I’m still here :)

[Hilo13]

it’s been a while and my last post was not very positive . This is a quick update . I’m still unclear as to how I got here with my illness but I received palliative chemotherapy six cylcles one every three weeks. I think it was a variation of chop plus an immunotherapy drug beginning with B . The treatment was extremely tough both on my body and my mind . However I am still here scans and PET Showed complete response ( still not sure what to ) and I will be seen again in eight weeks . My consultant is the best of a bad bunch at the Haemotology dept I’m afraid , but she is in contact with the University hospital at Cardiff . There are no trials around but she mention stem cell transplant I must be honest at my age 69 I think I might be too old ? any thoughts ? I am feeling low about my situation plus I have lost all my hair eyebrows eye lashes just hoping my complete response lasts long enough for my hair to grow ( sorry to be so vain ) I am feeling ok but am still struggling with my prognosis. Onwards and upwards . I hope you are all doing ok I often think about this site and the people on it x Chris

[BigfootT]

Great to see your post! Wishing you the best and hoping you see hair follicles soon.

[Jm954 Administrator]

Your post has made my day, I am so happy to hear from you and that you are as well as you can be at this time. 😊🎉⭐

I had a transplant at 68 and it has been hard but now, with some distance behind me, I'm glad I did it. It's not an easy option and there are desperate days but you have been through the fires of hell already and will cope.

I can completely understand about feeling low about your appearance, I have struggled with that aspect of my recovery from the transplant. I still don't feel or look entirely like I used to and I am going to have to get used to the idea that I never will.

Things are a bit tricky ahead but the better times are yet to come. xx

[Hilo13 in reply to Jm954]

Thankyou I have decided with the help of my family who have been incredible through all this to go and talk to the stem cell transplant team to get an informed decision. They might decide I’m not a good candidate and then it won’t be my decision ( coward that I am ) also it would seem that having the transplant requires organising and pre planning something I’m sad to say is lacking with the Welsh NHS . It is kind of you to answer and give your experience. Stay well x Chris

[Mtk1 in reply to Hilo13]

Hi Chris, you are anything but a coward, in fact you are quite the opposite, it’s good to hear from you and thank you for keeping us informed, all I can say is I wish you well in whatever you decide to do.

Dave.

[Stewie_1968]

That's really good news about your response , I'm sure your team wouldn't mention it ( stem cell ) if they thought you weren't up to the transplant.And like Jm954 said you have already been through a real tough regime and will cope

Stay well

Stewie

[Jooby59]

I have an appointment next month with the stem cell transplant team in Southampton. Like you I find it a very scary proposition and am trying not to think about it too much. I am 66. I know it is really the last resort for me as I have had 6 different treatments in 5 years and there isn’t much left to try. But I trust my consultants and if they say I have a good chance of a few more years then I think I should take it. Also, I have been through some hideous times when I have been so desperately ill that I feel I am tough enough really. I hope you feel perkier soon, I was devastated when I lost my hair and eyelashes but they grew back quickly - yours will too. Have you been on a “Look Good Feel Better” workshop? Google it and find one near to you - its a wonderful boost when you feel at your lowest plus they give you tons of free make-up. Good luck. x

[Hilo13 in reply to Jooby59]

Thankyou I will definitely look that up and good luck with your September visit it has helped to hear from people in their sixties good luck x Chris

[Spark_Plug]

Well to have gone through what you have, you'd be something to worry about if you were walk in the park joyful.

Time to hunker down a little while. focus in the basics Tier1 rest, hygiene, nutritional, and safety.

Tier 2 emotional grieve for what you've been through and be honest about the disappointment, it will lead the way to honesty about the things to be grateful for, a time to speak talk it out with someone who will listen with your best interests in mind, a time to be silent contemplate how you would explain your journey to yourself, that gives you a lot of time to draft and edit until you've moved on to think about a future. The beauty of the human condition is we will eventually get bored silly of even the worst circumstances, that's what tells us we're recharged enough to keep going.

Tier 3 social let people care for you, we were all infants once and whatever soothing we received felt good and healing our little woes, our woes have grown but not our need for soothing, reciprocate choose one person and just thank them it doesn't matter if they brought you food you won't eat or take your trash, you just may surprise them that they were noticed.

Write us when you can, we're here for you. 🙂💐

[Hilo13 in reply to Spark_Plug]

Thankyou

[Poodle2]

Chris, your post has made my day. I'm so so so happy to hear from you! I have been thinking about you a lot. I am not gonna lie, I was really worried as your last post did not sound that great - totally understandable...I'm actually crying how happy I'm that you are doing OK...but it could be better, right...I really hope you can go for the transplant and that you decide that it is the right path for you to take. So many inspirational stories on here - it is surely a tough journey but it might bring a great result. I'm sending you a massive hug. Thank you for keeping us updated 🙏🏻 ❤️Petra

[Hilo13 in reply to Poodle2]

Thankyou for replying everyone has been so generous and kind in their replies. I remember reading your posts when you were going through your treatment I remember you had a tough time . Here’s wishing you and yours continued good health and happiness x Chris

[Thursday45]

You have done so well. It must have been such a tough journey but it’s so good to hear from you. Wishing you good luck for your continued treatments and recovery. Sending hugs.

[PaulaRichmond]

Prayed for your healing and strength and ease of treatment if you move forward with it. You are a warrior.

[CountryHarbour]

Sorry to hear about your situation..I don't think your vain with the hair comment..I imagine you just want some semblance of your normal self ..hang in there ..best of luck

[Abernathy]

Good morning every morning is good one whe we can say Hi we are still here :)Sounds like a tough treatment journey already but you been told a compmete!! response which is great news. ?-CHOP is tough but we got through it.

I am sure you look lovely with or without your hair, but we all understand different things makes us feel normal.

You mentioned no trials and the best of bad bunch .

I use this link to look what is available and ear marked one In Addenbrookes if my CAR-T therapy is not a success.

find.cancerresearchuk.org/c...

Hope above help

Lovely to know your family are there for you. Keep smiling and enjoying what you can

[Basil01]

Chris - your post shouts out your bravery and generosity in reaching out to us. Thank you. Wishing you well in every way. X

[Melina26]

sorry this has been so rough, but look, 69 is not very old. You are not a throw-away person. My vanity would suffer too, so now is the time to try the false lashes that are so popular and maybe a wig in a color or style you have never had. Brows can be delicately replicated. Give your ego a boost!

[thompsonellen2]

Glad to hear you are doing OK and have a complete response. I am 56 and had a SCT consult this year. I'm in the US and may have one or two other options (maybe you can find a CAR-T trial?), but I'm also out of easy options. I don't think it can hurt for you to get a consult so you can make an informed decision. And I don't think it's silly at all to be upset your eyebrows fell out. Right now I look and feel fine but I know sometime soon I'm going to go through a tough treatment and that it is likely I won't look or feel like myself afterwards. I'm also worried about cognitive loss. Anyhow, keep us posted and hang in there.

[Smakwater]

Hilo13,

No doubt that this disease is a struggle. As far as the age factor goes, we are still individuals and therefore one at age 69 may respond better with a transplant than one at age 50. It really depends on the persons entire health profile.

Good to see you posting. I hope you have been enjoying much quality time!

JM

[BarneyFife]

69 is not too old for the transplant. I'm sure your doctors wouldn't have mentioned it otherwise. Good luck and hang in there. Like all the other times you faced treatment; you have got this too.

[skipro]

Sounds like you have been through such an ordeal. Although I do not know enough about your situation and treatment, it sounds terrifying and hard. I hope and pray for you to have a good outcome and some inner peace.

skipro

color

[Thundercat2]

Just adding my best wishes from across the pond! Hoping you find strength and courage from the comments here.

[Islandvibes]

sending rainbows

Rainbows

[Danie50]

hey!! Glad you're still with us! Take it one day at a time. Continue to heal and take care of yourself! You can always go and get tattoo eyebrows! 😂🤎🧡🤗