bottle all over the bed. Each and every time I try to speak to my husband, some other person comes into the room.

Sorry to hear this , hospital wards are unfortunately chaotic and there is no privacy.

I have lost count for my cannula failures and blood everywhere - this is blood cancer for you.

What type of blood cancer does he have?

Terminal. MDS Excess blasts. It is a total disaster. 

Sorry to hear he has been diagnosed with MDS.

We do have a rare blood cancers group where there may be some folks with MDS or support family with MDS active. This is a link to the group MDS/MPN/ET/PV/myelofibrosis (MF)

Is he receiving any treatment or is it palliative care only?

((hugs))

Hello, very many thanks. He is on 6 cycles of chemo to try to stop it transforming into AML. One cycle down but currently too ill for the second, thanks to the damage the first cycle inflicted. I regret we agreed to chemo. Big, massive mistake. I don't trust the doctors anymore.

Hi again, I unfortunately know the challenges in having very strong chemo far to well.

My treatments were brutal at times and made me very very ill and I did land up in the Intensive Care Unit on two occasions. But these were all last role of the dice treatment, without going on the journey rney I would not be here talking with yo.

Looking on and seeing a loved one go through treatment is so hard and I have talked with my wife many times about what she had to watch me go through.

If you can’t trust the doctors who will you be able to trust? Stopping his MDS transforming into AML is so important and the only people who gave the knowledge and tools that can possibly do this are indeed the doctors.

Sending you supportive ((hugs))