Very frightened and feeling very alone

First of all, breathe.

Your husband's team has decided that the risk of attending hospital for the injections is less than the risk of him not having those injections, and they will do everything possible to ensure that he is at the hospital for the shortest possible time and encounters as few people as possible.

I'm in the extremely vulnerable group and I do still see my children occasionally. Providing support to sick or elderly family members is an acceptable reason for leaving home here.  It is something of a production,  but two of my children are nurses so the benefit outweighs the inconvenience of enhanced infection control measures.

Oncology and haematology units generally have counsellors available.  If you're not given information about how to access them,  make sure to ask. 

Hi Pauline

I'm so sorry that things are so difficult for you at the moment. It's not surprising though as we are in a time that is unlike anything else that has happened in living memory - and to have to deal with a diagnosis of Leukaemia and all the discussions about treatments that go with that... it is distressing enough in 'normal' times so to have to go through this in present times is just so much more to deal with. 

I'm afraid I dont know anything about treatments for Leukaemia so cannot offer any insights into side effects of the Azacitidine injections. I do know though that the incidence and severity of side effects from chemotherapy varies a lot from person to person. I was very lucky that I didnt get too many bad side effects from my chemotherapy, which finished for me last week after 6 months of going every 3 weeks. The other thing is is useful to know is that oncology teams do their very best to keep side effects manageble by giving other treatments or meds alongside the chemo - they are especially concerned with trying to manage nausea. 

I really feel for you regards your experience with the CNS nurses. I imagine that the coronavirus has weaked havoc amongst their work as it has for many. Perhaps the Macmillan nurses helpline provided by this site (0808 808 00 00) may be helpful if you have questions during the week (Mon-Fri 9am-5pm) - I have used them a couple of times and found them helpful.I think the Cancer Research UK site have a similar helpline that is open during the same times (0808 800 4040). 

Outside of these hours if you really need to talk to someone, then The Samaritans are always available  to people who erally just need someoe to talk to (Tel 116 123). 

With your own health problems to cope with as well, you are carrying a tremendous weight - I do hope you find someone you can talk to very soon. 

I hope that all goes well tomorrow and that you get some answers to your questions. It will be good for you have the chance to be face to face with people delivering your husband's treatment, and to understand how the next week of treatment will pan out, and how to deal with things if your husband is too ill to attend hospital. Regards your concern about what happens if you are too ill to take your husband for treatment at some point, your county council should be able to give you details of the volunteer coordinators for where you live and there may be someone in that group that could help.  

The other source of help I just thought of any local cancer support group. The main hospital for my area has a Macmillan Centre to support cancer patientsa and their close relatives. My local hospital also has an independent centre that provides support and help too. Perhaps your local and regional hospitals have something similar. 

I expect the hospital will be able to give you good advice about what you can do to protect yourself and your husband. 

I'm sorry I havent been able to provide too much advice regards speaking to someone right now, I hope that once things get underway tomorrow you find more avenues of support.

I do hope the treatment goes well for your husband this week and that you are able to be there with and for him during it. I will keep you both in my thoughts and prayers.    

Nigel 

Hi Pauline , so sorry to hear the challenges you are both facing.

There are a number of folks on Azacitidine and it may take time for them to pick up on your post but if you put Azacitidine into the search tool near the top you can see all the posts about Azacitidine you then can hit reply to any of the threads and ask questions.

They would not want you to go to the hospital unless it is necessary but as most hospitals are not letting visitors in then this will help. I have witnessed many people not taking any notice of hand sanitisers at the doors and people with the virus will be in a protected area.

Make sure he wares gloves and a mask or at least a scarf over face and wash wash wash hands..

Catch a moment to take a note of the questions you need answers for and make sure he talks with someone in his team.

You will do fine ((hugs))

Good morning Pauline, I am so sorry to hear of your husbands diagnosis and your predicament.  If you can please stay in and shield yourself. The hospital will not want you there and you should be able to get transport for your husband. There are many neighbourhood scheme. Yes a mask will help reduce and contamination and make sure you wear gloves and or sanitiser and try not to touch anything outside of the house. If you do go with your husband then please make sure you change when you get in and shower. Put all clothes in a 60degree wash. This is being extra careful and works with me (although I don't go outside the front gate now).

With your COPD you should be on the at risk list yourself. https://www.gov.uk/coronavirus-extremely-vulnerable

if not please register asap. Someone will contact you from your local government office (or at least that is what happened with me). 

We are all scared and my local police and council are probably fed up with me reporting neighbours staying in their holiday homes and travelling. But needs must.

Take care 

jackie

Hi Jackie Thank you so much for your message.

I have driven Tony to  hospital this morning and will be collecting him, as dont know any other way of getting him there.

He text me and said they have given him a throat and nose scrape, which i presume is a corona test, but, not sure.

I will be registering with the Gov site in a mo and will be taking your advice  regarding washing etc.

As I said, thank you so much for replying to me, as it makes me feel Im not totally on my own.

I will keep you updated on events.

Stay safe

Pauline xx

Hi Mike

Thank you for getting back to me so quickly.

I drove Tony to his first chemo appointment this morning, and, will be collecting him in a few hours, as, he was informed no one is allowed to go in with him, so dropped him off outside unit.

He text me and said they have given him a throat and nose scrape, which i presume is a corona test, but, not sure.

Sadly i have been unable to get masks but managed to get gloves, so will take your advice and wear scarf.

I gave Tony a list of questions to ask, so hopefully he will come back with some answers for us.

I have had quite a few replies to my post, which I am slowly going through, and, I am so grateful to every person who has taken the time and trouble to reply, as it makes me feel Im not totally on my own.

I will keep you updated on events.

Stay safe

Pauline xx

Hi Lolie

Thanks for replying so quickly.

I am afraid I am like a rabbit caught in headlights at the moment and hopefully Tony will come home today with some positive news regarding some of our questions.

I think its the fact is,  that normally you could ring a number and speak to someone, but, everyone we have rang for advice has been  answerered by a machine.

I will keep coming on here to read the posts as it is giving very useful and positive advice, from people who have been through the same as us.

Take care

Pauline xx

Hi Pauline, yes the throat and nose scrape will be the Corona virus test. I am guessing they will ensure he is well enough to undergo any medication. 

if you need to get help ring your local parish councillor and or county councillor. Once you are registered it may take a few days to a week to get organised but in the meantime use anyone in the village/town that has offered help. 

Regarding the mask you can make one yourself with teeshirts (this material seems to be the best) Use two or ideally three layers. You have to wash them each time you wear them. Although not medical grade they way I look at it is that if it reduces any continuation by 10% or 50% it is better than not having one. Or cut up a teeshirt and put inside your scarf to give you extra protection.

This site was a life saver for me when I had AML 6 years ago. I was in France and they scared the living daylights out of me. Lots of people who helped me through it are here now so please never feel you are on your own.

Good luck all round 

Jackie