We are a couple of years on from Gav’s diagnosis, and I have had a long time to think. Well, we both have, but I’m the gobby one, so here it all is. Gav doesn’t mind that I wrote it, he knows how things buzz round my head until they spill out, so although I say ‘I’ alot, it is ‘we’ really.
I think I’ll end up writing a few posts, otherwise you’ll be ploughing your way through a BOOK! haha So this post is how I felt/feel about telling people – and why it took so long to actually tell EVERYONE and how I feel about it now. And I feel like I might touch a teeny bit, on breaking the taboo that surrounds talking about cancer with the people who are facing it.
As loads of you already know, over Christmas 2014, we were given the devastating news that Gav most probably had a type of blood cancer. It was diagnosed properly, on Jan 2nd, 2015.
He was diagnosed with an incurable (but not terminal) type of Lymphoma, and you can read all about it, here
For a really long time, I couldn’t talk about it without crying. It took me 9 months to eventually post about it on Instagram and write the blog post. I felt like I had to be really strong to write it, and I definitely didn’t feel strong or safe, or confident for a long, long time. We took a very long time to even feel strong enough to tell our friends. Initially we only told our closest friends, but after a while we felt brave enough to start telling others and be A) able to answer their inevitable questions and B) cope with the flood of sympathy.
I think that because Gav’s diagnosis needed a bit of explaining, it took us a long time to be able to do that explaining with out crying half way through. Suddenly I’d find my voice just going, tears falling uncontrollably and unable to to do the explaining and reassuring that I needed to be able to do. Because I felt I had to reassure who ever I was telling. I could’t bear for them to feel bad. I know, that sounds weird, but by reassuring them, I was kind of reassuring myself, too.
Gav, strong and sensible as always, sent a beautifully worded email to his circle of mates. And I sort of took it upon myself to make sure everyone else knew. And it took so much energy. Energy he didn’t have.
Sometimes I’d feel like we had a massive sign above us saying ‘Gav’s got cancer, can’t you tell??!!!’ And I wish they’d see it and ask us. But of course, there was no sign. So unless we said it out loud, no-one would know.
And telling people was incredibly hard, after all, how do I casually drop it in to a conversation? How do I look at that person and know I am about to drop a bombshell? Posting on Facebook was NOT going to happen. Should I send a round robin?? Or tell a friend in the biscuit aisle of Sainsbury’s when I bump in to them? (the tissue aisle might have been an appropriate aisle come to think of it) And had they already heard? and haven’t been able to tell us they know? because that might upset us or make us feel like people are talking ? (which of COURSE they were?! it would be weird if they weren’t!)
I had a couple of situations where someone would rather pretend they hadn’t seen me, than face me, and say hello. And I totally understand that. I am ashamed to say that before it happened to us, I might have been the person that pretended not to see me. After all, why would I want to upset me??
I understand now, that to say NOTHING, is a gazillion times worse, than saying the wrong thing. Say SOMETHING. Anything. You aren’t being nosy, you are caring. You can tell yourself you don’t want to pry, and square it in your own head by making it ok, and then carry on walking on the other side of the road, and you will have forgotten all about it by the time you get back to your car. But you can bet your bottom dollar that if you are brave enough to approach that person, they will appreciate you asking SO much. And for me, I’d be so grateful that A) I don’t seem to have leprosy after all and B) I know the courage it took for you to approach me C) I’d also be heaving a sigh of relief that I don’t have to use masses of energy to start telling you and working out what to say.
Even if your friend’s eyes fill with tears and she hurries away, I promise she won’t think badly of you for trying. Bad stuff can really make people feel lonely. Don’t make anyone stay lonely if you can help it.
27 months on (yes I am counting) and I am happy to say that my tears have stopped falling (as much) and my voice remains even if I talk to you about it (my heart rate still jumps but you can’t see that)
You might be wondering why we felt we should tell people when it took so much energy to do so. For us, telling people seemed to reduce the pressure of it all. It meant we weren’t living a lie or living with a horrid secret. If we had just put a big front on and kept it all to ourselves I think lots of things would have been affected in a negative way. The boys might have felt unable to share their worries with their friends, if they needed to. It could have become the worst best kept secret – with everyone knowing something was up and Chinese whispers going round would have been horrible for everyone. And by voicing it, by saying CANCER out loud, and using that horrid word more often than anyone would like to, somehow made the word itself less scary.
I Know all cancers are different – and the treatment Gav had, gave no outward clue to what was happening. He looked exactly the same – his hair didn’t fall out, he carried on working – after the initial time he took off, post diagnosis, when we were still reeling. Having to tell his staff (he runs his own company) took a lot out of him and it was awful. But the support he received from them was overwhelming. Turns out they love him, too.
And for me now, telling people what has happened, from a positive angle – makes it far easier, than HAVING to tell people one day, if something changes. Does that make sense ? Sort of damage limitation?
I also appreciate that everyone is different – this is just how I see it. I’d heard an old friend was going through a terrible time, regarding the Big C, in her family, and you know, I hardly ever see her. I definitely wouldn’t be bumping in to her, so I could easily pretend I didn’t know. To not message her, to not ‘pry’. She would never know I knew, after all.
The old me, from 28 months ago might have done that. After all why would I want to upset her. Think about that a bit more. To not UPSET her??? I know without any one having to tell me, that she is beyond upset, I KNOW her heart will be breaking in to a million pieces. By messaging, I know I didn’t upset her further. Nor did I even start to mend her heart. I couldn’t even try. And she wouldn’t want me to. But to tell her I know what’s happening, and I am thinking of her, and I am sending her all the big, useless hugs in the world, I hope she just felt a tiny bit more supported for a moment. To know someone out there, knows about what is happening, and is brave enough to say, really helps. It helped us. Friends stepped up out of no where, and we appreciated their support SO much. It gave us strength, when we didn’t feel strong.
On another note, a few people we thought were friends, turned out not to be. And stayed very much looking the other way, on the other side of the road. And that’s ok too. The C word doesn’t half make you filter what is important, and what isn’t, in life. Which is going to be my next post. How stuff like this changes you. And how there is always a silver lining.
Here’s to silver linings
As ever, thank you for reading
Beautifully put as always Sally. An old friend, who had lived abroad for years so we hadn’t seen him, recently told us he has a form of blood cancer and is going through treatment. We met up with him and his wife and I think he appreciated being able to speak candidly about it. It can be difficult knowing what to say, not wanting to make things any worse but, as you say, it is worse to try and avoid the subject.
Yes! That’s exactly it! To be able to talk about it ! It’s such a relief – so I totally understand how your friend feels ! Lots of love xxx
What a beautifully written piece. Very brave and wonderful that you are talking about this Sally. X
Cara, Thankyou so much xxxxx you’re lovely xx
You are amazing…both of you. An incredible post Sally…it has really made me think. Sending virtual hugs xx
Thankyou Kate ❤ virtual hugs gratefully received! Xx
Such lovely words Sally. You talking about this will have helped so many people who are in a similar situation. You come across as such a lovely, fun, positive person. I think you’d make a wonderful counsellor if you were ever thinking of a career change! Sending you all lots of love.
Hi Claire – I hope so – I hope that someone can identify with my ramblings and feel less alone if they find themselves in a similar situation❤ on a lighter note, sometimes I feel like a counsellor in my job! Haha – it’s amazing what people tell me while I have them in the chair ! (I’m a hairdresser) xxxx
I’ve just written a blog post on the year anniversary of my brain haemorrhage and aneurysm and how it’s changed my life, I’ll publish it tomorrow on the year to the day. But I just wanted to say how similar it is with cancer both life changing events especially with friends. Secondly I used to be a cancer specialist nurse (for women’s cancers) I did that job for over 20 years until a year ago ( because of above) and one thing I used to share with my patients, are other patients and families feelings, views etc. Has you know it’s the scariest thing ever but to read someone else’s words about what your going through and how you come out the other end is very uplifting and inspirational so I think it would be lovely if you shared this wonderful peace of writing with your CNS so she could share it amongst her patients or put it on the wall for others to read. Just a thought and only if you wanted to of course.
But most of all I wanted to say well done in putting it in writing, it’s a lovely peice. And Thankyou for constantly making me smile through my dark days.
Hi Elaine – what a lovely message – Thankyou ! I’d be very interested to read your post – could you tag me somewhere ? Would that be ok? And yes, life shifts, doesn’t it, after something like this – I have another post planned about how people might expect you to just be back to normal (in our case, post treatment – but maybe in your case too, once everyone can see you are ‘ok’) and, certainly for us, it’s a different normal etc etc
I know this sounds weird, but we don’t have a designated CNS – we do have a new oncologist though, so I might ask her, if she has any patients that my posts might help ?
Lots of love to you, a year on. You got through 100% of your dark days xxxx
My Instagram is homewithinthevalley. I’m posting the post tomorrow, anniversary day, blogging truly has been a therapy for me and hopefully tomorrow will be a closure on last year, so I’ll tag you in tomorrow that would be lovely. It is strange how different illnesses can have the same affect. And yes life certainly changes. One thing my consultant said to me was “to people on the outside you’ll seem the same, but inside you’ll be a complete mess ”
And yes my dark days are less now, still hovering especially when people ask what made us move house and then I usually get ” I know someone who
Had that and…….” then I fill the died word in. I bet that’s a bit familiar for you lol.
Thanks again Sally.
Have a great day
Think I’m off building pods ( long story and future blog post )
I totally get that – you look the same so there for you are the same. Except you aren’t. AT ALL. And yes, everyone seems to know someone who died don’t they!If it’s any help at all – I know someone who DIDN’T! and she’s YEARS on, now. Knocked her front teeth out as she fell, (she was playing netball) So she has a tiny external scar. I expect the ‘internal’ ones are a bit deeper, though. xxxx Lots of love xx
Beautifully written, I sadly lost my sister nearly 2 years ago after a diagnosis of mesothelioma. It was 7 weeks from diagnosis to her passing so a big shock. Friends were amazing and still are being. You find strengths you never knew you had and before this happened I probably would have been the person that avoided you but know I would be the first one there just letting someone know that I’m here and I understand. I, like you always remain as positive as I can, it really makes a difference. Sending you and yours virtual hugs and well done for addressing this subject. Wishing your husband all the best! Love Paula x x
Crumbs Paula, that’s incredibly quick, what a shock – I feel so sorry , that must have been a terrible time, and ongoing xxx you are right though, the world sort of shifts, doesn’t it, and changes you. Thankyou so much for commenting, you are very brave and lovely xxxx
Bless you , thank you. Love your Instagram account and stories! Keep up the good work!! X x x
Wonderfully written! Sometimes words are hard to find, so when I’m out and about, I look for postcards with meaningful messages. Every month or so I send one to my auntie and uncle and the kids just to pop a smile on their faces, and you know what – it works! We don’t live close enough just to pop the kettle on, but there’s something just lovely about sending something in the post xxx
Oh wow I LOVE that idea!!! That’s brilliant Thankyou ! Xxxx
What a lovely post. So heartfelt. It’s funny, not ha ha funny, odd funny. I took the opposite approach. I think because I looked so different and because my brain tumour caused such obvious symptoms I had little choice. Couldn’t agree more how you find out who your real friends are. Which is a relief really, because life is special and who wants to waste time on numpties! Like your lovely hubby, living with an incurable cancer is certainly not something I ever expected, I’m just so bloody glad to be here. Every day is a blessing. Oh and bollocks to cancer. Much love To you Sally, it’s people like you that support the ones who’ve been hit with ‘it’ that keep us going xxx
Hey Nancy – Def no time for numpties!!! And I am grateful for the clarity. Bollocks to it all though!!! xxxx So glad to be your mate xx
I’m so glad you are in a place where you can talk about it and give comfort to others. Your comment in your previous blog about lifting the veil and seeing things clearly strikes such a cord with me. For me peoples reactions are the same as when you lose someone . Saying nothing is worse than saying something. And life is far too short to spend a minute more with the people who don’t care. The worst bit must have been telling your lovely boys. Xxxx
Couldn’t agree more! It’s so many things, and not just cancer, that sorts the wheat from the chaff!! (we went off piste when we told the boys. Mcmilian suggested gathering them together, turning the tv off, etc etc, but we thought that would just feel scary! So we told them in very matter of factly, and said we’d never lie or not tell them something, but he’s ok and the doctors aren’t worried so nor are we. And to trust us that if we need to worry they’d be the first to know. Then they asked if they could have some crisps and gave their Dad a hug. Then we asked them not to google it as they’d probably google the wrong thing ad be scared. They all promised, and they never did. I have a link to the explanation and info on his diagnosis that the big two have read. And we are all good. Because Gav is so well. Please God he stays well. )
What a well written article and so heartfelt. Really good to hear that the treatment worked but you must have both been through the mill. I know when I lost my Dad I got almost aggressive if people who knew didn’t say anything. It definitely helps to talk even if it’s just a one line acknowledgement, we don’t have to be so British anymore. It’s good to talk – as Prince Harry said last week! Knew you moved in the right circles,. Really enjoying your blog by the way and look after your lovely Mr H! Ttfn Sharon (couchpotato)
Absolutely! I couldn’t agree more ! And I’m sorry you lost your Dad 🙁 Thankyou Sharon xxxxx
Sharon, I am sorry – I thought I’d replied! Yes, you are so right, it IS important to talk!! And to face these things! No more ‘sweeping it under the carpet’ or ‘stiff upper lips’ MUCH healthier to, just SAY stuff! I am sorry you lost your Dad xxx Love S xxx
Sally I really enjoy reading your blog. This piece has been especially helpful for those of us who haven’t had to face serious illness in our families. The natural tendency is to shy away from people, thinking that I would only bother them by speaking to them.
Looking forward to your next post! Keep up the good work and I hope you and your husband keep well. XXX Jenny
Thankyou Jenny – you’re right and that’s just how I felt ‘before’ . Thankyou so much for commenting – it means loads xxxx
Dear Sally. Bless you and your hubby for being such brave ‘get on with it’ people. Thankyou for sharing this with all your followers. You write so beautifully about such a difficult subject. Our nephew was diagnosed with bone marrow cancer nearly 2 years ago. He is currently in remission after a long, hard battle which has left his kidneys permanently damaged. He has just heard that he has been accepted onto the transplant programme so we pray for a successful outcome from that at some future point for him. He has dialysis 3 days a week at the moment. I know that all the messages and support he received from friends and family through those long, difficult months really gave him the strength to fight this awful disease and try to live his life as normally as possible. My love to you and yours . Take care x
Jan, crumbs what a time of it you are all having – I really hope they find him a match, very soon. The outcomes are getting better and better so I pray that is the case for him. I’m sending lots of love and positive thinking xxxx & big, not-so-useless-hugs, too. xxxx Love S xxx
Sally – what a lovely, heartfelt post. About a week and a half after your kind response to my own post on the Macmillan FNHL forum, I sought your blog post out again to read it more clearly, and found this new post. I just wanted to say thank you. We are still in the ‘fallout weeks’ as you so aptly call them, and still don’t have accurate and full diagnosis. (PET scan and bone marrow results to follow.) We are letting people know in ‘layers,’ and as your post suggests – responses are mixed. I may well be in touch again soon with some specific questions, (treatment for eg – consultant suggesting that his hunch is either watch and wait or just rituxihab,) but mostly because I am keen to see how families cope.) Anyway – I am now rambling – (A lovely friend and colleague says I have a ‘butterfly brain! -) but I just wanted to thank you. Your posts are giving both strength and clarity – and I thought you’d like to know that.
Love Wendy x
Please get in touch whenever you need to and I will do my absolute best to answer your questions. I am so glad I actually opened the McMillan email that day, as I hardly ever return to the forum. When I joined it I panicked as it’s quite a quiet forum and I presumed everyone was dead! But it turned out that, like us, they are all getting on with their lives (all? mostly all – anyway you know what I mean I hope!)
Anyway it must have been fate. And I am SO happy that you got in touch. I am a hairdresser, and one day, I braved it and started telling one of my clients what had happened. He asked SO many pertinent questions – which was odd, as most people just ask what the difference is between NHL and HL – anyway, turned out he had had the EXACT diagnosis that Gav has – and he was diagnosed at 48. He is 70 now. And after initial chemo (no rituximab in those days) he has NEVER relapsed. Still goes for yearly checkups and yet they still won’t call him cured. He is MY HERO. And just knowing him has helped me. Us.
If you ever need to email me – please do. Sending you so much love, especially in the hideous Free Fall Weeks that you are in at the moment. URGHHHHHH – Massive hugs. S xxx
Thank you. I like your story about your client.(!) I will, most definitely, be in touch.
please do – I read a comment on the forum regarding juicing – we regularly have spinach smoothies – Our thinking is, it boosts the immune system no end ( we add loads of stuff, ginger, berries, seeds, various root powder all sorts, can give you ideas if you want them) And as FNHL is an auto immune disease, to boost the natural immunity seems vital. Plus it makes you feel like you are ‘doing something’ . xxx
ps ramble all you like 🙂 xxx
Hi Wendy and Sally! I responded to your post on the Macmillan site. I am Fruitful, with the brilliant diagnosis from the lovely oncologist. Wendy, my heart aches for you still being in the free fall weeks. They really are the worst! The not knowing what you are dealing with, and how bad it might be, really is much worse than having a definite, tangible diagnosis and treatment plan. I can’t begin to imagine how stressful Watch and Wait must be!
But I wanted to say how I agree about how it really does sort the wheat from the chaff in terms of friendships. I’ve been overwhelmed with love and support from people who were hardly on my radar, who have become invaluable friends walking supportively alongside me. Yet there are other friends who I had considered very close friends, who I haven’t even wanted to tell! It’s been really eye opening. And sometimes, when I HAVE told them, there hasn’t been any response beyond “Thanks for letting me know. Take care.” Certainly, my friendships will never be the same again.
One of those lovely supportive friends is coming to sit with me this morning during my chemotherapy treatment. Now THAT is loving support! And with this treatment, I am half way through! Whoop whoop whoop whoop!!
Very much love to you both, and loving getting to know others on a similar journey
Big hugs xxxxx
Sue! yay! I am so glad you messaged! Thankyou for ploughing your way through ! I appreciate it so so much and like I said to Wendy, I feel like I am writing directly to you both, and others who might stumble over my posts whom it might help in any tiny way, even if it’s only to know we aren’t alone!
Writing the posts for strangers I have never met, but who are connected to me, and each other, is my main reason for writing. Although it’s quite handy to have everything here and I can say to friends that it’s all here if they want a catch up. It’s also easier to write, than say out loud. If that makes sense!
I too find it fascinating, the wheat and chaff thing. None of it bothers me – I just really appreciate the people that are round us. The ones that aren’t – well, what evvs. It’s an eye opener that’s for sure!
Sue, I hope you’re feeling ok this evening and I am glad that the Bendamustine is being kind to you. There’s a lady I follow on Instagram who has also had bendamustine and she too has just finished her 2 years of rituximab, like Gav has. She lives in Canada and is an absolute rock. I have been lucky enough to meet her twice.
She is back on watch and worry (!) like we are. Gav is 7 months post treatment now, and it’s not as all consuming as we feared. Of course the worry is never far away, but it’s no longer the first thing we think of when we wake up, or the last thing, as bed time, which is very refreshing!!
I hope we hear from Wendy soon, thinking of you both, lots
love Sally xxx