June 21, I had a regular mammogram, which found a cancerous lump. After further scans, tests, biopsy’s, I was diagnosed with breast cancer, a cancerous lump on my kidney and follicular lymphoma. All 3 cancers are separate and are not related to each other. Breast cancer was the priority and I’ve had 7 rounds of chemotherapy and 3 weeks ago an operation. My breast cancer is clear now and just waiting for an appointment to start radiology. Have phone appointment with my kidney specialist in June and my third appointment with the lymphoma team on ‘watch and wait’. I’m a strong women with 5 grown up children and a very supportive husband. Overall I’ve been ok and, happy I’ve nearly conquered my first of 3. Covid was hard (although I haven’t caught it yet), but felt so alone having my treatment . I definitely crave for some kind of normality, but realise that might take a while if ever. Good news was that all my cancer is treatable, so I count myself lucky. I’ve read on this forum about the number of years people are on ‘watch and wait and can understand how this would effect you mentally, how does anybody cope with this ? Any tips ?
Hello @Sue2! Wow, three different cancers, that seems unbelievable. I am so pleased they are all under control at the moment.
What a question! How do we cope with watch and wait?!?!
I was diagnosed with follicular lymphoma 5 years ago when I was 41 with two children aged 8 and 11 and am also on watch and wait. It’s been given all different names hasn’t it. My consultant now refers to it as expectant management which is my favourite so far.
This is something I’ve really struggled with mentally over the past five years and something I still struggle with now. I understand the logic behind it, I know it’s better to prolong treatment and I know it might never need treatment. However, I feel so out of control and I am somebody who likes to be in control, not have something hanging over me, that constant shadow. Sometimes I just wish it would progress so I could treat it which I know is a silly thought because treatment isn’t the easy option!
Counselling has helped me in the past. Sharing on here has helped me even more because there are so many others who understand and that makes me feel less alone and less crazy when thoughts take over!
My bad days have become less. I know how to relax myself (for me it’s swimming) I know it’s ok to have bad days and I try really hard to focus on the here and now and not worry about what I might/might not get to do or see in the future with regards to my family. But oh my goodness, sometimes I can’t help but go to those places.
I really do think more needs to be put in to addressing the mental health need for people on watch and wait. The six sessions of counselling I’ve been offered isn’t what I need. I need long term support, regular check in sessions etc but off course that’s really hard to fund.
Sorry - I’ve rambled! In answer to your question; This forum and helpline is one of the greatest supports for my mental health and I honestly don’t know where I would be without it! I would tell you to talk about it with people who understand, that it’s ok to have bad days, use support services as you need to; find something that really relaxes you and always make time for it, and something we say to each other on here but find it difficult to do ourselves - just be kind to yourself because sometimes, it is ok not to be ok X
Thank you for your quick reply, yes fully understand the mental health side. Think sometimes it’s worse then the treatment, but try everyday to be as strong as possible. But I’m only human and the craving for normality takes over. I’ve been very up front with everybody about my diagnosis and treatment and finds this helps. Until I had cancer I never realised there was more than one chemotherapy product and various other ways to cure or suppress cancer, and especially the time it would all take. I only wish I knew more before diagnosis. Totally agree to talk to others helps x
Hi @Sue2 what a really good question about ‘watch and wait’ it is no wondersome people call it ‘watch and worry’ , I prefer ‘active monitoring’.
I was diagnosed 18 yrs ago and I still get anxious before my blood test appointments or if I feel a lump or bump.
I think as you said we are just human.
Personally I think my senses have always been on high alert since my diagnosis and you have had 3 diagnosis.
Yes counselling did help me and I think more specialist counselling should be available.
The most help has been on this forum, aren’t we lucky to have it.
I realise I am not the only one and I am not going mad,
You must have gone through so much emotionally, physically, medically and practically, be kind to yourself and if you would like to talk to someone the Blood Cancer UK support line is here for you.
Please keep posting it helps me.
Thanks for your lovely reply. I have spent the (almost) last year concentrating on my breast cancer and now most of the treatment should be easier and so glad my lump has gone thanks to the chemotherapy. When I was first told of the 3 different (not linked) cancers, I was told it was fairly rare, and unlucky. Now I’m looking forward to the next treatment, possibly the kidney. Although seeing the FL team every few months, so was trying to find out more about what to expect. I’m amazed how long you can have this without treatment. I totally agree it’s good to talk to others about their experiences and how they deal with everything. Will definitely keep talking and messaging x
Yes @Sue2 I have blood cancer and also re-occurring skin cancer on the top of my head.
I had to have a hysterectomy because of pre cancerous cells and also had breast cancer scare.
No family histories.
I have heard that 1 in 2 of us will get a cancer so I tell my husband I have his quota.
We are very special people and need to look after ourselves and be kind to ourselves
I too had a hysterectomy for pre cancerous cells in 2001. I’d had several operations previously for the pre cancerous cells, but they decided I’d be better off with the hysterectomy. Too be honest it was the best thing for me, and things were so much easier afterwards.
I too have no cancer in my family history, but think I’ve helped more than the 1 in 2, after being diagnosed with the 3 .
I lost my Mum last November she was 90, so had a good innings. I never told her about my diagnosis’s because I didn’t want her to worry. Although she would have of forgotten what I told her and have to tell her again every time I saw her. She did have slight dementia but I felt it was best not to tell her. Covid managed to stop me seeing her, but I did phone her often.
I currently work for Sainsbury’s, but obviously off sick at the moment. I must admit they have been really good and I speak regularly with my manager. I do miss it, especially socially.
I struggle with people telling how well I’m doing and how strong I am. When inside I don’t feel either, think I try to be strong so my husband and 5 grown up children don’t worry. I know 5 children sounds a lot, had 2 boys and 1 girl and we decided that was enough for us. But didn’t do anything about it and when my daughter was about to start school I realised I”d fallen pregnant (shouldn’t really of been surprised). My 1 baby became twins I found out around 10 weeks. After they were born we made sure my husband had the snip lol. So now they are 45, 38, 35, and the twins 30 and I have 7 grandchildren. They all definitely keep me going and I love having them all around. I do think the support they give me helps me to be strong. x
Hi @Sue2 I did not even think I needed a hysterectomy and bladder prolapse but it was the best thing that ever happened to me.
I am glad that Sainsburys have been really good to you. I have been their best customer for over 50 yrs !!!
I bet you miss the social side though.
Yes, why do we have to put a strong face or mask on and then I get so angry and cross when people say how well and strong we look, yes my mask really backfires on me as I am feeling **** inside and really struggling.
I admire you bringing up 5 children, it cannot have been easy for you.
I only brought up one boy and luckily he lives locally, but that was enough.
Both my parents died young and I have outlived both my school friends too, it’s a funny old world isn’t it.
Look after yourself x
It seems you have been through an incredible amount and it is no wonder that you are craving some form of normality again. May i ask how you have been coping in recent weeks since your operation?
It certainly sounds like you have fabulous support around you and 7 grandchildren sounds like just the distraction! I think Erica & Nichola have given excellent advise in that as we do all deal differently with the watch and wait, it is often great to share experiences and find things that work for you & your ability to cope with the uncertainties of it all.
Along side this conversation, we also have a number of other threads within the forum which discusses similar topics around W&W which may be helpful- When does ‘watch and worry’ turns to ‘watch and wait’ - Watch and wait - Blood Cancer UK Forum.
Also, please know Sue that our support service team would be happy to talk anything through with you if you ever need a listening ear at all - 0808 2080 888.
Take Care, Lauran
Hi Lauren, thanks for your message. I had my operation 4 weeks ago tomorrow. The Chemo had done its job and the lump in my breast had gone, but still needed to remove cells around where the lump was and also took 4 lymph nodes from under my arm. Got the results last week, and all were clear. But there was scaring which meant there had been cancer, but the chemo had worked so well for me and wiped the cancer out. I was obviously a bit sore after the operation, the scar was bigger than I thought, I had internal dissolvable stitches and glue on the outside. But now it’s almost healed and looking so much better, it’s hardly noticeable. I was told that there might be a bit of misshaping, but there’s definitely not. I joking said I wasn’t worried what it looked like as I had no intention of doing ‘page 3’ any time soon .
At the moment just waiting for an appointment with Oncology to sort out radiology. Then hopefully on to the cancerous lump on my kidney. Also got appointment to check on my follicular lymphoma in June.
My biggest struggle is waiting for appointments, it would be better to be given a date, no matter how long away it is. I sometimes feel I’ve been forgotten even though I haven’t.
I try and stay positive as much as possible, but now that my breast cancer treatment is hopefully coming to a close, I am worry about what next. After finding this site, I was shocked at how long people with FL we’re on ‘watch and wait’ and how to cope with having it hanging over you. As I said I am craving some sort of normality, I have been off work for about 10 months and amazed I would love to go back (sure I’ll regret that when I go back). I can handle the effects of Chemo and all the poking and prodding, but definitely think the mental side is far worse (Covid didn’t help).
Hi @Sue2 I think what you say is so, so true.
Yes, having treatment in Covid times is really hard.
When you are going through treatment I think you are obviously so wrapped up emotionally, physically, medically and practically with it and one thing is happening after another.
Suddenly that has finished and now you are back to the horrible business of waiting for appointments and actions of others and your mind has time to start worrying again and also craving normality as you see world returning to it.
Yes, it is the emotional side that is the hardest and I expect your emotions are all over the place.
Personally I found counselling helped me, it is not for everyone and your GP might be able to help you source it locally.
If you would like yo talk to someone The Blood Cancer UK is there for you.
Please keep posting on here that has also helped me.
I was finally diagnosed with follicular lymphoma inJune, after getting a lump on my neck, I was offered Radiotherapy as was told I had early stage and possible Cure, not sure what cure is now
I have completed radiotherapy six weeks ago, and think maybe watch and wait would of been a better option, hope I’ve made the right decision, where you not offered treatment?
My husband has multiple health problems and I felt I need a quick fix so to speak! My lymphoma was in right tonsil and salivary gland, stage 1/2 Is a cure just remission?
Best regards Irene x
Hi @Tessa1924 it is great to hear from you and sorry that you have been through so much since June.
It must have taken a lot out of you emotionally, physically, medically and practically and you also have a husband with multiple health problems, it cannot be easy for you.
Please look after yourself as well as you care for your husband.
I look forward to hearing more about you.
Be kind to yourselves
Hi @Tessa1924. I had an operation to remove my parotid gland and then 12 sessions of radiotherapy. Sounds similar to what you had. How did you find it? I’m now on active monitoring to x
I think I’m doing ok, although I tested positive for covid on the last day of my radiotherapy! So it was difficult to know which symptoms were which!
I also had twelve sessions (24 grays) of 2 grays per session ,found the mask a bit difficult it’s was very tight and had a bad headache after each session.
Not sure if I will get a scan after twelve weeks will have to ask, saw lymphoma doctor two weeks ago.
Did you have any other treatment? How long have you been on watch and wait?
Thanks for your reply Irene.
Hi there @Tessa1924
You have been through an awful lot and thank you for posting. Our forum is great way to share experiences and gain that much needed support.
I am sure you have made the right decision along with your medical team. Do you have a Clinical Nurse Specialist that you can call upon to talk through your questions or worries?
In terms of COVID, when did you test positive and did you get an assessment for COVID treatments as you are eligible for this? Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK I hope you are feeling better now?
Do keep in touch and pleadse know teh Support Services Team are on the phone if you should need to talk: Blood cancer information and support by phone and email | Blood Cancer UK
I had exactly the same. The mask was extremely difficult - so claustrophobic and I had to talk myself down every session! No treatment after radiotherapy - just the op before. I’ve been on watch and wait for 5 years. Up until this year I had four monthly appointments - now every 6 months. It is tough, but it has got easier but it took time. I had counselling which really helped as I struggled with watch and wait - even though I know it’s the best thing to do
After my appointment with lymphoma doctor I told her was having a tough time, having been on a whirlwind of tests and waiting before treatment and now dealing with the reality of CANCER!
Plus all the stress with my husband (advanced prostrate cancer, followed by a Parkinson’s diagnosis) she advised the Maggies centre on the hospital site, Not something I would normally go for
but felt desperate, managed to get some counselling had two sessions so far, will see if this is helpful. NHS waiting list was months, so lucky to get some help, really praying that I will be ok and treatment has done the trick, standing back from the situation makes me realise how stressful my situation has been.
Wondering why you needed an operation?
When I first got results, I also expected operation so was surprised this was never an option, but lymphoma is such a complicated condition.
Hi again. I had an op as the lump was impacting my facial nerves so they decided to remove it.
I’m glad you are getting some help. I’ve found that I’ve needed counselling at different points in my journey, but definitely in the beginning like yourself so I’m glad you have access to it.
You have so much going on already without this so I can imagine how stressful it all must be. It’s very hard for others to understand as well.
Just give yourself the time and space you need (I know that’s difficult with children and everything else that is going on). All of our journeys differ but lots of our thoughts and fears are the same.
Sending you an extra virtual hug. Please keep posting. Always here if you need an ear x
Thanks for taking the time to reply, will keep in touch x😊