I was diagnosed with Hair Cell Leukaemia in November 2019 and started treatment in January 2020. There has been a lot of conflict and anger in my family since my father passed away from lung cancer in 2016, but when I was diagnosed I thought I would be supported by my family. I was wrong. My mother hasn’t made contact with me since mid-January and my daughter disowned me in May. My husband and all his family supported me through my recovery and during Covid-19 shielding at home, but I’m sad my own family have walked away. I feel very lonely and abandoned. Has this happened to anybody else?
A warm welcome to the forum @TM1972, I am so sorry to hear that you’re not feeling supported by your family, during what must have been such a hugely difficult and worrying time for you… It’s good to hear that you were supported by your husband and his family, though it’s so understandable that not getting this from your own family left you feeling lonely and abandoned. How have you been coping and how have you been doing throughout these past few months?
I’m glad you’ve joined this forum and I hope it helps you to feel supported, even if it’s just a reminder that you’re not alone.
If there’s anything we can do to support you on our support line, please do give us a call. The number is 0808 2080 888.
Oh I am so sorry this happened to you @TM1972. I’ve never experienced that but can say when my mam was dying with breast cancer, the rest of the family starting fighting like nothing before. I think our worries and fears just spilled over and we took it out on those nearest to us. We ended up arguing about who got to see her etc. Cancer isnt easy for anyone. I am so glad you have your husband and his family. I hope your daughter and mother come onside to help support you - maybe they were just overwhelmed not saying thats an excuse or anything. Try to keep positive and strong and look after yourself x
Hi @TM1972 a great big welcome to community forum, we are a new family for you and here to support you.
It must be so upsetting for you feeling abandoned by your family since your diagnosis, especially during these scary, isolating, shielding Covid times. I have found my emotions have been all over the place this year.
When I read your post I suddenly remembered that when I was diagnosed 16 years ago I rang my sister to tell her and she never contacted me until a year later, which was the usual annual Christmas catch up and then she never asked me how I was. I rang her on her birthday and again she did not ask me how I was. I felt very hurt but now realise that is just how she is.
I have contacted her several times during Covid lockdown to see how she is as she lives on her own. No calls back.
Her behaviour still upsets me as she is my only sibling and our parents died years ago. I feel lucky to receive support and caring here and I can say how it really is to be me, I hope you will be able to as well. Take care, look after yourself and have the odd treat.
Hi Alice, thank you for replying back to me. It’s been incredibly hard not having my mum or my daughter around supporting me. Shielding has been very emotionally challenging too but I can imagine there are a lot of people facing this too. I’d just like to understand why my family are behaving this way. Losing my dad was so difficult for us all, but I feel as if I’ve now lost my mum and daughter too. It’s like I’m grieving for them all.
Thank you Rae. Maybe my diagnosis has just brought back memories of my dad’s passing, and all the emotions too. It still hurts though. I dont think I will ever forgive them for abandoning me when I needed them the most.
Hi @TM1972, it’s me again, actually you and your post has made me think and it is interesting how 16 yrs has faded my experiences and thoughts.
I told my son of my diagnosis on the phone, I regret this as I think I could have done it more sympathetically in person, he was about 30 yrs old and lived locally. I remember he did not contact me back till my birthday in January.
My husband is a very factual person, stuck his head in the sand and does not do emotions, so I now recollect I felt firstly in a lonely bubble and then very sad, angry, lonely, isolated, I thought I was the only person in the world with my diagnosis, plus all the emotions around the shock of my diagnosis for quite a while.
My husband and son still do not think to ask me how I am doing. But I realise that is just how I am so that is another reason why I so value my ‘Forum Family’.
I’m planning on doing a better reply to your post… as I’ve too lost a sister to cancer a few years ago and now I’ve recently been diagnosed… but I’ve decided not to tell my family despite those who’ve I have told saying for my benefit that I should… skim reading your post what appears you’re going through is and was my fear… and I am so sorry that you going through this… I will sit down and write a proper contribution once I’ve thoroughly read your post and the replies of others but felt a quick need to reply to let you know that you are not alone and there are some amazing and awesome people on here that can relate to what you are going through and will bat for you as you find a way through this …
I hope today has been one of your better days…
Thank you for posting… im no admin on here but i do know the importance of being heard and having a voice to be able to say how you are feeling with no judgement but with empathy and understanding.
As mentioned i lost a sister (36) a few years back and from her diagnosis to her passing there was about 8 months. Most of that was her in hospital and then in another city where she was on an unsuccessful trial. Her experience and passing had a huge impact on us as siblings and on both my elderly parents. Now i cant speak for them but for me i can. I was managing a stressful fulltime job as well as being her primary carer at times being with her at hospital and taking her to her appointments and many treatments… what ended up being her latter months i am so glad i ditched work and focused on her and being with her whenever i could. This cultivated in me being with her holding her hand when she took her final breathe. Something that to this day is an experience and moment i dont know whether i wish i had or hadnt… its battle for sure.
Its been several years now, but she is everyday thought of by us all, and i light a candle next to her photo everyday… i was told to stop by several people (religion came into play that i wasnt letting her leave) but after a break i followed by heart i went back to doing it.
Through my experience, i vowed to myself that i dont think i could cope losing anyone close, to the point that i would so much rather go before them, because honestly i have no idea how i have managed to stay alive for as long as i have. (Dont panic i having regular therapy session to support me with his amongst other things)
To a point where i released nothing around me was making me happy i made provisions to sort myself out financially here and as my parents health was fine (touchwood) i would move and work abroad for a year or two, to get a fresh start and get away from all responsibility. Unfortunately covid hit at a point where i was about to apply, then my diagnosis for cancer in late august,
Now after all this you maybe questioning how this all relates to your situation… well here it is.
Going through what we did as a family with my sisters cancer was probably the worst experience and time weve collectively gone through. I remember a time where as by my sister bedside in hospital and she said to me “you have no idea how hard this is…” my response to her was “you have no idea what it is like watching you go through all this!”
I dont have kids, or a partner and nor did she so deciding which position you would rather be in… i dont think there is no right answer.
With my diagnosis i have made the decision not to tell my family. Its been a few months upon my diagnosis to understand and learn about my cancer and by the sounds of it and very luckily though its incurable its certainly at this moment in time, very manageable and no where near as aggressive as my sisters so keeping this with me will be easy… though pretending ive been at work for a about 6 weeks has been a challenge at times.
I have no idea how your daughter and mum went through with your dad and or whether they went through what you did emotionally and physically both during and after. To this day, i dont think ive spoken to my parents ( they have each other and frankly i dont think they would understand i spoke first) and with my other sisters ( they both have husbands and kids so whether they have spoken to their spouses i have no idea for support through this) but having no one ive felt massively alone as i didnt want to burden them with my problems and suffering because on paper they have too… so ive been proactive to seek outside support which has helped.
Going back to you, it sounds quite selfish on your mum and daughters part… are they avoiding you because they cant offer or dont want to offer the sympathy, is it the fact they are avoiding having those emotions And Impact return that they are either moved on from or working through, is that they have no idea how to handle this news and are scared of saying the wrong thing or doing the wrong thing because that is what they will only remember? Are they not knowing that all you want is some recognition and support that you need to keep you going and motivated to fight the fight?
Or are they just plain and simple… a*******s… (excuse my language!)
I dont think anyone can answer those questions and maybe you cant either. You can try and even go as far as asking them but there are consequences that may make things better but maybe worse.
I am lucky and i have some amazing people around me, and me not telling them is me being selfish and protecting them for potentially making a situation worse as i really dont have the energy to be supporting them emotionally when really i need to be focussing on me.
Its a very lonely place… esp with the covid situation and i am glad that you have your husband and his family being supportive as you would expect them to be. Have they gone through someone who has or did have cancer?
I think it maybe useful for you to speak to someone who has experienced cancer as a carer twice, than speaking to someone like us who has been there as a carer and now a sufferer. Its in a way easy for us now to understand and make sense what its like from both sides now and i cant tell yet if that makes us stronger, weaker, more aware or more vulnerable?
One thing i can say is talking or typing really does help, and since my first post in this forum, everything is read with care, love, support and more importantly understanding. Ive not used the support lines yet but im not nervous or anxious to do so… (im just not a phone person!) so please though you may feel alone with this in your mind, or physically you really are not, as we on here are here for you. I often come on here to try and materialise how i am feeling and going through by reading other peoples posts and if i can try and contribute my two pence worth.
I can only imagine the feeling of rejection from those that makes it feel the worse but for all your questions, chances, time and hope that they change and come round to being the people you want them to be and expect them to be, dont neglect the people around you your husband and his family etc) that are there for you In the expense in the hope you hold For your mum and daughter to change in their attitude and behaviour, but more importantly let it distract you from thing that matters most… you!
Put a pin in the things that are stressing you out and look and be thankful for the things that make you smile and feel good,
I am so so sorry that youve been diagnosed with all you have been through and with your family issues that is not helping matters…
Take care and keep us posted when you feel when you can and again know, youve got us now!
Much love x
Thank you @Rammie18 for being so honest with your feelings I am sure you will help others.
Perhaps as you say others all react to situations differently and at 70 yrs old I have just found out my sister has resentments against me since childhood and I never realised, how sad for her, we will never truly realise what another person is thinking. Take care.
Thank you so much for your message. I felt quite emotional afterwards. I doubt I will ever know why my family turned their back on me, but I wouldn’t wish this on anybody. It’s hard enough coming to terms with a cancer diagnosis, starting treatment and then recovery, but is even harder when your family have turned their back on you.
My dad was diagnosed with terminal lung cancer on 4th May 2016. We were told he had 12 weeks to live. He passed away on 24th May 2016 - 3 weeks later. His final days were at home with all his family around him. I never left his side and held his hand right till the end.
Grief hit my family differently. My mum still grieves every day for him - they were married for 46 years. My brother doesn’t really share his feelings or emotions. My daughter took it badly as he was in her eyes a father to her (I was a single parent). She has never properly spoken or shared her feelings to me or anyone else. She carries a lot of anger and this anger over the years has been aimed at me. She has insulted me and abused me verbally for many years. She dislikes my husband, even though they once had a great step-father relationship. As an only child I know I have spoilt her, and the way she acts is my own fault, but I never realised how cruel she could be.
We weren’t speaking when I was diagnosed with Hairy Cell Leukaemia back in November 2019, but I wanted her to hear it from me than from someone else. I explained my blood cancer to her and my treatment. She cried, hugged me and said “I love you mum, I don’t want you to die”. From that day we talked every day. She would text me and phone me for updates. When I started my treatment in January, she supported me and when I developed Neutropenia Sepsis just after my chemotherapy, she visited me at Christie’s hospital. It was hard to forgive her for her behaviour in the past but I wanted to draw a line in the sand and move forward. Rebuilding the trust was harder, but we would work on that together as a family. In May this year during my shielding, the past resurfaced again and her jealousy and resentment towards me reappeared. She cut off all communication and I haven’t seen her or my grandchildren since then.
My relationship with my mum I thought was good, however in the past there have been conflicts. After my fathers death, my brother and I both felt she didn’t have time for us. She never rang us or visited with us. It could be weeks before we saw her. When we raised the issue, she would just say ‘I’ve been busy’. She took my diagnosis better than I thought she would. Obviously she was upset but I told her over an over it was treatable, but not curable. I left her a booklet to read through after explaining my type of blood cancer and what treatment I would have. We spent Christmas together, but New Year she wanted to spend alone. My treatment started on Monday 6th January. She rang me on the Tuesday and then I didn’t see her until the Sunday afternoon. I was unwell (little did I know I had sepsis and would be hospitalised the next day). She didn’t ask about my treatment or how I’d gone on. After being admitted to hospital the next day (her birthday), my husband, my daughter, my brother and myself tried to reach her but she wasn’t home. We continued to call her up until 10pm that evening. She knew she was probably at bingo, as that’s her second home. She doesn’t answer her mobile phone and switches her answer machine off at home. The following day she was at work and we think she went straight to bingo after work. Again we all tried to contact her but no luck. On the Wednesday, in the middle of my blood transfusion, my husband rang me to tell me my mum had stormed into our home and verbally abused him for not telling her about me! He was very upset and tried to explain to her we had all been trying to reach her. She dismissed that and said some nasty things to him and stormed out. Since that day, I haven’t heard from her. I was in hospital for 6 days and at no time did she call me or reach out and apologise to me or my husband.
As you can see, my family is torn apart. If my dad was still alive none of this would have happened. I thought my diagnosis would help heal the rift between us all, but it hasn’t. I’ve had to face this without the most important people in my life…my mum, my daughter and my grandchildren. It saddens me that they can’t see the hurt they have caused me.
My husband has been my rock through this journey and without him I don’t know where I would be. I love him very much.
I hope I haven’t babbled on and bored you, but sometimes you just need to get things off your chest and share. There may be others like me who are experiencing the same thing. I will remain strong and positive as I know the people in my life now, love me and support me.
Hi @TM1972, you certainly have not babbled on, this forum is here as a safe place to be able to share how it really is for us. You have really helped me understand my experiences. Also I think grief and also supporting each other is a very individual thing and sometimes, so sadly it does not help family relationships.
You and your husband sound such a supportive unit and loving and as you say he is your rock, that is very special.
Perhaps concentrate on your health and as you say remain strong and positive. Although we are also here for the times when you do not feel strong and positive and if you would like to talk to someone you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at email@example.com.
Take lots of care of yourself.
Families can be A funny thing. When you expect them to rally support they don’t. I have a blood cancer which although can’t be cured is controlled through medication and chemo. I retired early 2 yrs ago from work and also look after my elderly mum age 86 …we manage . I don’t have family but mum has sisters and have cousins. Since lockdown I’ve not heard anything from anyone at all. No phone calls …nothing which makes me sad …angry …lots of emotions. Luckily I’ve got good friends and neighbours who have been helpful. It is likely we will have to shield again which will be hard. Worry about my mental health as have had depression in the past.
I hope you manage to sort things out.
Into local Lock down in the north …I’m dreading it.
Yes, @Hmc63, good friends and neighbours are priceless, but I still often feel it is this forum where I can really say what it is like to me me and that others will understand.
If we do have to shield we will be here to support each other through it.
Hi @TM1972 it sounds awful the way that you’re family have treated you when you need them most. I hope you have got other people around you for support and you’ve certainly got everybody on this forum. I think things went the opposite way for me. I wasn’t particularly close to my family before my diagnosis but since then I get regular phone calls whereas I doubt it I got more than one call from any of them a year beforehand including my mom. My mom died during my chemo period and I think all of the experiences we’ve had since have made us a bit more family orientated and we often talk about the past a lot now. In some ways I find all of the phonecalls a bit too much as I wasn’t used to them but I know they are well meant.
@Rammie18 I completely understand where you are coming from. I lost my brother to pancreatic cancer 5 years ago and even though I wasn’t close to him, I still consider it the worst thing that has ever happened to me not my own cancer. Watching someone who was always the strongest and most confident of us turn into a crumpled mess unable to do anything for himself in the space of a few weeks was horrific. At the time I started sleeping with the curtains open as I hated the dark. I am also more upset by my sister’s recent diagnosis than I am about my own.
It is of little consolation but we are all here for you and each other, I know it isn’t much but it is another avenue, problem shared and halved etc…
Hi @Franko, it must have been really tough loosing your mom whilst you were having chemo and then to loose your brother as well 5 yrs ago. It is interesting what you say, although you were not that close to him, I think perhaps I have been hit more by people of my own age group dying but I am also finding sometimes the closeness of a relationship does not matter it is just something that really knocks me for six, probably subconscious. Then I feel guilty for not feeling the loss of the closer relationship more or not being there or contacting them more, the list goes on and on.
It is also easier for me to feel more about another’s diagnosis than my own, something around not wanting to show weakness, that’s a growing up thing about not showing emotions.
My emotions have also been all over the place since Covid, something as you say about not having a plan, being out of control of. I think with the original lockdown I felt it was till the end of June, then we go back to normal life, how wrong was I.
Hi @Billy1mate, welcome to our forum and what wise words. You really show the benefit of the forum so well. As well as us you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at firstname.lastname@example.org for a chat.
I often feel that people on this forum really understand and don’t judge me as sometimes family and friends cannot.
I look forward to hearing more from you and I am struck by your forum name. Take care.
I understand how you feel, i have no support from my family at all.
Hi @Ruthiebabe1, if you don’t mind please tell us a bit more about your situation and do you have other support, we are a family on this forum so you always have us for support.