Hi. I’ve no idea if this is the right place to do this (if I click on Introduce Yourself I find myself stuck in 2018, which would be great if it were real…). My partner was diagnosed with Sezary Syndrome roundabout Christmas-New Year. (Sezary Syndrome is an aggressive CTCL; “prognosis poor”). For the last 8 months we have been occupied with clinics, treatments and keeping food in the house during the lockdown, but now that both are coming to an end- at least temporarily- I have time to be really, really depressed. If any of you has any advice on how to keep the brave face when talking to the OH I’d be pleased to hear it. Thanks. BTW not keeping a brave face isn’t an option- please don’t tell me to have a frank discussion with my loved one. He really, really isn’t ready for it. And friends who ask “How is he?” really, really don’t want to know- what they want is reassurance that somehow life will go on untroubled. So, over to you guys
Hi @ChrisD, I am so glad you have found our community forum. This is a place for you so that you can say what it is really like being you as perhaps you cannot to your loved ones.
I find when I get a shock, like my diagnosis, I just go into practical mode and in your case the pandemic and lockdown set in as well, what bad timing, a double whammy.
My body then just keeps going and going and then my emotions eventually set in and that is when I get really depressed. What you say, feel and think is so true.
I wonder how many people ask you how you really are, we will because we really want to know and care and if you need to talk to someone you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at email@example.com.
I really look forward to hearing from you.
Hello Chris D. First of all, a very big welcome to this forum. You have certainly come to the right place. I am so sorry for all you and your husband are going through. I speak as someone who has a different blood cancer but sometimes I think it can be just as hard, if not harder, for the family of loved ones who are the patients. Us patients have to just get on with it! There is nothing I can say to make everything better for you, but my advice would be try to find someone who you can be ‘real’ with. Maybe a counsellor or someone from the Blood Cancer UK support line. It is not good for you to have to feel that you’ve got to put on a brave face all the time. I find keeping a journal and writing down how I am feeling helps. Also, I am quite creative and sometimes I try to draw a picture of how I am feeling and somehow it helps to express it that way. Thinking of you so much. Please keep us up to date with how you are doing. Sending warm wishes. Willow
Thank you, both, for your responses. Erica- yes the practicalities have kept us both going up to a point. The lockdown was a practical challenge which took up much of my energy; what was left was used up driving OH backwards and forwards to hospital and suchlike. Now, we’re waiting for results of PET scan and making up a list of questions and demands (Ha!) for the next telephone consultation with the haematologist. There’s some spare time to think about what will- and won’t- come next.
Reading posts from much younger people having to cope with devastating diagnoses makes me feel very selfish- we were, complacently, so looking forward to the next few years, and I’m trying hard to adjust to the loss of that future- which we always know can disappear at the toss of a coin by someone up in Dunmanifestin (any Terry Pratchett fans here?) but on which we can’t help ourselves building our present happiness. Willow- others have suggested a journal, but the thought fills me with horror- having to confront the reality with real words on paper. But- duuhhh- I suppose that’s just what I’m doing at the moment. Hum. Let me think about that for a while. Time for bed. Thanks again, C
A PS- I see I’ve missed out one crucial fact to explain my burbling about feeling guilty- I’m 72, OH 71. I feel I should be feeling grateful that we’ve got this far without any real disaster, but it doesn’t seem to work like that. 'Bye for now, ChrisD
I was diagnosed with blood cancer in 2003 and I was lucky enough to celebrate my 70th at the beginning of the year just before lockdown. It was my best birthday ever. Bye for now, it is also past my bedtime.
I am a newbie and not sure where to post.
Looking for chat with people.
My mum was diagnosed with MDS Christmas eve 2019 and shortly after was admitted to hospital for a 3 weeks. She has spent probably 14 weeks out of this year in hospital.
5weeks ago we were told she had leukemia cells and started new chemo sessions straight away. After her 1st was admitted and not been home since. The consultant I spoke to this week said she would be surprised if Mum is with us for Christmas. My dad is devastated as because of covid cannot see her
She is having platlete and blood transfusions every 2-3 days at present and IV antibiotics. I feel like an emotional time bomb should I be preparing myself and children x Absolutely distraught xxxx
@LH3 Hello, and I am so pleased you found us. It sounds as if your mum is going through some very intensive treatment, and it must have been so upsetting for you receiving that devastating news over the phone. Are you the person who is the go-between with consultant and your dad? Are the hospital able to arrange a short zoom call?
There are links on the forum about how people have dealt with telling family about a cancer diagnosis, and there is also information on the Bloodcancer UK website that may help you.
If you need to talk to someone the Support team are available on 0808 2080 888 10am-7pm Mon to Friday and 10am-1pm on Saturday and Sunday or email firstname.lastname@example.org
Be kind to yourself too, and I hope that I have helped a little
@ChrisD I had blood cancer 13 years ago and I agree the practicalities do keep you going. I went into meltdown after treatment finished, and people don’t understand that once treatment finishes the hard work to achieve physical and mental health really begins. Relationships take a battering because a partner has become a carer, and the cared for wants to be seen as a lover and equal again.
A couple of years ago myself and my husband gave a talk at the Christie about our experience as patient and carer. I certainly found out a few things about our situation that he had never spoken to me about before.
Do not think that just because you are older you are not entitled to feel cheated. The future will be different, but there can still be pleasure in it. I could never have dreamed that l would have enjoyed so many different experiences, As Jason Manford said in one of his shows, too often when we are going through a tough time we think, oh, but it’s not as bad as so and so. Our tough time is the toughest, and is valid.
Take care, and I hope you both find joy
Thank for reaching out to me. The numbers will be useful. The covid situation is making a very emotional time even more so.
@LH3 Perhaps the cruellest effect of our response to the covid virus has been the separating of sick people from those who love them. I do hope that there might be some easing of this over the next few months, so that your father is able to see your mother. My heart goes out to you and your family.
Hi @LH3, a great big welcome to our community form, @Pisces56 has given you details of our information and support services.
I believe being a carer is the toughest role in the world and suddenly the relationship with both our parents changes and and you are so powerless.
As you say Covid has also taken it’s toll on everything.
You and your dad must also feel devastated to get such news about your mothers prognosis and you cannot even visit her.
We are here to support you and it is a place where you can say what it is really like to be you. You must be absolutely distraught. Take care.
Hi @ChrisD and welcome. Whatever age you gets diagnosed brings its own challenges, and being older, I don’t think needs makes it any easier.
I agree that writing can be very confronting and you have to wait until you are ready.
Writing questions down is the best bit of advice I was given. I now don’t leave unril everyone of my questions are answered.
You take care x
Hi @LH3. A big welcome to the forum. I think everybody on here have given great advice already. I can only imagine how hard it must be for you and your family. We are here to listen at any time. Keep sharing and please take care of yourself x
Thank you ChrisD.
Just going to wave at the hospital window after dropping off nighties x
Oh @LH3, just waving at the hospital window must be so difficult and emotional. Take care.
I’d also like to add my welcome to to the forum. I’m really sorry to hear about the situation you are in and, the others have said, the forum is a great place to find support and guidance. It is important that you are also kind to yourself and give yourself some space as supporting your partner and having to put a on a brave face all the time can take its toll on you. You will find this a non judgemental place where you can either seek advice or just express how you are feeling and you must never feel embarrassed at saying how you are feeling. We have all benefited from the mutual support network here and one of the ways this forum works so well is we all feel safe to express ourselves in an open way. Just remember the forum is here to help together with the other support services provided by Blood Cancer UK.
All the best,
I’m really sorry to hear about your
Mum’s diagnosis. Everything is even more challenging with the restrictions imposed by Covid and it must be really hard for your dad. It’s good you all have each other for support at this time but, as everyone else has already said, there is great support available through the Blood Cancer UK support services and all of us here on the forum as well. I know when I was diagnosed I was able to discuss this here that I found difficult to talk to my family about. Even just have a place to vent when you’ve had a bad day where you know you won’t be judged I have found to be a great outlet. I’ve also made some great new friends here too who really understand what having Blood Cancer means. Just remember we’re all here to provide what support we can.
All the best,
Thank you for all the support. Mum left hospital today after blood and platlete transfusions Monday Wednesday and today.
Who knows what the next few days week or weeks hold x:cry:feel like an emotional time bomb
Gosh - I bet you do. Your emotions must be all over the place - I think that’s only natural. Its great that your mum is home. What does it mean in terms of her care? Have you got anybody supporting you both with care and emotionally? Remember the the support line is there for you https://bloodcancer.org.uk/support-for-you/talk-blood-cancer/). I know
you said it would be useful. If not, give them a call. As well as looking after your mum you need to take good care of yourself. X