My husband diagnosed with t cell lymphoma AITL, under gone 6 rounds of chop, coped well no sickness just a few tired days, then this last round super tired, and problem with toe nails and sore eyes, lost his eyelashes. Consultant stopped at no 6 (he was scheduled for 8) says she thinks all good as lumps gone. Due to have a scan in about 4 weeks then a consult. Having read up (he doesn’t) this AITL relapses, I would like to hear how soon this is liable to happen and what is the next step in treatment if any. He is quite old so don’t think they would try a SCT, but who knows. I am finding it all very difficult, got my daughter through breast cancer 3 years ago, and husband was diagnosed at same time of year, and now with shielding find |I can’t escape and have a good heart to heart, or even a phone call as he is around all the time. Also was carer for learning difficultes adult son, who now has carers in (not that good), haven’t been able to see him and only in touch on phone. All super stressful, plus having to do lots more on my own, whereas before it was joint, so tired, and back ache. Sounds selfish moaning about me, but anyone else in similar position, love to hear your coping methods. Thank you all. Stay safe and well.
It doesn’t sound selfish at all. It sounds like you have a huge amount going on and are doing a great job. However, we all know that if you don’t look after yourself you’ll eventually crash! I’m not a carer myself but I’m sure you’re get some great advice on here. I’m shielding myself and live with my husband and two daughters. Just all being in the same house brings its own challenges. I have tried to take at least an hour to myself (maybe broken into 2 half hours) and do something for me. Whether that be a long bath, calling a friend, just something that stops me thinking about what needs doing next. Is there any chance you could find space for a bit and give the support line a ring? Might help to have a chat and talk things through. We all know how lonely this journey can feel sometimes. Keep sharing though, it’s important. Who doesn’t need a bit of a moan sometimes and here is as good as place as any x
Hi @Silverhead, a great big welcome I am so glad you have found us, @Nichola75 response says it far better than I could but this definitely is the place for us to tell it how it really is for us, I don’t think that is moaning at all. You certainly have and are having a really tough time. I think being a carer is the hardest job in the world and often a thankless task, you have no escape from. You are an unsung hero. We are all here to support you and If you were to get a chance you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday or via email at support@bloodcancer.org.uk. I cannot answer your questions, everyone is a unique, with different medical histories, perhaps your husbands medical team are the people to ask, if your husband doesn’t mind. I find writing down all my fears, questions, symptoms, practicalities etc., perhaps in your case with your husband, so you cover everything at medical appointments. I know when my back aches I am stressed. Actually for me I get stressed by my thoughts and tired from my actions. Perhaps a few treats are in order for you both. Please keep posting how you are.
Welcome to the forum we are all in the same boat although weathering slightly different storms. I agree with Erica you may find calling the support line incredibly helpful I know I did several times when I have called them. It will need to be your team you ask about his prognosis we couldn’t possibly guess. What I can say though is that it is likely there will be uncertainty around whatever they say. That can be frustrating as we want to know what will happen. I think that it is important to be honest and realistic about these things and be aware of what may happen, but it is also important to cling onto hope. My dad was told he had a ⅓ chance his chemo for his blood cancer would work. He could have decided not to take it and just accept his fate. But he was one of those lucky or blessed one out of three in that situation who it did work for. And now I am shielding with him having left my family home for safety due to my own diagnosis. He is fitter than me and can walk further than me and does gardening every day. So he is a success story. So be hopeful, but also be kind on yourself and realise it is OK to feel worried/ upset / angry or however you feel and you will need to find outlets for that.
Hi @Silverhead. There is a lot of very good advice offered above. You may also like to click on the 3 lines at the top of the page, and then the further categories, where you will find a section for carers and there may be other people you can connect to. Make sure that you take time for yourself too
Hi @Silverhead a very big welcome to you, it’s so lovely to have you join us. As you say, it does sound like you have so much going on- how have you been today?
I would echo the really helpful tips and advice from the rest of our lovely members here. You are very welcome to talk through anything further on here, and as others have rightly mentioned, there is our support line you can contact too if you prefer to talk more one to one with someone. Whichever you are most comfortable with @Silverhead
As some of our members have touched on already, has there been any opportunity to talk things through with your husband’s treating team?
It sounds like all of this has understandably had such an impact on you emotionally, may I ask how you’ve been coping @Silverhead?
Thank you all for your replies. Unfortunately due to Covid I have not been allowed to meet up with the consultant and the hospital team when he visits. He is not one for asking questions, or really saying how he feels. He is always a bit of a joker.
I did not cope well when he was first diagnosed as it was over the Christmas period same as my daughter 3 years previously. He was getting worse from first hospital visit to the start of treatment but now looks better and all the symptoms have gone, like hot flushes etc. But new ones from the chemo to take their place.
I was advised in the beginining when we were not shielding to go out and do things for me. Which I was doing, then shielding and really I am stuck so have to shield with him. This year was a big birthday 4 x 20 and we had planned 3 weeks away in a posh hotel, and later in the year a cruise, all of which of course had to be cancelled, not even a posh meal out with husband. So disappointment there, not helping and having nothing to look forward to with a date, is hard.
Also really worried about my son who we did so much for and now can’t even see him. The rest of the family live away, and don’t telephone often, one of them thinks texting is sufficient and when she phones she is always either taking the dog for a walk or cooking, so feel we are an after thought!!!
Sorry I am moaning again. Thought at start of lock down I was coping well, now just want to cry all the time, and can’t because I don’t want to upset husband.
Sorry thank you all for listening. Can I just ask why there is no information about t cell AILK lymphoma on the information page about blood cancer, is it that rare?
Hi @Silverhead, gosh what a double emotional hit you have had having 2 such frightening diagnosis over the Christmas period when the media image is of happy smiling families around log fires, so I am not surprised you felt you did not cope well. As I expect you have read on this forum many of us have not coped well with the lack of social interactions and missing family as well as the relentlessness of shielding and I have also had my tearful times.
I expect you are also anxious about your husbands diagnosis and treatment. Not being able to join him for medical appointments must also be hard for you, in a way you have been even more of the shielding prisoner.
You have also had so much disappointment from planned celebrations, I know it always boosts me to have something to look forward to. You must really miss your son and I know the feeling of offspring never having the time for a chat, I have heard it said that that is the way things are now and they still love you, but it also hurts.
I have found that this forum is definitely the place for us to be really honest about what is going on for us and how we feel and know that we will be understood and supported by us all. You can also contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday or via email at support@bloodcancer.org.uk. I will leave others to respond to your last question, but please keep posting.
Gosh @Silverhead what an awful lot you’ve been going through. Please don’t apologise, you are not moaning at all, I’m really glad you found this forum and feel comfortable sharing. We’re all here for you! It also sounds really difficult to have had lots cancelled and nothing to look forward to. That’s hard at the best of times, let alone when you’re going through such a worrying time. Another forum member was talking about how challenging it is at the moment without the distractions of seeing family and friends and going out etc.
It sounds so hard not being able to visit the consultant and hospital team with him. If your husband has given permission for his team to discuss details with you, perhaps you could chat to his clinical nurse specialist or key worker over the phone to voice any questions or concerns you might have?
There’s a bit of information about AITL lymphoma on Macmillan’s website here and on Lymphoma Action’s web page here in case it can be helpful.
Please don’t hesitate to give us a call on our free support line if you want to talk things through @Silverhead. We are here to support however we can.
Thank you all so much for your replies. Keep safe everybody