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Lonely
Hi, my name is Lynne and I had a bone marrow transplant just over 4 years ago. I have a kind and caring husband who does all he can to help which is so supportive, however I find I can’t discuss how I’m feeling as I can see it is overwhelming for him. This, of course, makes it a lonely life and things are happening to me where I feel I need to talk .
I have a broken back ( osteoporosis) at moment and am very scared and to add to this I have received information that the blood cancer has indeed returned.
I feel desperate inside and I feel that I am also overwhelmed with it all .
Comments
Hi @Lynne9591,
Thank you for reaching out via the Patients & Families Forum. I'm Claire from the Patient Services team at Anthony Nolan.
I'm sorry to hear how you are feeling, and I wanted to let you know that we are here for you to speak to if you wish - you can call our Helpline on 0303 303 0303 (Mon-Fri, 9-5).
You and your husband may find it helpful to access our Telephone Emotional Support Service - this is our free service to support stem cell transplant patients and family members, provided by a team of wellbeing specialists with years of experience in providing support for stem cell transplant patients. Once they receive a referral, they aim to call you within two days to try and get an appointment booked for within 2 weeks. If you or your husband decide you would like to be referred at any point, just let us know (you can call us on the above number, or email us at [email protected]). Find out more here: https://www.anthonynolan.org/patients-and-families/get-support-us/telephone-emotional-support.
You might like to consider discussing how you are feeling with your transplant team and GP if you feel comfortable doing so and haven’t done so already.
If you feel you need emotional support and aren't able to speak with us, you can contact Samaritans on 116 123 for free at any time.
Best wishes,
Claire
Thankyou Clare, I have already forwarded an email to the emotional team and await their call.
thankyou
You're very welcome - and we are here if you'd like to talk.
Also just to let you know - I can't see any email to us regarding the Telephone Emotional Support Service; perhaps try calling or email again if this is the service you are referring to.
Claire
Hi Lynne, I'm one of the online community champions and a transplant patient myself. I'm sorry to hear that you're going through a tough time and echo Claires comment that it's good that you've contacted the team through the forum. I liken the forum to the waiting area at clinic post transplant where you can talk to other patients who understand what you are going through.
We will support you as best we can if you need to offload your thoughts and it may help relieve some of the burden you feel you're putting on your husband.
The best course of action is that you have already taken by contacting the Anthony Nolan team directly. Claire and the Patient and Families team and as necessary, referral to the emotional support team, will be able to offer more specialist advice than we as patients can do.
I can imagine how hard you are finding things at the moment, particularly if the cancer has returned.
I hope we and the Anthony Nolan team can help you.
Best wishes.
Steve
Thank you Steve. I , like so many others , try and remain strong and positive throughout this journey, but sadly I believe that at this time I need a little help.
would you know approx how long this takes to get a first response? I’m holding my own but suffering severe anxiety which is also adding to my state of mind.
Thankyou in anticipating
lynne
Hi Lynne, hang in there. I know it's hard but things can always get better. A transplant is an incredibly tough process to go through on its own and you have added challenges on top of that with your Osteoporosis. It can be very easy to give up but that is when you lose your fight. We're here to help keep you going and with the exception of the small but very experienced team from Anthony Nolan, we are all transplant patients or families of transplant patients. We totally understand your feelings and at times we will have been as anxious as you are now.
Please keep in touch with us all and let us help you get things off your chest. It will hopefully help your hsuband too if you can talk to others like you that have gone through what you are experiencing. Claire and the Anthony Nolan team will provide the specialist support we can't give and they have access to many other resources that can help you.
I'm glad you've found the forum and hope this will help to give you some reassurance and the support you need.
Take care,
Steve
Hi @Lynne9591,
Apologies for any confusion, I can see that your email arrived into our Junk Mail. I have sent you a reply - if you're able to share your phone number by email, we can call you back today.
Thanks, Claire
Hello Lynne
My name is Michelle and I am an online community champion along side Steve and transplant patient.
I can empathise with your internal desperation. It sounds as though you are having a very difficult time not just physically but emotionally too. You have taken an amazing step reaching out onto the forum, it's a great way to connect with other patients and seek advise or reassurance.
My story is a little different but my mental health battles have been similar. During cancer and bone marrow transplant treatment I got diagnosed with a mental health disorder and I had know where to turn.
The best piece of advice I can give is, if you are able to, reach out to your GP, and be upfront and as honest as possible with how you are feeling to all your teams. There is amazing support available for mental health and emotional challenges. You don't have to do it alone.
When I I had a combination of things going on with my health I always felt invisible because I didn't know how to communicate to my loved ones that I was struggling. Finding someone outside of your marriage to talk through things can be helpful.
There is a lot you are processing at the moment, with your osteoporosis complicated by the injury and hearing of your cancer returning are valid reasons to feel the way you do. I hope speaking with the Anthony Nolan Emotional Support team helps.
There is also Mac Millan, your team, GP who will all have services they can put you in touch with.
We are still hear and please don't hesitate to post on the forum if you need someone to talk to.
Best wishes
Michelle