Struggling with treatment

Hi everyone.
I’m new hear but felt I needed some support so reaching out to others who may know how I feel.

I was recently diagnosed with lymphoma and started going through chemotherapy. I’m 2 rounds in, out of 12. I’m really struggling, I’ve had terrible side effects, my anxiety is through the roof and my body just doesn’t want to do anything for a week after treatment. I’ve been in bed now for 7 days.

I’m fiercely independent and I’m off sick from work, my husband’s having to do every thing and I’m just feeling lousy about it all.

Has anyone else struggled with treatment? I’d love to know some people’s experience as everyone I have spoken with so far has definitely had an easier time (so to speak) than I’m having with side effects, I just feel like my body won’t take anymore.

Thanks for listening
Kx

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A great big welcome to our forum @Wylie1 I am so glad that you have found us.
I will copy your post to @GemmaBloodCancerUK for you as well.
It sounds so debilitating for you and especially as you are so fiercely independent and now your husband is doing everything.
I have not had your struggles but do your medical team know what you are going through as they just might be able to help you or explain what is going on for you.
As for your anxiety on the Blood Cancer UK website at the top of the front page is ‘Support for you’ there is ‘Mind and emotions’ there are some strategies that some people have found useful.
The Blood Cancer UK is also there for you if you would like to talk to someone and you are now part of our forum family.
I hope others might be able to help more and it would be good to hear more about you.
Perhaps tell your husband to also look after himself.
Look after yourselves and be kind to yourselves

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@Wylie1

Welcome to the forum and thank you for sharing.

My sister had chemo and was in and out of hospital during her rounds of chemo. I think us around her were all comforted that she was having treatment in hope that she would get better, and though she had good days, when she had bad days she was really bad. She too… was massively independent and thoroughly enjoyed her freedom, from eating what she wanted, going where she wanted to go and not being tied down to people having to do things for her nor her feeling the need to do things for others (single with no children) however she soon was dependent on people taking her too and from hospital, feeding her, dressing her, fetching things, but I think the thing she struggled with most was dealing and coping and feeling guilty for people not quite knowing what to do, doing the right thing by her and of course understanding what she was going through and how it was making her feel.

Every cancer patient is different much like everyone’s cancer treatment, even when your labelled with the same tag. One shoe really doesn’t fit all. And I think one of the struggles most cancer patients feel is that no round you quite gets it or you. It’s really hard to explain or put into words and trying is sometimes so tiring that it makes you question whether it’s even worth it,

It sounds like your diagnosis has ripped the rug from under your feet and everything seems to be unnervingly different and counter what you’re used too.

I think everyone on here have positive wishes of hope but also have darker experiences to share but ultimately it’s knowing you are not alone.

As you’re recently diagnosed you must be kind to yourself and give yourself a break as you not only build your strength to recover physically, mentally and emotionally, but also allow yourself you assess how best to be managed. Your husband will obviously be worried, scared, nervous and helpless so allowing him to small things will allow him to do what he can to help you and give you one less thing to worry about and focus on getting better. Talking and communication is really important to understanding the suffering and caring roles which is a nice segway to say that the BCUK have an amazing support framework on their website or on the phone or here, and it’s helped me massively as I ride this crazy wave.

We are here for you :slight_smile:

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Hi @Wylie1

I’m so sorry you’ve had a lymphoma diagnosis, and that you are struggling with the chemo. It’s good that you’ve reached out - everyone is so helpful here.

I really sympathise on the chemo front. I had chemo for Acute Myeloid Leukaemia - so probably a different chemo - but I also experienced terrible side effects. Pretty much every listed side effect there was. I was terribly ill from it - whereas other people barely feel it. The medics all commented on how badly I was reacting - which made me feel even worse, like I was a total wimp or something. Usually, I’m a physically robust, strong (and independent) person, so it was really frightening and upsetting to find I had no control whatsoever on how my body responded to these chemicals. I was a bit angry with myself for experiencing such massive side effects.

A nurse kindly pointed out that these chemos are extremely strong chemicals that are designed to kill off parts of us - and they are often indiscriminste about which parts. So some of us are bound to react strongly to them.

I liked to think that my body reacted so adversely because the chemo was doing an amazing job of killing off the bad cells, and so my good cells were feeling it too. I took it as proof the chemo was doing its job well. I don’t know if this is true, but I found comfort in that.

As for your need to rest up for a week afterwards - it’s probably good that your body is saying it needs rest, and is forcing you to do so. Healing and repair happens during sleep. If you need to rest and sleep, you really should. I spent the better part of 4 months in hospital sleeping! And chemo can make you very tired anyway - not to mention the blood cancer.

My husband also had to do everything. He’s a mariner, and is usually at sea for 6 months of the year, but he had to take 9 months of unpaid leave to look after our son whilst I was ill. I felt terrible about that - our finances took an enormous hit, and he’s not used to so long at home doing so many domesticated things. But he did it with absolute love and dedication. He even washed and IRONED my vomit-covered pjs. (Ironing pjs is going above and beyond in my book.) I’m sure your husband is taking on what he can with the same love and dedication. That’s what good spouses do. I’m sure you would do it for him. That’s one of the silver linings of a cancer experience - husbands and wives have an opportunity to show how much they care, and it can bring partners closer. I appreciate my husband a million times more now. We’re so much closer. I hope the same happens for you both. And having extra chores to do is probably a relief for him. He can’t make you better, but at least he can do something. And it’s so much easier to cope if you are busy, rather than twiddling thumbs. How’s this for spin? You are doing him a favour by allowing him these extra tasks. :slight_smile:

Hang in there with the chemo, @Wylie1. It’s awful - but it’s what gives you your life back. It will soon be a memory, and you may eventually feel a tiny bit proud that you weathered such a torturous experience. You’ll be a hardcore survivor, and few things will phase you after this.

Lots of love to you and your husband. You can do this, if I managed it. XX

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Hi @Wylie1 and welcome to the forum. Lots of our members have already been great in sharing their experiences and offering advice.
It sounds like everything has happened so quickly - from diagnosis to treatment.
I was diagnosed with follicular lymphoma 5 years ago. I didn’t need chemo but had radiotherapy. What I do resonate with is that horrible feeling of not just being unwell but also relying on others to do things. So hard when you are the one who looks things.
My anxiety increased at full force. The Blood Cancer helpline is so useful and you can access counselling through Macmillan, who are working alongside Bupa. It kicks in pretty quick once you apply. I completely understand this counselling may not be for you. It’s just good to know your options.

It’s so great that you reached out to us all. I know that can be so difficult to do. We really do understand and it’s so important you have a safe space to share how you are feeling.
How are your family handling things? It must have been a shock for you all.
All I can advise is take each day, or sometimes even an hour at a time.
Sending extra special wishes your way X

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How are you doing @Wylie1?

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Hi @Wylie1,

I’m a bit late to this thread, but I wanted to just share some thoughts. My story is very similar to yours - a sudden diagnosis of lymphoma followed swiftly by ABVD chemo. I was also hit really hard. My consultant told me that most people tolerate ABVD well and many lead a relatively normal life during it, which initially gave me some hope. However, for me, it was quite the opposite - I could barely function for 12 out of the 14 days of each cycle, and went through a sequence of horrible side-effects each time around.

It hits us all differently. You and I seem to have been at the unlucky end of the spectrum while others are relatively unscathed, which is rubbish, I know. I can’t promise that it will get easier, but in my experience you can, with each cycle, get better at managing and finding relief for each of the different side effects.

I know it’s hard, I really do. Just try to focus on the fact that the pain and discomfort you’re feeling during the chemo is a sign that it’s doing its job, and killing the cancer. And don’t feel bad about having to rest. Listen to your body and give it the rest that it needs to fight this off.

Hope things are doing better for you now

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So e really great advice here @muppet. Shows the value of the forum :blush:

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Hi Wylie 1 , I haven’t been on for a few months, but back now, I would find it very unlikely if I’m wrong that no one has struggled at some point, 10 days into my treatment I had a hiccup, I was so tired and exhausted I said no - no more, as I my treatment was 13days 24/7 that was my 1st cycle, I had 4 cycles in total , they got 1 of the drs to explain to me about my journey, after he did it, it hit home I had to accept it and fight it, I am so glad I did, then after a month I got out of hospital my mum passed away, so I never want to life last year again, it’s now time for fighting getting back what was stolen from us, this is a fab group to join so your in the right place to vent/talk , or just say how things are, keep fighting, keep safe and well Xx :purple_heart::green_heart:

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Oh, @Jay I am so sorry that you mum passed away last year, that must have brought up so many feelings for you, including the final straw after all you had and were going through. Yes, 2+ years were stolen from us due to Covid.
Good to hear from you again, stay safe and be kind to yourself

Really lovely to hear from you again @Jay and it’s great to hear you are fighting back. I think we are all on that journey after the last two years X

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Hi Erica ,
Sorry I’ve been a stranger but I’m getting my act together slowly but surely , been trying to get another voucher from my consultant for a wig as I’m working on 1wig but no joy , apparently I’m not permitted one , my hair isn’t at any length that I can go without it on , so I bought 1 with the money I saved up , went to the hairdressers for a trim my fringe and wash my own hair , I didn’t see any straighteners and I put my new wig with its label still on it , on top of them , wig is completely ruined , I know it’s only a wig but the amount it cost me and she’s not helping me in anyway I’m gutted so it put me back a bit , I thought her shop insurance would’ve covered in accidents like that.
My body and mood is still on a rollercoaster , but I’m trying to think past it , had a fab time on Saturday , family fun day and Yvonne made us do it also , Jane popped up to see me yesterday my new pal that I met at the computer class, with this rain it’s making me feel cold to the bone , you’ll laugh at me anything at all that changes I blame the chemo , when I use it on my sis my sis says " chemo brain - your brain was like that before you had it , that’s older sis’s for you…

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Hi Nichola ,
This weather is something else , it’s freezing today, I’m sitting with a fleece blanket on as the decorator’s in so can’t put the heating on , in June usually March/April is when I turn it off, I’ve had good and bad days but getting better , as in time they say everything gets better , how’s you and this week got planned for you ? Had Andrew on Sunday the staff dropped/picked him up , was fab seeing him and he had his mum running after him just like it used to be… Lord Muck sitting back letting me do everything , but enjoyed every minute of him being here

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How unlucky with the wig. You must be really disappointed , especially after using your savings.
Don’t the kids love it when we run about after them. My girls are exactly the same :joy::joy::joy:
Out for dinner tonight celebrating Ella finishing her GCSEs and Libby just back at school after having Covid so hopefully a better few days ahead.
What are your plans for this week? X

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Oh @Jay I don’t believe your wig disaster you must be so, so so gutted, I would have just cried buckets.
What a lovely photo of you and also photos of Andrew, I bet he enjoyed you looking after him (and I bet you enjoyed looking after him !!!), and what a bonus the staff dropping him off and picking him up.
Great that you have had a bit of a social life and I think the rollercoaster of emotions and chemo brain are natural. Keep wrapping yourself up in those blankets and be kind to yourself.

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