My experience of active monitoring

Active Monitoring (Watch and Wait)
,
1

I’ve been away from the forum for a few weeks, and I wanted to share why—and hopefully offer some reassurance to anyone currently on active monitoring.

I know many people find ‘watch and wait’ stressful, but for me, it’s been a lifeline. In the 8 years since my diagnosis, I’ve been monitored so carefully. Recently, a PET scan showed possible activity in my appendix. My team was straight on it—biopsies, echoes, and bloods were all prepped in case chemo was needed. My CNS was on the phone constantly with MDT updates.

The update now? My biopsy is still under review, but they actually think it’s appendicitis rather than a relapse. I’m seeing a surgeon next week. It’s a strange world where you’re happy to have appendicitis, but it just goes to show that active monitoring works. It catches things early and keeps you in safe hands. You aren’t being ignored; you’re being watched over."

6 Likes
2

Completely agree @Jules. If I have ever had concerns I have been able to contact my team and make an appointment. I was apprehensive at first (8 years ago like yourself) but now, it works for me and I feel reassured that if I need to, I can contact my team.

I like the term ‘active monitoring’ as well rather than watch and wait which was first used when I was diagnosed.

Please keep us updated on your results x

5 Likes
3

Hi @Jules I used to call it watch and wait, but I now like to call it active monitoring as I think that describes it better.

I always get anxious before, during and after I have all tests, getting results and appointments and I think I probably always will.

But I count myself very fortunate to be monitored so regularly and also to be able to contact my medical teams if I have concerns or need to run something by them.

@Jules I will be thinking of you next week, please do let us know how it goes with the surgeon and be ever so kind to yourself.

6 Likes
4

Oh @Jules, I wanted to respond to this great optimistic post of yours and wish you well with your surgeon appointment and then couldn’t find it!

Even though I bet it can still feel worrying, I love your attitude about being on watch and wait. It dawned on me recently that my treatments are becoming more like active monitoring too (well, in a Polycythaemia vera (PV) sort of way) and I love the extra space in between testing and the sense that my body is coping.

I’m really so sorry about what’s happening to your appendix though, hopefully it’s not serious. I’ve come to feel similarly about all the monitoring we go through, like being in safe hands. That must surely be the goal of all people who work in healthcare.

May I ask how seeing the surgeon went? No worries if not. Your beach yoga came to mind yesterday when I did my first session of the year (although indoors, and now I ache in weird places haha). I just wanted you to know that you’ve been in my thoughts @Jules.

3 Likes
5

Morning @Duncan

Thank you so much for those kind words—it really means a lot to know I’ve been in your thoughts. I’m actually seeing the surgeon today, so your message came at the perfect time!

I completely agree about yoga; it really is the best for both the body and mind. My last beach session was a very chilly one back in October, so I’ve moved indoors for the winter too. I do yoga every day at home and also a couple of sessions with a local teacher. I’ve also taken up indoor cycling now that I’m retired! I’ve found it’s far too easy to lounge around all day when it’s so cold out, but I really need to keep active. It’s definitely way too cold for my allotment right now!

I’ll let you know how the appointment goes. So glad to hear you’re finding that same ‘safe hands’ feeling with your monitoring too.

4 Likes
6

Happy it’s working for others but I was diagnosed with Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (CLL)) in November 2024 and am still wondering who this elusive ‘team’ is! Everything seems to ask you to ‘talk to your team’, ‘make sure your team know…’ fine if you have one. I met with a consultant at the local hospital when I was diagnosed and he told me that I was very early stage and hoped never to see me again. I do have some issues at the moment and will have to go back to the GP.

I did go to a local blood group meeting to try to find out more about finding a nurse practitioner (who is apparently really helpful) but although someone did call me back (after being nudged by the Chair of the meeting who spoke with me) she did not offer much help and I would not feel comfortable contacting her again. At the meeting, the Chair also introduced me to another lady with Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (CLL)) (she had had it for 18 years); she said that she didnt have a team either and just ‘got on with things’.

As I am on watch and wait , I do feel that if anything very untoward happens re my results (blood tests taken at my GPs every six months then sent to a hospital, although not where the consultant I saw works) I will be contacted, so that is good, but I do not have any particular contact in a haematology department that I can just ‘ring up for support’. Am very grateful for the contact numbers to nurses given here as I am sure I will be using them at some point.

Just wanted to say that NHS care is very different across the UK and not everyone with Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (CLL)) will be getting monitored in the way they would like and have some special team cheering them on, at least not in the early stages. I am in the North, maybe that makes a difference!

3 Likes
7

Oh, and to clarify, it’s not just support, it’s information. I have other conditions that make Chronic lymphocytic leukaemia (CLL) a little more complex and it’s hard to fathom it all out alone. I am not saying that there should be some cheerleading team set up for me but it would be very helpful to have a regular familiar face at a haematology department who was my ‘go to’ instead of having to go through random GPs at my local practice and get referrals (or not!) for things that might have been easily resolved by a medical person with better understanding of my specific conditions. Phew, long sentence :zany_face:

1 Like
8

I’ve been really interested in this post but hesitated to reply numerous times. I’m so glad that it works so well for some. Having seen @Leigh65 suggest it’s not always a positive experience has freed me up a bit. We have been repeatedly let down by our team where we live in Scotland. Whilst we remained being seen, mostly, every 3 mths (apart from one 11mth period where my husband was simply forgotten) after initial treatment at diagnosis when hubby was critically ill. He was reassured that, if needed, the team would spring into action. Indeed “we’ve got you” was their standard phrase. Then, in a matter of 3 weeks, he became desperately ill last year and as his wife and advocate, I had to fight for him. I was not wrong when I begged them to make time for him, when I wept begging for help and when I told them he was going to die. Sorry for the dramatics. Because of me, he was diagnosed with a second aggressive blood cancer which needed 26 transfusions and immediate intensive chemo

I don’t tell this for sympathy or to frighten. I just want people to know that it doesn’t always work as it should. Be prepared to be your own, or for others, advocate unrelentingly if needed. Take care folks

4 Likes
9

Hi @Leigh65 yes, personally unfortunately care can different within the same trusts and regionally.

Just to clarify the lady diagnosed 18 yrs ago and myself diagnosed 22 yrs ago haven’t got a specialist nurse because I personally think that we were diagnosed before people on active monitoring were assigned them.

I have probably used the words ‘medical team’ on our forum and personally I mean it in the broad terms and include my GP’s and practice nurses.

I have been referred back by my haematologist (who I hear has since retired) to my GP surgery for my routine blood tests and monitoring with the words ‘if anything appears amiss, you GP will be able to fast tracked you back to haematology.’

I was told when I was first diagnosed ‘to take responsibility for my conditions’. I did not understand what it meant at the time but I now check my test results (although they have been checked by a GP) and ensure my routine blood tests are booked on time. I also say being pleasantly assertive works for me and If I have not received a promised call back I will chase it, unfortunately our NHS is very stretched. Also the haematology secretary can be a good source to chase things up.

I feel if I was taken ill at the weekend I could ring 111(in an emergency ring 999 or go to A&E, I could also ring the haematology ward at my hospital.

I make sure I have a medical folder with a clear, very brief, medical history. A list of prescription medications I am on, a copy of my last blood test and other test result and allergies.

I also have several medical conditions, I think we are all very complex, unique individuals.

Another thing you might have heard of are MDT’s (multi disciplinary teams) where a number of medical people discuss individual cases. It can give different perspectives on treatment and care. This worked for me with heart problems that I have. I was under a specialist hospital quite a journey away. The haematologist there said I can refer your care back to your local hospital as I sit in on their MDT meetings about heart care.

In my personal experience active monitoring or watch and wait is care.

@judesadventures I do not think your experiences are dramatic, they are factual and really valuable and show that we all have to advocate for ourselves and you have been a brilliant advocate..

You are never alone on our support forum and the Blood Cancer UK nurses are brilliant on 0808 2080 888

Sorry this is so long I got carried away, be kind to and look after yourself and keep posting..

4 Likes
10

Oh I’m glad I didn’t miss your appointment @Jules, I really hope it went well and you received good news. Bet your yoga practice helps a lot with any anxiety about all this, or at least I think it can help with mine! I’ve been tempted to get back into cycling (outdoors variety), if only so I can take our little dog further afield without driving, but for now he’ll have to contend with his daily local walkies and occasional hikes.

Dear @Leigh65 I really feel for you and have had similar mixed experiences with healthcare and treatments with my old local NHS in Brighton. Around the time of my heart attack I also had a cancer scare which dragged on for months, and I still can’t believe this happened but the surgeon did a biopsy in the wrong place after ignoring me describing and confirming the worrying area. He even had diagrams in front of him showing the right place! So I had to return and have another biopsy!!! Then later the same year I was rushed into hospital to the new cardiology ward with a heart attack and had amazing care, they treated me so swiftly that I have no scarring in my heart. However, the moment I was out of hospital it was like I didn’t exist and I had to chase everything up, reminding my rubbish ever-changing GPs about medicines I needed that the hospital was meant to have referred to them. Making it worse was the “surviving a heart attack” leaflet I was fobbed off with only really offered information for much older people and those who weren’t already active, and it was all phone-based which I hate!

If it’s any comfort, even working in the NHS before I left the UK didn’t make communications about “service users” between departments and different Trusts any easier. One NHS Trust would use one computer system which might not work with another Trust’s system. It was so frustrating for both staff and patients. I get the impression that it’s still early days using email and apps for the NHS, which would surely make it easier for patients to keep in touch with any named specialists in charge of our care if it was rolled out to all NHS patients. But as usual, funding issues and austerity measures seem to have held back this sort of progress for years. I happen to think you’re right about the differing care and services depending on where in the UK you are. I had some shocking care near the border of Wales on the England side, and my dad near Cardiff also has very variable care despite living in a capital city! I kind of like the idea that the NHS should be cheerleading us—their patients obviously bring in funding via the services needed.

And @judesadventures I’m so sorry to read of you needing to fight for your husband’s care despite what his team said, and at such a stressful time. Your frustrations come across so clearly and I think I would have wept too, it can feel like going round in circles being passed between people. You and @Erica are spot on about us needing to be advocates for ourselves and our loved ones, but can’t it be exhausting?! It can wear me down trying to reach someone with answers about my healthcare queries, and makes me feel like I’m being unreasonable or somehow greedy for asking for basic information. I wish it didn’t feel like so much effort for you, your husband is lucky to have you pushing for his care. I’m so sorry to read about his second cancer diagnosis. Forgive me if this is rather forward but would some counselling or therapy be helpful for you both now? It’s been invaluable for me tolerating my own diagnoses. Just an idea.

Perhaps NHS PALS is known to you @Leigh65 and @judesadventures but from what I understand they can be really great at improving care and being the go-between. I wonder if they could chivvy things along for either of you in more personalised ways? And like Erica says, the BCUK nurses are there for us on the free number 0808 2080 888 or email at support@bloodcancer.org.uk.

4 Likes
11

Morning @

A bit disappointing it would appear I may have celebrated a little prematurely, my haematologist has requested more biopsies. So I am booked in in the next two weeks or so for surgery to remove some entire lymph nodes and my appendix. The first biopsies showed reactive tissue only, which is good news but with my diagnosis of Non-Hodgkin lymphoma (NHL) she wants it completely checking. It sounds rubbish but I just know I’m in safe hands and that my team always have my best interests in mind so whilst the surgery isn’t going to be a walk in the park due to previous surgery on my abdomen for my lymphoma I know this is the right thing to do to be sure that what lit up the pet scan is ALL reactive tissue only.

3 Likes
12

Oh @Jules a bit rubbish sounds an understatement to me, but completely checking sounds good care to me.

I will be thinking of you loads and sending you healing vibes. Really look after and be ever so kind to yourself and keep us posted, but only when you feel up to it. xx

2 Likes
13

Thankyou for your thoughts dear @Erica.

You are very organised! I think having copies of everything and a blood cancer folder is a great idea. I need to get onto this.

Wish there was more comprehensive care across the board for everyone, it’s beyond frustrating. But grateful for this board where we can share all sorts, our frustrations as well as our joys. There is always something who has been through similar or has a different viewpoint that makes you think.

3 Likes
14

Thanks for your considered reply @Duncan, they are always thus! I am grateful to count you as my thoughtful fellow blood cancer friend.

A heart attack must have been so frightening and it seems to have been a long demanding road for you (although there seem to be a lot of positives now). It’s always helpful to hear how others have faced the challenges of chronic health issues, feeling alone with it all can make it much more demanding.

Yes, health care seems a total lottery in the UK, moving ‘up North’ did me no good it seems, although I know you are in the US and cannot fathom how to be ill there - my DP is American and once refused to call for an ambulance because of the incredible cost, it took a while to grasp that such things are free!

I did have counselling last year, it was free for six sessions with a different blood cancer charity and I found it helpful. I cannot afford private counselling, which has gone up hugely over the past few years… but have signed up for a Buddhist refresher course as used to be very into that at one point, I think that will help.

3 Likes
15

I hesitated too @judesadventures but all our experiences count and perhaps flagging up things that are out of whack will lead to change in some way, highlighting problems and inconsistencies as well as offering support to those who have also encountered them.

I am very sorry for all your experiences, they sound dire and frightening. Yes, yes, yes to advocacy. I know that when I was in hospital last (for kidney stones!) my DP had to bring me food as they do not cater to special diets and I couldnt go off piste with white bread toast and porridge oats (I also have hypoglycaemia). That’s a small thing, but this whole ‘having someone in your corner’ is not. Thank God your husband had you by his side, you sound magnificent. I hope things are much better now and your husband is in a better space. I think ‘advocate unrelentingly’ is a great motto!

3 Likes
16

Sorry to hear that Jules. That’s not what you wanted to hear. Keeping everything crossed that things go smoothly and sending lots of love X

2 Likes
17

Oh @Jules I am sorry to read that, wow so there are operations ahead. At least they’re acting on your medical needs swiftly. I’m sure your yoga practice can help with mindful aspects of tolerating all this, slow breathing too, through the next stages of your care. Doesn’t sound rubbish at all, being able to trust our specialists is wonderful and perhaps even comforting. Do please keep us posted about how you get on, I’ll be thinking of you.

You know @Erica, like @Leigh65 says, keeping copies of our relevant personal info is such a good idea. Sometimes my foggy thinking forgets the names of all these medicines or quantities on whatever days etc, so it would help to have a copy of that outside of my phone notes. I’ll see if I can fit it onto a credit card-sized folded bit of paper :thinking:

Oh @Leigh65 I think I knew your partner was American—must be quite the shock having free albeit flaky healthcare! I really miss the NHS despite my horror stories. The ambulance thing really stresses me out here so I’ve told my husband I’ll likely take a taxi instead, even though our health insurance covers ambulances. Hopefully I’ll never need one!!! Funny that we’re both Brit-American combos, I’m really missing home right now as I’m sure you can imagine, although we’re somewhat safer here in the Bay Area.

Glad you found counselling helpful and could get free sessions, I understand how tricky it can be to find and afford it. Same here, had to find my therapist in a different US state and online to be able to afford them! I wish therapy was more readily available via the NHS beyond CBT, sadly one of the reasons I left the UK as they stopped employing psychotherapists with my speciality not long after I qualified. I think it might be worth considering putting yourself forward to your GP for more counselling as the wait tends to be long. It might feel like a nice surprise when it comes round to being your turn!

Funny you should mention Buddhism as learning to live more mindfully myself has been helping me a lot, incorporating more Taoist, Buddhist and Shinto ideas and rituals into life. Waking with the sun, being outdoors rain or shine (preferably the latter!), taking our dog for his walkies… I love being more in tune with natural cycles again. Love that you’re refreshing yourself too, may it take the edge off some of these stressors for you, dear @Leigh65.

1 Like