DH lymphoma has returned straight after treatment, and really need some advice.

[purplerain44]

Hi, I hope I'm in the right board. I’m after some words of advice. My husband finished his 6 rounds of chemo for low-grade Non-Hodgkins lymphoma in November, with the consultant suspecting almost complete remission, although we knew it would come back in 5-10 years, as is usual with this kind of lymphoma. However, to our shock, we have just today found out it has transformed immediately after treatment and become high-grade aggressive lymphoma. It is in his bone marrow. He starts aggressive chemo on Monday and then they will consider a bone marrow transplant.

I would love any positive stories from anyone who has experienced anything similar to this. I know that with lymphoma there are highs and lows, and this can happen, treatment can be successful and then we wait for until another possible relapse. Treatments are good. But this has come much quicker than we expected. I suffer with anxiety anyway, but I can usually control this with meditation and breathing etc. This has become impossible for me now - I have two kids - 12 and 8 - my youngest on the pathway for ASD assessment (high-functioning, but very resistant and exhausting) and I am self-employed. I need to continue working during this time for financial reasons. My GP has prescribed me with 5mg of diazepam. I don’t know what I would have done without them for the last couple of days. I had to take 10mg today as my state of mind was intolerable.

I will speak to my GP about the dose, the addictive nature of this, but I wondered what experiences others have had of this medication. Should I not take it everyday? Do i need to stick to the 5mg - which really didn’t touch the sides today. I don’t want to give myself more problems coming off them. Or should I be looking at anti-depressants? I’m not depressed, I have been before, and I don’t think I am. I have access to an amazing therapist for me and I am getting a good service from CAHMS so the talking therapy is available to me. It’s the day-to-day functioning, catastrophising, always thinking the worst about my husband and what will happen to him and my kids, the physical symptoms (heart racing etc) and just completely unbearable anxiety and fear that I can’t bear. I would be so grateful for any advice. Thank you.

I wonder if I have posted this in the wrong place - would there be somewhere more suitable?
Thank you.

Bumping for you darling. It's such a stressful you are going through x

I wish I had something constructive to reply, but I’m thinking of you and sending all best wishes to you and your family. I’m so very sorry that you’re going through this.

I know this is a bit feeble, but maybe looking at some breathing exercises or the Headspace app might help, if you are able to take 20 minutes for yourself every day. It totally focuses the mind so you can’t ruminate about your problems. I know it won’t solve anything but it might help bring you back from the brink when the anxiety is too much to bear.

I would also suggest maybe reposting your thread on the general health or chat boards, they have a bit more traffic and hopefully you’ll get a few positive stories from people who’ve been in similar situations.

Big hugs to you.

Go back to the gp and ask if you can either increase your dose or try something else. Don't struggle on if it is not working for you.

Thank you so much for the advice - I will look at the Headspace app - I'll try the general health board?

Also look at some of the cancer charities and what support they can offer. Macmillan tend to be very good at the talking side of things.
Although high grade and aggressive at least caught now and your eggs aren't in all basket yet - plenty to throw at it.

Hi @purplerain44 I'm so sorry to hear about your dh's illness. What a difficult time for you all.

Antidepressant's can help anxiety as well. Maybe if the breathing and meditation isn't as effective as usual it would be worth speaking to your gp about the options available to help. Cbt could be useful too as it could help you manage your thoughts, for example by being able to identify your unhelpful thoughts and reframing them to reduce the catastrophising. Xx

Sorry you are going through this. It might be a good idea to look for an online support group for the type of lymphoma that your DH has that way you may be able to find others who have been in your situation.

Thank you so much, I'm going to speak to the GP on Wednesday.
The diazepam is good, it lessens the sense of being in a nightmare - I felt as if I was literally walking through a nightmare. I just don't know how long I can continue taking it every day. I have thought about CBT too.
Thank you for the advice. this is a lonely place to be.