Living with NHL for 3 years & struggling more than ever

Hi KWARB  and a warm welcome to this corner of the Community but sorry to hear that you are struggling.

I am Mike and I help out around our various Lymphoma groups. I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of NHL eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ may be different from your husbands I do appreciate the challenges of this journey ever so well.

I will always say that the journey that the partners have can be as hard as the one going through treatment. There are a few family members/carers on the group so let’s see if they pick up on your post. 

What type of support are you looking for….. ? If you are able to explain a little more it will help others to connect and I will do my best to highlight other support resources….. and I always have my long suffering wife who has had to walk my 24 years beside me (see my story through the link near the bottom)

I not only volunteer on this community but I do also with Lymphoma Action.

Thank you for the reply. Basically, I just need some emotional support at the moment, just an ear to bend so a partner/wife/husband who is in the same position as me (or a similar position) that I could ask questions would be great. I’ve reached out for help through the NHS but they have been really poor, they just told Me to go and see if the GP could give me some antidepressants which I don’t feel I need so I thought I would see if talking to someone would help 

Thank for being open and sharing.

Post treatment support for both Patients and indeed family through the NHS is unfortunately thin on the ground.

As I said there are a few carers and family on the group so let’s see them pick up on your thread.

The Community does have a General Carers only support group but it does cover all cancer types.

Talking to people face to face can be very helpful so do check to see if you have any carers support through any Local Macmillan Support in your area and do also check for a local Maggie's Centre as these folks are amazing.

Lymphoma Action also run various Support Platforms with a few online groups specifically for carers and family.

I was on the receiving end of the treatment but I do understand well what my wife Fiona went through and had to deal with so I am always open to help out and Fiona is always happy for asking her questions ((hugs)) 

Hiya, my husband is currently undergoing a targetted therapy treatment cycle (BR) for Macroglobulinemia Lymphoma (Waldenström's). He's had 2 rounds of Bendamustine, but suffered serious side effects of sickness, crushing head pain (at one point he had a brain scan as they thought it could be a bleed), continuous ulcerated mouth and tongue, and was unable to eat. Permanent diarrhoea gave him an abscess on his bottom he had to have surgery for, and has only just had stitches out. So they decided 2 rounds was it, and he's now on immunotherapy (Rituximab). He has reacted to the 2nd treatment which was Tuesday, with red itchy arms, and looks sunburnt even though he hasn't been in the sun. He's also had a hacking cough for 14 days, and the antibiotic prescribed did not work. It's like a roller coaster, but it never stops so you get a chance to get off. We live in France and the healthcare is impeccable and very current, but he doesn't speak French so I struggled for weeks trying with high school A level chemistry to follow what was going on. It's just so hard to see him struggling, and he's become 100% dependent on me, which is a bit scary. It's very hard to keep up a positive 'front'. However, I've only had to deal with this since February 2nd. You have had 3 years of it, and I can't imagine how you have managed to cope for that length of time. What side effects has he got/had? I understand some treatments and their effects are very harsh. My husband seemed to dread losing his hair and went on and on about it, until I lost my temper and said "Look: let's put this in perspective here. You're not going to die, so losing hair would be irrelevant to folk with an incurable". I'm sometimes exasperated, sometimes frightened, sometimes angry and all the time tired out! Do share your anxieties and the aspects you are finding so challenging. Lots of support and advice to be had here, and I for one know how you must be feeling after such a long time. Is he on "watch and wait" now? xxx Andrea

It started with a general check up 2019 & a shadow was found what they thought was on his kidney but further scans showed it was a lump in his lower intestine & he went in for keyhole surgery March 2020 for a biopsy but they couldn’t get it so opened him up, he was on the operating table for 5 hours & they could only get a tiny part of it due to the position it was. Then covid hit & he was sent home with a scar from pubic to chest and no aftercare, basically, he was just forgotten.  20th April 2020 he was phoned and told he had incurable cancer NHL follicular low grade (the best type of cancer you can have according to the cancer specialist, which didn’t make the diagnosis any easier) & put on watch and wait & a phone call 3 months later & a handful of leaflet & that was it. Watch & wait for all of the pandemic & phone calls only. No face to face appointments at all.  July 2021 finally saw a cancer doctor in person then scans & watch and wait until the tumour grew to almost 8cms so RCHOP was needed starting March 2022 - how awful was this? Words cannot describe it. Hell isn’t close enough a word to describe it, but he persevered as the tumour was shrinking. 6 rounds of RCHOP and the growth was gone but when we thought we’d won the battle we did not know what was yet to come. He’s suffering chemo neuropathy sore cracked feet, lost his toe nails twice, burning stabbing pain (but apparently the cancer doctor today says this is nothing to do with chemo - I disagree - it has everything to do with it)  aches and pains, debilitating fatigue, cramps, dizziness, vitamin b12 deficiency, memory loss, irritability & his mental health issues are so low I worry what he may do. He can’t walk far & now uses a stick. He has trouble sleeping  and is restricted in all aspects of life. Yet the cancer nurse says it’s all psychological, he just needs to get on with his life & not worry so much. I have to do everything for him & I'm utterly exhausted. And this is just a basic description of how hard it is. I would be on here for hours if I explained everything. He’s now on a cancer trial and is seen every 2 months for 2 years but the cancer doctors really don’t care about any of his after effects and we’ve had to go back to his GP. It’s just a never ending cycle of being passed from pillar to post. I just want to scream most of the time but have to remain strong for him. I’m just so fed up. 

Oh KWARB I can't tell you how sad this makes me, for both of you, caught in what seems like a living nightmare. I have to go down to our laboratory in Carhaix, our nearest town which is 17 miles away, with sputum for my husband's cough to be analysed. Yet more worry, and he's also had to stop new antibiotics after only one dose as his hands and arms have swollen up and gone dark red.

But I'll be back in a couple of hours and we can have a good chat then. So much of what you're saying sounds like the NHS having staffing and many other issues, which is awful for the people, like you and your husband, who are victims of the funding cuts. What a dreadful time you've both had. Here, a CT scan is a 2 hour visit to Quimper Hospital, 20 mins in scanner and then 15 minutes where they share the images and explain them to you! Waiting for results is, in my opinion, one of the most horrific and stressful parts of all this. Big hugs for now, I'll be back later.xxx Andrea

Hi there KWARB

Well the first thing that I think is rather sad in your experience of this disease is a cancer nurse saying "pull your socks up and get on with life"! When someone said that to me I replied "I tell you what, I'll break your ankle and you can WALK it off!". 99% of cancer nurses are amazing. Very sad that you experienced that.

One thing I haven't picked up is your ages. I am 65 and Peter is 66, so he's in the "late diagnosis" she range. Even so, the treatments are improving all the time and when they told you it's 'the best type of cancer", for treatment options and survival rates, in patients with first diagnosis at 66, (Peter's age) that's exactly right. Of course every case is different, but if one had to choose a cancer, in the over 65 age range, this would likely be one of them.

Do you have any access to chiropodists for the feet reaction? Because we are in France, I don't know the system in UK.

I do agree, that those "side effects" are indeed very likely attributable to the chemo. Do you know what the drug was? Sometimes the internet is your friend, and sometimes it's your worst enemy.

We have been told that for Peter's cancer, he will have one more cycle of Rituximab, which is immunotherapy, end of July, then he will have fortnightly blood tests, and provided those results are within expected range, he's on watch and wait with a follow up consultation in November. He doesn't have the Rituximab by IV, he has a sub cutaneous injection under the skin, as he reacted very badly to the PICC line and catheter. Half an hour before he is given 1000mg paracetamol, 10mg of Cetrizine, which is an antihistamine used to relieve allergy symptoms such as watery eyes, runny nose, itching eyes/nose, sneezing, hives, and itching. And also they give him 100mg of Cortancyl, which is Prednisone, given as an anti inflammatory.

One thing I have learned is it is essential, if at all possible, to accept every single offer of help offered. And you have to have some respite and NOT feel guilty about it. Whatever it be, hair cut, weekly swim, a craft club, you must keep it up, as us carers can't afford to get ill ourselves. I've only shown my frustration once to Peter, and bitterly regret it, so now I bite my tongue, go down the field and scream at the cows in the next field! I think my French neighbours think I'm mad!

If you are seriously worried about his mental health, ask for a referral to a psychologist for him. Again don't know the British system anymore, but all the "complimentary therapies' are available here. Do you have any friends and/or family who could pop in and be there with him to give you time out? It makes such a difference.

Ok, I'm sending lots of hugs and good vibes, I'm bound to have forgotten something, but my husband's cancer is very similar to yours, except Peter's is rare, you and I can support each other! Always available for a chat.xxx Andrea

I’m 50 and my husband is 62. He’s on a plethora of medicines for several other conditions including his cancer battle he has keratoconus and has had a cornea graft in one eye, has diverticulitis, a lipoma on his neck and now is having to go to the dermatologist for suspected skin cancer. He takes medication for dizziness, depression, skin conditions on his feet/toes & skin condition on his arms and legs, b12 injectns etc etc. too long a list to name them all! It’s been so good being able to talk to you and. Like you, we have only had one major fall out and it was tough as I said a few things I regret but we’ve got past that now. 
his GP has been fantastic so we have her support so with his appointments next week we’re going to ask for certain medications to be increased & for referrals to other professionals. I’m disappointed with the NHS I can’t lie, they really have let my husband down, you would think they were aware of how difficult it is after chemo, but I don’t think unless you’ve actually been through it, you just don’t understand at all.  I have family around that can help but I’ve been too stubborn to tell them that I’ve been struggling. My parents are older and they don’t need the worry.  My adult children have been great with their step dad but my husbands own children have never bothered (they are only interested when there’s money involved ) 
my husband is on a 2 year PETReA trial and is monitored every 2 months with blood tests a week before. He had done 6 cycles of the trial and next month has his CT and PET scan which will reveal if just being on watch and wait has worked or wether the people having a 2monthly course of Rituximab is still needed after chemo. He’s just been told he’s at stage 3. I’m not an expert on his condition but I do look at Macmillan and lymphoma sites for help and I’m hoping talking to others will make life just a little more bearable. Thank you once again for your support. I feel awful as I’ve not commented on your situation but do feel desperately sad that anyone has to go through this. I hope I can be of some support to you and others, maybe that’s the answer for me, to get more involved helping others. My name is Karen and I’m so pleased to meet you Andrea