When do you tell someone that you have blood cancer? This might be family, friends, children, employers, colleagues or a new relationship. I know I was in such shock when I was diagnosed I blurted it out rather starkly to my husband, my adult son and my employers which with hindsight I regret. Now most friends know, but a lot of other people don’t. Has anyone any thoughts or experiences?
@Erica what a worthwhile topic! thank you so much for starting this Erica and it will be so interesting to hear what our lovely forum members have to say.
What about your experience Erica? did you find that there were things which helped you do this, or anything looking back that you may have changed at all?
thank you so much again for starting this Erica!
@Erica It often depends on circumstances and type of blood cancer. In my case I had been admitted into a cardiology ward as an emergency, and had a battery of tests. When my husband visited the next day I had been given the prognosis that it was unlikely not to be cancer…to which I said to the doctor, you mean it probably is cancer. He said yes, then disappeared. He was not the doctor dealing with my case but it was one of his students who came back and asked if I was ok. After I told G he went home, poured himself a pint, and walked past our youngest without a word. After half an hour he told our son, then had to ring our other children, my parents, workplace, and emailed my closest friends, who then spread the word at Church, extended family and friendship groups. I could not hide what was happening
@Pisces56 Thank you so much for sharing your personal experience, I was really struck by how vividly you could remember this- thank you so much again, I can only imagine it is likely to have taken a lot of courage to write this. Looking back @Pisces56, did it help having most people be aware of your condition earlier on, or would you have preferred a bit more time before as you say the word got round?
My experience has also been that I have to tell, and frequently remind, other medical departments of my other medical conditions as well as my blood cancer and the fact I am allergic to a certain antibiotic. When I had to have multiple tooth extractions due to infections I had to get my dentist, doctor and consultant all working together to ensure I had the right antibiotics before, during and after the instructions.
@Erica It does sound like you are still going through so much ever since your initial diagnosis Erica. I see you describe how it’s something you have needed to reexplain to other health professionals quite frequently- what’s that like for you?
I do not mind re explaining my health issues to all the different health professionals. My GP told me early on that I needed to take responsibility for my diagnosis and I actually feel empowered by it and I also think I am the expert for myself and (it has taken a very long time) an equal with my medical team now for decision making.
I don’t think I really had much choice. Most people who I was in contact with knew there was something seriously wrong. I had been in hospital for a week 5 months beforehand and had been discharged 6 weeks later despite deterioration in my health. A couple of weeks before being referred to the 2nd hospital for where I was diagnosed I had been for a meal with my family and my daughter’s future SIL. I did not have the strength to open the fire door from the toilets, and she commented to Rachel that she thought I was very ill. I also had to have a conversation with my son’s school as the head had heard him tell someone to f*** off the day after my diagnosis. They were very good helping him over the next couple of years, and when he went to University his tutor wrote a letter to explain why his grades were not as forecast
Such a good topic! @Erica and @Pisces56. It is amazing how we remember those conversations, some because we had no choice, some just blurted out and some
not knowing how to go about it. This is different for everybody isn’t it and depends on your circumstances. However, I think it’s one of the hardest parts. I told family, close friends and colleagues but limited what I told my children (age 8 and 11 at the time) because we thought it was stage one, involved an op, radiotherapy and then done! Unfortunately in a follow up PET scan an area showed in my abdomen. I don’t know if this would’ve changed what I told the children Initially. I’ve mentioned in a previous post that I’ve gone into more detail about it in lockdown without using the ‘C’ word but I’m know my oldest daughter is really aware of my situation. She panics about going out and bringing something back and can get quite emotional. But for now, we believe they know what they need to and I’m confident she will ask questions, especially when I have my PET scan in July. Colleagues is a hard one isn’t it. I don’t think everybody needs to know but where I’ve been off work I’m sure more people will ask. As time goes on, especially when you look well and are not in treatment, it gets harder. Do you need to tell people of not? When I’m having a bad day I wish everybody knew because I can be in a rubbish mood and I’m sure people notice. It would be lovely to just be able to say ‘I’m having a bad day’ without having to worry about how I’m coming across and trying to be upbeat! There is no right or wrong, just what feels right for you. For me, telling the children is something I still don’t know if I’ve got right. But they are happy, gorgeous girls and I think they are confident enough to ask more if they want to and I know them well enough to check in if I know they are not ok. A work in progress!
I was with my husband when I was told. However we had to tell our three daughters. I am sure we let them know soon. What I do remember is that I found it hard to tell my Mum. I was 54 and she was quite elderly and living alone. I chickened out and told my brother who lived only a few miles from her and asked him to tell her. I also told my boss (I was a GP Practice Manager). I told my senior team and asked them to let the rest of the staff know. I recall the nurse being amazed at how calmly I said it. One of the other senior team was so upset she immediately burst into tears. I can’t recall when I told friends but I never hid it. Unfortunately shortly after diagnosis I was admitted to hospital so it became more obvious. Unlike some people’s experiences my friends have been fantastic and stuck by me and still do despite being diagnosed in 2006 with Multiple Myeloma. So I am a long term survivor too.
What a good topic! My wife was with me when I was diagnosed with Leukaemia, and we discussed who to tell and when. I needed to tell some family members (siblings and children) because my Leukaemia may have a genetic element. We arranged a Skype call, so that we could tell our children (who had left home) at the same time. We anticipated that they would do a Google search, and advised them to be careful about which web-sites to look at. Too late! Even as we Skyped, one of them had begun a Google search! We told other family in telephone calls, and close friends by email. At work I told my line manager, and asked him to inform other more senior staff. Be prepared for some surprises. I told work colleagues at our next information-sharing meeting. I explained that I had Leukaemia, but was not displaying any obvious symptoms. As I paused, one colleague added: “… such as dying.” Another colleague, sitting next to me, subconsciously moved away from me, as if Leukaemia was infectious. Telling people early on required most thought. My wife and I are now no longer embarrassed to explain hygiene practices to others, to remind medical staff of my condition, or to remind consultants that I am allergic to one antibiotic.
You touch on how we sometimes have to treat people’s reactions with humour, and that sometimes brain, speech and actions can be instinct rather than being designed to hurt. I also agree that we all need to own our treatment, letting others know what is acceptable re hygiene, visits, that not all medical staff can remember individual treatment plans, allergies etc
Can family members be tested to see if they have more chance of developing leukaemia, and how do they feel about it?
Thanks. I quite agree that it is best to consider some comments and behaviour as amusing rather than insensitive or inconsiderate. We probably all have a few anecdotes of how some people have reacted. No testing was offered for my siblings (who seem to be clear) or for our children (who are currently too young for a diagnosis). No family members have expressed any concern about the possible genetic risks, and nobody has assigned any potential blame to my parents or to me!
That’s good. One of the funniest was when I was called for my RT session and the nurse looked at me, said that she had not called me. I am mixed race, but my name is Smith. Rather than take offence I laughed and said that if she called x Smith that was me, and my maiden name is Irish. Did she go red?
Thanks, @Mike53, you really show so well how everyone reacted so differently. Yes, I had a chuckle at the insensitive ones. Nobody knows how to react and embarrassment means responses can be even worse. I also asked my boss to tell everyone and when I went into the office all reacted differently, some avoided me, some sort of looked out of the corner of their eyes not wanting to make direct eye contact, some came straight up to me and said ‘how are you?’. I couldn’t explain to people what I did not understand myself. Yes, blood cancers can be different, it is a hidden condition and what really annoyed me was people saying ‘oh, you do look well’, ‘oh, you look a lot better’ when I was feeling really fatigued and yukky. Also with some blood cancers treatment is not immediately started while the common perception is that you get a condition, it is treated and you are cured. As for Googling when I was diagnosed all I could find was a prognosis of 5-10 years and 16 yrs later I am still here. The only time the word Leukaemia was heard of, and that was on TV, was childhood Leukaemia’s and the prognosis was not good. Things have come a long way in those years. One friend offered me her savings so I could have treatment immediately, wow.
After phoning immediate family members (I have a big family) and having to explain the same thing many times over, plus trying to answer their questions, which we didn’t know the answers to in most cases, my wife decided to write an email to tell friends and colleagues. This carried on during my treatment. She would write an update either every few weeks, or sooner if something significant happened, and then send it to a large group at once. I was suffering from fatigue and Caroline was still working full time so this avoided the regular phone calls or emails asking what was happening and how I was doing, whch can be exhausting to have to answer several times a day.
When I was diagnosed 13 years ago my husband used email in a similar way, and used to print off emails we received if I was in hospital. Technology has really advanced since then, as I found when in hospital in March. Previously I could only text on my mobile (as I suffered hearing loss during treatment, and had to wait two months for hearing aids)
I didn’t really have a formal “telling” people. I think I did it quite subtly to not make a fuss. Once a scan had confirmed there was a problem it was more that I was relieved that somebody was finally taking me seriously as up that point the medical professionals had accused me of making a fuss about nothing and told me I needed to go home and start doing some physio as I was taking up a bed. Once they told me that I had cancer I didn’t really feel any shock initially just gratitude that I wasn’t going to be made to go home without being able to walk. I gradually slid the topic into conversation with family during phonecalls over the next few days. I think as a family we were sort of getting used to cancer as my brother had died of pancreatic cancer 3 years earlier and my sister was still having treatment for breast cancer whilst her husband was having treatment for bowel cancer. I think it hit my mom hardest as she’d had four cases of cancer in her immediate family including 3 out of 5 of her children. It took it’s toll on her and she died during my 6 months of chemo. With friends I didn’t make an announcement, I just posted on Facebook that I was going to Guys Cancer Unit for the day to begin treatment and people entered into conversation with me about it after seeing this. I didn’t even know that Myeloma existed up until that week, let alone anything about it. I obviously had to be more direct in telling my employers. They immediately went about getting funding to get someone to do my job from the autumn onwards expecting me to be gone some time. I messed up their plans by fighting back quicker than expected and being well enough to come back before my replacement began work I also gave permission for my boss to tell everyone at work so that there wouldn’t be any awkward questions when I got back and I could just get on with life.
I can relate to your comment about being taken seriously. My GP was fantastic during the many months before diagnosis, and was frustrated as I was that we didn’t get answers until he referred me to a 2nd hospital.
Your family have really been through the mill. How are your sister and husband now? Did you feel that it was easier or harder to support each other after your diagnosis?
I bet it felt great messing up your employer’s plans in such a good way
It was 25 years ago, but I think like @Erica I just blurted it out to my wife - and, to my shame, over the phone. (Hint: give news like this in person.)
Other people I handled more thoughtfully:
- my children when they were old enough to understand (I was unusually young for someone getting a CLL diagnosis; I think Johns Hopkins puts the mean age for diagnosis at 71; I was just coming up to 44);
- my employer fairly soon after diagnosis, when a new project started up and people were making plans. I didn’t expect to be unavailable at short notice, but I thought people should know;
- friends as and when (it’s no big secret, but there are still people who don’t know.)