Scared for the future

I was diagnosed with follicular NHL

last august i am on watch & wait but have been told i will need chemo in the next few years

I am terrified of that happening as i dont cope well with any kind of sickness & also suffer with anxiety/ panic

I feel very alone as my family think that as its slow growing there is nothing to worry about , but every time i feel ill im worrying that it is spreading

Any advice please

28 Replies

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  • I have Marginal Zone NHL, also slow growing. I've just finished 8 rounds of chemo and like you I was very scared. I want to reassure you that in my experience it wasn't as bad as my imagination said it would be! I was nauseous but never sick and I was lucky and didn't lose my hair! All of the possible side effects have medication that can help.

    As for the anxiety, I totally get that. I'm on watch and wait now and I get the feeling that everyone thinks I'm 'back to normal ', which we know isn't the case. I am using a mindfulness app called Stop, Breathe and Think to help me stay positive. I'm also being pro-active about my health, taking walks when I feel up to it and eating healthily. Don't put life on hold - do stuff you enjoy and take time to de-stress. You might find you feel less poorly.

    And you can always share how you're feeling here or join a local cancer support group.

  • Thankyou

    i think that family assuming there is nothing to worry about because its slow growing is very difficult to handle

    Most days i am ok but those days when the realisation that i have cancer in me are dreadfully hard to manage

    Xx

  • I tell myself I have a chronic blood disease. I try hard not to use the C word because it would be depressing for me. I've lost so many family members to cancer. In my head, I refuse to be next. But I understand how you feel. I wonder if your local cancer support group could help? You might not feel so alone xxx

  • I have thought about a local support group but feel that it would become too big a part of my life which i dont want

    At my age 65 i wish i was more adult about this but i seem to revert to being a scared child when i feel ill

    Thankyou for replying

  • It's a very scary thing you're dealing with so don't beat yourself up about it. There is no right or wrong way to respond. The support group can provide counselling and sometimes relaxation treatments for free and you can go as often as you want, there's no obligation to go all the time. It might help you make sense of everything xx

  • I lie to myself every day and pretend I have nothing..

  • Yes i do thst too until i feel

    ill then it hits me again

  • you are not alone here, sometimes this feels like the best form of treatment for the mind! 👍🏼 x

  • I so understand.....

    my family acts like I have nothing also.

  • Its very hard because we know that it is inside us & its so frightening sometimes

  • Thankyou, it's reassuring that you coped ok with chemo , i judt hope i can do as well when ny chemo time arrives !

    I am still doing most things as normal , i walk my dog daily & also have 2 year old twin granddaughters who keep me very busy, they are a blessing. who keep me upbeat whenever im with them . X

  • Hi Pollynic, the first encounter with your oncologist always sticks out in your mind as being particularly stressful and frightening. I was diagnosed with Follicular NHL in 2014. I was provisionally put on the list for chemo in the following two weeks. After a PET CT scan and two bone marrow biopsies, it turned out that I didn't need it at that time. I was also told that I had "a good chance of surviving x no. of years" which did nothing for my anxiety! Now three years later and no treatment yet - this is what I've learned:

    Don't panic - this is often a long term illness which requires monitoring; work with your medical team but find out what you can do to build yourself up mentally and physically and focus on that and not on potential treatments further down the line that may or may not occur;

    Doctors have to give you the worst case scenarios because it would be foolish to give all patients an optimistic assessment of their prognosis when nobody really knows for sure.

    The only things you can control right now are your eating habits, your activity levels and what you choose to focus on - health or illness. So if you can spend time, little by little, improving your sense of wellbeing with some form of exercise and good quality not processed food you can only be helping yourself instead of worrying and freaking out which is not good for our immunity. Hope this is not too long winded but others may express it better :-)

  • Sharon very good advice. I was diagnosed with NHFL Aug 2015 and on Watch & Wait. If I have to have a cancer this is the best one to have. I was told some people never need treatment and if the times comes I do they have made great progress with new therapies.

  • I think being told you will need chemo in the next few years is a vague alert to a possible situation and the prospect of such treatment is likely to worry even the calmest of people. I would say not to let this stress you, with FL being a slow growing condition some patients can be on watch and wait for over 10 years without needing treatment.

    You may take comfort from meeting other patients, and sometimes partners/carers, this will help you understand and give comfort too. Look up the local support group meetings organised on your locality, if you are in UK lymphoma charity website is the place to look.

    Your comment about sickness is understood, the hospitals are well prepared and from comments made by other patients very supportive.

    Go and enjoy yourself, find things to do to focus your thoughts in the present. I too share similar concerns, am now on watch & wait, since diagnosis I have found an inner calmness, I have spoken to many other patients and realise the outlook is good, treatment if/when it comes will just be another stepping stone in life's journey, to be followed by many more good times shared with family and friends.

  • Hi Pollynic, I was diagnosed in November and know exactly what your going through, as do most on this site. My best advice, stay in the present, you can't do anything about the future. Be positive change your diet in ways that suit you, excercise moderately and believe in yourself.

  • Hi Polly, I was given the same diagnosis as you in December 16 just 6 months after having double mastectomy for breast cancer. Like you I was stunned and felt it was the end of the world with fate being very unkind to me. 6 months and a lot of reading later I realise how wrong I was. If you have to have cancer then it looks as though NHL is the one to get. I am on watch and wait and know that this can last for years. If it does progress then with our monitoring we stand the best chance of recovery. I am a fit 74year old and by doing the best I can to live healthily I expect to be around for a good time yet.( I have set my sights on 88) Don't despair, just remember that you are more than just a lymphoma statistic. Good luck.

  • What a lovely post ! You are so positive im sure you'll go beyond 88 !

    X

  • Hi Polly, have been following Dr.Ken Crawford's 'Kill Cancer' diet suggestions for about six weeks. Had my first follow up appointment post diagnosis this week. Was told that I had been anaemic with raised white blood cell count when tested six months ago on diagnosis but that both haemoglobin and white count are now within normal levels. (Strangely nobody told me that at the time). Another blood test in six months. It may well be coincidence but I intend to keep following Dr. Crawford's diet and will see what happens. PS. Am normally regarded as a cup half empty type of person but do in fact feel quite positive about lymphoma. Good luck. Rose

  • I too was diagnosed with fNHL, two years ago

    am on watch and wait, stage 1, grade 1, no treatment..

    doctors says it could be decades before something comes back...but I also get nervous....

    we are al in this together and I so know how you feel...

    this is a great group.

    from what I see Pollynic, this is very treatable and there is so much new treatment going on.

  • You and your caregiver should research, research, research. Below are a few sites that I've found provide great NHL lymphoma.

    lymphomation.org/type-folli...

    lls.org/

    patientpower.info/

    lymphobob.blogspot.com/

  • I have had NHL since 1994, am stage 3 but am in remission since 2005. At first I did ose my hair but that is a small price to pay for the results. I also did not have nauseous feelings, just tired after radiation. The treatments are much easier now with fewer side effects. Please remember NHL is one of the easier forms to treat. Stay strong and take it as it cones. We're all here for you.

  • I was diagnosed last May 2016 (stage 2b grade 2). Weirdly I took it very calmly. The chemical was scary initially but I went to the pub and had friend round for dinner each Friday I had treatment. Steroids are great things. I was able to carry on running 5k through 6 cycles. I didn't lose my hair and didn't feel sick. My husband was very upset when we were told I had to have 2 more, but I was glad because I am belt and braces woman. I still enjoyed Christmas day (10 days after my last cycle) and had no problems filling my belly although I was tired. I was told by my haematologist that R-CVP is a very gentle chemo treatment.

    I understand your frustration at your family. I have felt the same as they have had trouble get their heads around it. A friend who had breast cancer told me not to expect other people to prioritise your cancer in their thoughts or considerations. That is wise advise because it makes me less resentful of people in general.

    As the fantastic contributors to this site have all said, focus on eating well and exercising regularly. This is a fight you are going to be able to handle. I am 51 and intend to live to 100+. Be like an athlete and prepare as best you can for the time your body will need it. Mindfulness is great to reduce anxiety. It's nothing more complicated than spending a few moments listening to the birds singing or looking at the clouds travel in the sky.

  • Pollynic, it's quite normal to feel anxious about your diagnosis, so try not to question yourself on this. Your feelings are valid. Others often want things to be normal for you, and themselves, so any reason to give them hope may get that reaction of them being relieved that you're "okay". Be good to yourself through this. You'll need yo create new boundaries that spare your energy and mood. I found that Mindfulness training helped me a lot. My diagnosis was early 2015. I've completed chemo and my last maintenance treatment is in June. The whole experience has been life-changing, but strangely for the better. :) stay focused on getting well. Take care of yourself.

  • Pollynic--I think anyone diagnosed with NHL worries about their future. You just have to try your best to not let it consume you. I was diagnosed with mediastinal LBCL in 1/16. I was sick the entire year. In and out of the hospital. And the chemo was hell. But I have been in remission now for 4 months, and I do worry about it coming back. We are all human, and we will all worry about or futures when confronted with cancer. Hang in there.

  • Hi pollynic I was diagnosed with follicular lymphoma April 15 had chemo felt exhausted but just had to go with it followed by 2 monthly riitix top up hopefully next one last😳 went back to work full time after 7mths and luckily no problems. Like all of us I have moment s of what if it gets worse but try not to think to hard about it cause there's nothing I can do . wishing you well ph

  • Thankyou im glad youre doing well x

  • My best advice is to "just hang in there" and wait for your breakthrough. I was first diagnosed during a routine blood test while I was in hospital for appendicitis in 2008. I was touring in Ukraine at the time and had no clue I had a problem. In very limited English, I was advised to "check my blood" when I returned to Canada. About three months later, my lymphocyte count began to climb with alarming speed and I had to begin chemo. Several protocols were tried over seven months before one brought me under control. I had almost seven years of remission but eventually the cancer did what it often does, it mutated and my problems began again. My second time on chemo wasn't so successful. The chemo worked to kill off the cancer and bring down my lymphocyte count, but as you probably know, many other parts of the cell are also affected. My blood couldn't "rebuild" fast enough to allow another round of chemo, hence a kind of stalemate resulted. Damned if you do, damned if you don't! Two years ago I was put on a "trial" using a direct target drug which has worked remarkably well for me. I suspect when my good fortune with this current drug runs out, another will be found.

    Other advice: take a good look at your lifestyle and eating habits and see if there's any positive changes that can be made. I find that just the act of taking control and doing something I feel is positive makes me more confident.

  • Thankyou im sure the doctors will find another treatment for you

    This is what scares me, the thought of chemo ! I cant handle a stomach uoset !

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