Struggling with 'Watch and Wait'

Hello Tiddlypom

I have just finished treatment for bowel cancer. One scan and it's over, then a monitoring regime until 5 years has gone by.

My daughter's boyfriend had NHL when he was 17, horrific time including resuscitation on the operating table. He recovered, then had it again. He's recovered now, and working. He's 40 now, so he should be fine.

Make sure they are going to monitor you and how often, then try and forget it. Get on with your life and keep going for tests and scans when they tell you. Your oncologist should know the risks and check you within the time limits.

Have a look at Cancer backup. There should be some guidance there.

Good luck

Ruth

Hi, I have a different cancer to you but so much of what you said rang true with me. I am sorry that the NHL is rumbling away but hope you remain in the 'dont require treatment' category for a long time. As for living with the knowlege that something could be going on - I do understand - and I really dont know how I cope. I am terminal and am in the process of finding something in the way of treatment that will slow down the progress of my spread (of cancer). I try to do as much as possible on the days I feel up to it and have done things like had photos taken with my kids, taken them away to Florida and recently to Alton Towers. I am gratful to have the friends I have and rejoice that they are there for me when I am down. I find on the nights when sleep wont come I either potter aound the site here, reading other peoples stories and gaining inspiration from them, or I take a good book to bed and read until such time as sleep takes over. I have avoided taking any sleeping meds so far, but realise they may have a place to play at some point. My mantras for coping are 'Make Hay While the Sun Shines' - ie enjoy every minute you can, and 'I take the treatment on MY terms' - ie discuss my options with my oncol and try to balance quality of life with quantity.
As for NHL - when you need treatment there are many options available when you need it - and you can expect to get into remission again. My Dad is in remission at present too from NHL. I dont know if any of that has been of any help to you - Best Wishes, please send me a PM anytime. Jools x

I am sorry to hear that you have had a slight relapse, and can understand very well how shocked you feel about the prospect of "living with cancer". I can imagine how distressed you feel about every three months going through the stress of scans and possible revelations. Hopefully what will happen is that after a few of these, with nothing else kicking off, you will gradually settle down in between, and only feel worried for a few days around the actual appointment. We can get adjusted to extraordinary circumstances!
I am in the same leaky boat as Jools, and would endorse what she says: make every day count, and go right ahead now and live your dream. Hopefully, by the time a couple of years have gone by, they will know more about what causes this, and also have improved the standards of treatment. Don't forget there is always hope.
Lots of love xxxx Penny

My hubbie was first diagnosed at the same time as you but, as the follicular NHL was indolent (low grade), he was assigned to the "watch and wait" option.

I remember so well how hard it was for us in the begining to accept "doing nothing" whilst knowing "it" was there so my hart goes to you.

This is only my own experience and "by proxy" but I would advise to trust your own self to teach how to live with it and tells you if something is wrong. Just know your body is doing a fantastic job keeping it under control. As the months will pass and the visits to the hospital turn a "nothing happening" you will get bored with the worrying and grow more confident that you are indeed in control.

Do not see it at a curse but as an opporunity to better assess what to do with your own life as now you can appreciate that nothing is ever for granted. It may sound horrible but it will help you to live a truly better life - at least it has for us-. I am thinking of all the things my husband (and I) has been doing that he would otherwise not have bothered with. Because of the type of disease lymphoma is you cannot act as if you are immortal (as most people do and never comes around to do things that matter to them as "they are too busy") nor as if you were in instant peril of death (there is so many fantastic treatment options now and in the future for lymphome -look a the BiTE antibodies for example). This will oblige you to act sensibly as you do have a futur but not be too conservative.

When my husband was diagnosed I was wishing that we would not have gone to the doctor. I was thining: what good does it do us to know ? Looking back, when the pain of giving up on an imaginary futur life was gone we were both truly grateful to have been told. Whatever the futur hold, these last six years were the best of our lifes, being both intense and balanced.

So many people discovered the beauty of life when it is too late. You won't. Tomorrow might be very nice and full of hope or very gloomy and full of fear but today is here and now and if you are not able to enjoy a good day, well you'll never be, lymphoma or no lymphoma.

I would not expect that you will be able to see it (feel it) in that way just know (it took me about 6 months to recover from the shock but I did not know anything about lymphoma). However I expect that in a year or so you will be leaving a very normal life; just better.

Best wishes

Hi Tiddlypom
I've only just found this site so I'm really new to all of this but I have been diagnosed with low grade follicular NHL in Feb 2008. I struggle with the vagueness of this disease. My oncologist was happy to adopt the watch and wait policy too but decided in the end that I would have a six month course of oral chemo (chlorambucil and prednisone). Tomorrow I start the last 10 day course and then I feel really nervous about what will happen then. I have never had any signs or symptoms of the disease. I just said to my doctor that I was uncomfortable lying on my left side. An abdo exam disclosed a mass and after the subsequent barrage of ultrasounds, Ct's, biopsies and bone marrow biopsies we finally had the diagnoses. I'm a really positive, happy person who lives life at 100 miles an hour so this has been a real shock to me. How can I have a cancer of the immune system when I never get sick??? Anyway - I have decided that it's not going to rule my life. I will finish this last round of pills (which are very mild compared to what many others are going through) and then forget the stupid thing. My oncologist is a gloomy fellow who I am looking forward to seeing the end of.....I dont need people like him around me. I would love to keep up to date with how you are getting on. Keep positive and carry on living life to the full.

Leanne

hello - watching and waiting is a scary thing. I have been on recall appointments every three months since January 2005. I still get a bit twitchy especially when the blood is taken. But the regular visit also means that I am being watched over very carefully. Remember that, it is a plus.

Also even though you are much younger than me try and use this as a positive push to do the things you want to do. Hopefully you have many years/decades ahead of you, but still if there is something you want to have a go at, then go for it.

Plus I now view every day as a gift and delight in simple things, hope you can do that too.

Lots of hugs and hang in there. Let us know how things are goung, the support on this site is amazing.

Liz

Hi Tiddlypom

"I can't get my head round the fact that I'm now 'living with cancer' and that there's nothing I or the doctors can do to prevent the disease from transforming.

I'm now on a 'Watch and Wait' policy with check-ups every 3 months. I find this terrifying. 7 years ago, other than large lumps, I didn't have any of the typical symptoms (fatigue, night sweats etc) and I'm frightened that without any obvious symptoms a transformation of my disease might not be detected until it is too late."

I think the psychological impact of such news is one of the most difficult situations that anyone who has never been affected by cancer, would never understand. My partner is in the same situation with having check up's every 3 months for the rest of her life. We were buying a house and planning a family before the xmas and suddenly our future was snatched away. We were in absolute shock when the doctors told us what to expect from the future and we found ourselves reassuring friends and family that we were fine. Eventually we just eased up on ourselves and completely fell apart for days and cried kinda mourning this "planned future that would now never be". But we have come through it and we do plan, but only 3 months ahead and then after each results day we plan abit more. How my partner copes with this is beyond me, but we laugh everyday and we're determined to enjoy life to the full. People say "oh tell your partner you never know I could get run over tomorrow and thats it" or the "with time it will get easier" as well intended and truthful as such phrases are you know they really don't understand the head f*** of the twilight zone you've just stepped into and are trying to cope with right now. Whatever you do don't bottle it up talk to your loved ones and pop into chat or keep blogging. I've found that just coming on here and reading and speaking to others in similiar situations has really helped me not too feel so bitter and reminds me in my tearful times, that I'm not the only one living in topsy turvey land. I wish you all the best in this time of re-evaluating and re-adjusting to such mind boggling information. Laura xxx

Hi Anne

I too was diagnosed in 2001 but at the age of 26 with Hodgkins. I had 6 months of ABVD chemo. Yes it was awful, but I came out of the whole experience enlightened and felt fortunate to have been able to receive such wonderful care.
Recently I've started to have niggles and I'm going for a check up next Fri...so its interesting to read your post as I had no idea that it can reoccur but lie dormant in this way that you describe.

I can well imagine how this must feel. As far as I know I'm not in your situation but my only advice would be to take each day as it comes and really savour it, enjoy it rather than worrying. Easier said than done, I know. It must be very difficult. Take heart in knowing that they are keeping a close eye on you and that you were able to overcome it before. Take good care of yourself. I found that practising yoga and having regular gentle massage did me no end of good when I was going through it 7 years ago. I know that this is not so easy when you have the demands of a family to contend with, but where possible find time to touch base with your inner strength.

Marianne
x

I sympathise completely. I was diagnosed with NHL last November. I had a three-month course of chemo, and was told I was in remission, with an 80 per cent chance of it not returning. Unfortunately, the 20 per cent chance that it would come back won out, and I'm due to start chemo any day now.
I have found coming to terms with this incredibly difficult. I have read the stories on these blogs and try to tell myself that many people are in a much worse situation than me, but it doesn't really work. The idea of going through chemo again, with all that involves, is horrible.
The other people who have commented here are right, tho. Take each day at a time and make the most of it. In many ways, the monitoring is a bonus. If I hadn't been due to see the consultant for a follow-up appointment, my relapse would not have been spotted so quickly. So yes, we're living with cancer. But at least we're living.