Welcome back!

New with high grade hodgkins non lymphoma

Hi all been a member for a month or so but finally got the courage to speak. Like you all I have so many fears and concerns and I don’t have anywhere to turn as I am on my own. Currently I’m in hospital having my 5th cycle of chemotherapy where in strapped to the machine for 5 days and nights then home for 13 says before repeating the whole thing again. I don’t think is so much the cancer that is scaring me right now its how the treatment is effectively causing such negative issues with my other health conditions and no on seems to know if it is reversible. On top of everything I have now got a weakened heart and damage to the nerves in my legs. I worry that I will never be the person I was before and that my positive attitude is dwindling. How do you keep your mental spirits up and keep focused in darker times? Where can we go when society is not safe for us to be out in?
Sorry for so much negativity.
KatQ

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Hi @KatQ. Let me start by saying there is no need for you to apologise. It takes a huge amount of courage to post and to be so honest about how you are feeling. This is one place where we all understand those fears and can support and listen.
I’m really lucky to have lots friends and family around me. It must be very difficult if you don’t have that which is why being part of the forum is even more important.
I wonder - when you’re ready, if giving the support line a call Blood cancer information and support by phone and email | Blood Cancer UK would help as well. They are amazing if/when you decide to give them a call.
It would be great to find out a bit more about you. When were you diagnosed? I’m assuming during the lockdown (apologies if I’m wrong) which would have been really difficult!
It’s hard enough going through the treatment but the addition of other health conditions is a tough one.
I think we all - well I know I do, find it hard to stay positive all off the time and it’s only natural to feel like that at times. For me, sharing how I feel on here, using the support services and being kind to myself (which has taken time) helps.
Have you got a good medical team around you?

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Hi @KatQ thanks so much for having the courage to post, it is not easy.
I am sorry to hear that you are on your own, well you are not any longer because you have all of us to support you.
Yes, the fears, anxiety and concerns really take over in my mind too and I think that is compounded when we are in hospital.
Your treatment regime must be really wearing you down.
I think it is so true when you say it is actually your treatment that is scaring you right now, chemo is so scary and it’s effects.
I think we become a new normal in time and you say your positive attitude is dwindling, but perhaps it will come back in time when you build yourself back up.
I think we have to remember how much a treatment regime takes it out of us physically, emotionally and practically.
If you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk.
I found counselling helped me and if it is something you might consider it might be worth talking to your medical team at this stage.
Please don’t apologise for your perceived negativity, we do not have to on our forum it is the one place we can be honest and say how it is for us.
I see there will be a time when I step, very cautiously, out into society.
Take care and please do keep posting how you are.

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Hi @KatQ I just wanted to echo the comments of Erica below. You will get a lot of support on this forum, it is a really positive step forward that you had the courage to post to the forum. As Erica said, the support line will also provide further support. Everything you are feeling is perfectly normal. Yes, it is incredibly hard to stay positive when you are in the middle of the chemo. I had my initial chemo way back in 2004 but do remember how tough it was. How to stay positive? Well, I think it is indeed hard and I have no magic formula. I can only tell you what I did. I tried to mentally train my brain to say that the chemo would work. I chatted to other patients who were also receiving chemo and found it helpful to share experiences (That will not help for everyone, some people might be going through equally tough times and some people might find it upsetting, but I found it helpful for taking my mind off my own treatment). Lastly, I tried to find things that took my mind off it. Whether reading, travelling to somewhere nice, or doing some other activity that you enjoy. Of course this is not always possible when you are feeling unwell. If you are experiencing other side effects well worthwhile getting a plan of action to try to ameliorate the worst affects. Make sure you have someone who acts as your main point of contact for your clinical care, someone you can phone when you are feeling unwell or have other concerns about your treatment -usually a cancer specialist nurse (and for psychological support, you have already come to the correct place). I hope this has helped, even if just a little. I would also say ‘stay strong’ but I know how hard it can be, so do not beat yourself up if you are feeling a little down. In an old email forum I was involved with we called having a ‘pity party’ . I quite like the sound of that as it links something bad with something good! Take care

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Hi @KatQ. How have you been the last few days? X

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Hello @KatQ I am also receiving Chemo for the second time at the minute. My first round was successful although not pleasant and I was waiting on a stem cell transplant. Due to Covid my transplant was delayed and in the meantime my Myeloma became active again so that’s why I am on round two. I’m sorry you are on your own but I can only say please continue on this forum. I find I can express how I feel here better than talking to my family as I always play it down to them. There is so much advice here and everybody cares…… we are all in that boat or have sailed it rocky as it is!! I have listened to a few mindfulness pod casts which I found beneficial. I am so glad I found this forum and like you it took a while to post but now I find it so valuable. There will be people on here with your type of blood cancer and you won’t feel so lonely when you hear their experiences. Use the phone numbers if your feeling really low…. I think when you do it once it’s the start :smiling_face_with_three_hearts: please let us know how you are doing. Virtual hug to you!! :heart:

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I am due stem cell too

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Good to hear from you.
How are you feeling @Mayo57 and how do you feel about a stem cell?
Look after yourself xx

Hi @Mayo57 Have you got a date yet for your SCT? How are you feeling at the moment? Keep posting as there are a few of us at the moment waiting and others just started. I personally find the information valuable on this forum and you certainly won’t be alone xx :hugs:

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