It’s ‘Time to Talk day’ on 2 February, but perhaps it should be every day, and all about making space in our day to talk about mental health and creating supportive communities by having conversations with family, friends or colleagues.
I was brought up not to say how I was feeling to anyone. So what did I do, yes, marry a man that is the same. My husband does not do small talk or emotions.
Since my diagnosis I have lost some friends and gained others and I think the friends I have gained are ones I can really say how it is and feels to be me.
This has been so liberating and I feel so much better for it.
I find it is interesting because in turn my friends also tend to open up to me and our friendships are so much deeper now.
For me it is certainly not about trying to fix each other, it is just being that listening ear.
This forum has also been a wonderful space and I can definitely say how it is and feels to be me on here, thank you all.
Perhaps we can use this space to say how we are really feeling
Thank you for this space for a ‘time to talk’. I don’t say much on here but its a wonderful space to have access to. Today, I’m feeling overwhelmed, tired beyond words, sad, under pressure, missing my hubby and son and, truly, wishing for a different life with the same people. I’m currently in Ireland looking after my dad and wishing him easier days with a better quality of life. For him, my mum and all of us. So, as always, I’ll lift my head from this safe space, smile and ask "what can i do? ". Even if it’s with gritted teeth, its still with love. @Erica , i appreciate YOU and your calmness, kindness and understanding. And everyone else on here who ‘gets it’. Onwards and upwards
Oh, @judesadventures sorry to hear you are back in Ireland and as you say you wish for a different life with the same people.
I know that putting on my smiley mask and putting my needs at the bottom of the pile so well, but for me it comes out in health problems.
Thank you for showing so clearly the conflicting thoughts and feelings you can have at the same time and I know with you they are always with love.
Sending you loads of love and we are always here for you xxxx
Thank for sharing @judesadventures. Days like this can be so exhausting can’t they but having this space to say how it really is for us makes such a difference.
I hope tomorrow is a little better. Either way we are all here for you.
Sending lots of love
Nichola x
Hi @Erica. Thank you so much for starting this thread.
You say it so well and support so many people, both by sharing your experiences and understanding others.
This really is a space where we can say how we really feel with no judgement. So tomorrow, we will all be there to support each other if we need time to talk X
A week on from my six monthly check up and I’m still feeling a bit fragile. Have I shared this with anybody - no, because I don’t think they really get it. That may be a huge assumption on my part and I could be completely wrong. Perhaps it’s just easier to get on with it than talking and letting it all out. I think probably the latter!
I’m slowly getting there and I’m just trying to give myself a break. After each check up - as well as being happy that everything is ok - I go right back to the beginning and feel like I’m starting all over again.
It will pass and I will start to feel better. Feeling grateful that I can say how it really is on here X
Sending a hug, keep taking care of yourself as it’s easy to miss out your own needs while you’re carrying responsibility for someone else.
Hi @Carrie a great big welcome and I look forward to hearing all about you and what your needs are?
We are here for you and if you would like to talk the Blood Cancer UK support line is there on 0808 2080 888
Sending a hug back
Thank you so much @Erica for introducing this topic. It is so important. As you say, everyday should be a ‘Time to Talk’ day. I identify with so much of your story. I was brought up not to show my emotions or make a fuss. My mother’s favourite phrase was “it doesn’t matter” and unfortunately I have a vivid memory of bursting into tears in a public place at four years old. I was asked to present a bouquet of flowers to the Prime Minister’s wife with no warning and being a very shy child, it was all too much! It has taken me years to overcome this traumatic incident as my father in particular was very cross with me for crying in public and for showing him up by not doing what was asked. Having to keep the lid on everything is so damaging but now I am learning that tears are okay and can bring healing. Thanks for providing a safe place to share my story. You are such an incredible support, Erica! Warm wishes to everyone on this Time to Talk day. Willow X
Hi, a great big thanks to all.
@Willow when I was very little when the family cat died and I can remember my father was pleased with me because I did not cry and my mother and sister did.
My husband and I had this non Covid flu, cold, cough etc. after Christmas and it took it’s natural course with him, but I found it a lot harder to shake it off and the fatigue really got me and lingered. He could not understand this as he only sees things from his perspective.
As soon as I get low my shingles (not contagious) comes back again with vengeance and my reoccurring skin cancer scar really hurts.
Just before Christmas my husbands sister died and I know like @judesadventures I keep going and keep going till it really hits me with a sledgehammer and that with my lingering fatigue was not a good mixture.
The funeral was only last Tuesday and it was a very long day. An early start, terrible traffic etc. and as I also have curvature of the spine and osteoporosis my back pain was quite bad when we got there.
The day was peppered by getting in and out of cars with me sitting in the middle in the back and trying to get my feet somewhere and struggling to get our seat belt on.
I lived the day on my nerves as I wanted the day to go as well as a funeral can.
We ate unhealthily and I did not drink enough water.
We did not know anyone apart from the family, and I had a glow of pride at our 49yr old son as he went around talking to and getting drinks orders for the guests, mind you as he was wearing a white shirt, black tie and black waistcoat the guests probably thought he was a waiter!!!
By the time we got home the fatigue really engulfed me and I got into bed and lay on my back for the pain to subside and my limbs felt just too heavy to move or lift and I just slept and slept, although I did wake up when my husband brought my hot chocolate, he really does make a good one.
My bladder and bowel think what’s happening and close down and I feel really bloated.
It takes me all my umph to go for my daily walk, which does make me feel better, but I have no energy and I am walking slower.
I still have to really motivate to do anything and feel really fatigued, I feel tearful, but not tears of grief, tears of fatigue, but like @judesadventures my default smiley mask goes on.
Thanks for starting up this topic @Erica. Although I find it easy to share with my husband how I’m feeling, and I share updates on my physical health with friends when they ask, I’d never felt able to share how I was feeling mentally. However I decided to do so with a couple of friends in the past week.
I really lived in fear of relapsing last year , had some poor blood marker results , kidney biopsy and my Haemo consultant moved my checkups back to shorter gaps (a sign to me that he was worried - didn’t help that my renal consultant told me my Haemo consultant “had a touch of the willies about my bloods”!) . So mentally last year was very tough , felt it hard to plan ahead etc. Anyway was in a much better place in November, bloods looked stable , consultant pushed my check ups out a bit more and I finally felt able to relax a bit and let the fear go.
But also , as I said, was brave and shared with a few friends how I’d been feeling mentally last year. Had my latest check up today (all good, nice and stable still) and also told my consultant the difference between my mental state last year and now , and I realised I’d never discussed it with him until now either (also I think many consultants focus on the physical not the mental aspects when they ask how we’re feeling Ie any lumps, bumps, night sweats , weight loss etc) . It has been a great reminder that the old saying of “a problem shared is a problem halved”. It’s felt really good to open up about my mental health and talk about it so I plan to do a bit more of that this coming year. Be kind to yourself everyone , talking comes easier to some rather than others, important to do it at your own pace.
Erica
I do admire your capacity to listen to us all and find words of comfort and consolation, when you yourself are struggling just as much as we are. It is so depressing when your body seems to turn on you and torture you with different pains and aches. God knows I find it difficult to motivate myself to do anything physical as I do not have any energy . I can just about cope with washing and dressing but anything more is beyond me and I am just too weary to care. I am 80 this year and I can’t decid if this is old age or due to,Polycythaemia vera (PV) and all the pils I have to swallow. Cancers are both a physical and mental battle. Sadly only someone going through this can truly understand the need to regain some control. Try to keep some time or yourself. Marylin
Hello @Erica. So sorry to hear both you and your husband have been unwell and are continuing to suffer the effects. I hope you are recovering a bit now from the challenging day of the funeral last Tuesday. Fatigue is so hard to handle and I agree it affects me emotionally as well as physically. As others have said, treat yourself kindly. Warm wishes. Willow X
Hi @CaroleCW. How did your friends respond? Were you glad you opened up, even though it was really difficult? X
It sounds like it was a really tough week that really took its toll. I hope you took good care of yourself and start to feel a little better each day. It really does take it out of you x
Yes they were both lovely and supportive. Felt good to open up to them.
Erica makes such an important point about time to talk and the fact there are some we can’t talk to and others we can! I tend to avoid saying too much to my nearest and dearest as I think they can forget it in between times where there might be a crisis. One of my recent surprises was a TIA (mini stroke) in the midst of a time it was hard to get to medical support. The trouble was I wasn’t sure it was that serious. Anyway, I then realised that I’d always assumed my cancer would finish me off somehow and it was a bit of a shock to start thinking about other hurdles that might arise. Once past the GP/NHS 111 the 2 hospitals were excellent. Lots who went above and beyond which I found very humbling when things were so difficult for them. Sometimes we don’t even comprehend the assumptions we make.
Hi Erica , I’ve been on my rollercoaster ride lately, once it gets going hard to stop it or slow it down, I met what I thought was a new friend, but turns out she was only using me to get a lift to our classes, I dropped by Thursday before Christmas with a pressie, last time I heard from her, she didn’t even come to Andrew’s 30th birthday party… I’ve had worries of relapse also, new niggles, feeling tired, hot sweats , so I booked myself into the GP to have a talk with him , he’s writing to my consultant see if I can get bloods and a scan done, I’ve been told that thought is always with us and never goes away, they say times a great healer, with times does it get less, Next weeks my birthday so I’m going to see if the boys want to stay at home for a couple of days, keep me company and cheer me up, my car went into the honda Garage , rip off , a dpf clean and the tried to con me into thinking there was 6 things wrong with my car , it just got MOT’d 2 mths ago , asking for 1 part £2500.00 , my cars always been mot/serviced at Honda , although this is a different Honda garage , ARNOLD CLARK , Cars are great when their running, getting Andrew this Friday he wants to stay the weekend, forgot Im getting a massage so he’ll just have to sit upstairs watching TV while I’m getting all relaxed, Indian head massage and reflexology it’s amazing, hope you and everyone is keeping well Xxx
Oh Jay you certainly have a lot on your plate, we certainly find out who our friends are.
I hope you get your consultants appointment soon to check you out.
As for your car ours is also going in for a service and MOT on the 22nd, it’s like going to a parents evening, but rather more expensive.
Your Indian head massage and reflexology sounds amazing, just what the doctor ordered and definitely what you deserve.
Please keep us posted and be very kind to yourself
Have an absolutely wonderful birthday and I hope you see your boys around that time, the icing on the cake.