Looking for support
Long post alert.
I have thought long and hard about joining and posting on the forum. I desperately need and want some support but feel like what I am about to describe is less…… worthy of it.
So much of what I have read lately has come from the hearts’ of parents, spouses and partners of many years. People facing the trials of supporting a much loved family member through what, I am learning, is the most brutal of journies. And I am just going to write all about me - and I don't have the illness - my partner does.
My story is different and I am struggling to find anyone who seems able to understand what's happening to me/us.
So, last August I met a man :). I hadn’t been in a long term relationship since 2017. He is great and as you read on please please please do not doubt for a moment how much I have grown to love him. He lost his wife two years ago to bowel cancer. We were taking things slowly but seriously. I was spending almost every other weekend at his place (his work means I have to travel to him - which is about three and a half hours from home).
I knew he had AML five years before we met and was due his five year check up in October last year. All great, blood tests came back clear and he went on holiday for three weeks. Nine days after he returned, I went on holiday for a fortnight. We missed each other A LOT and realised how deep our feelings for one another were.
We had a wonderful weekend together once I was back, early January this year, and then the news came. The detailed blood tests showed his AML was back - confirmed by further tests.
So, two rounds of chemo, each about a month as an inpatient, a few weeks at his place inbetween (me travelling to him every weekend as well as during the week to see him in the hospital during the evenings - a serious amount of travel). Then into isolation for five to six weeks (I still had to work but did nothing socially at all and went down to stay with him from Friday afternoon until early Monday morning) and now back in hospital for SCT (day 0 last Wednesday).
He is so poorly at the moment and I know how much I love him because of how much it hurts in my chest and throat and stomach to see him like this.
But my goodness, there are so many difficulties.
I am spending around twenty-five to thirty hours a week - on top of a very demanding full time job and long commutes - to be with him, do his laundry, go down to see his dog who was poorly and wouldn’t eat, help with jobs and admin etc etc. I am the first contact/next of kin for the hospital. His father in law had a heart attack on Monday and it was me the call from his pendant alarm came to….. I feel like I have walked into the role of long term partner/domestic partner or whatever without having got anywhere close to that point. In fact, we'd both been very clear we weren't looking for that any time in the near future - if at all.
Due to the time spent with him and the need to isolate from as many people as possible I have not seen friends in months and months. My life hasn’t so much been turned upside down as it has been eclipsed. I have an elderly dog who I keep leaving with a friend so I can be with my partner, stay with him, comfort and care for him. There is so so much I have and do miss.
My friends really don’t understand. I had only actually been seeing my partner for a few months, bearing in mind time spent apart with holidays, before this happened - in fact we did not describe one another as ‘partner 'until this happened and we needed to put me down as something on the contacts list. My friends have never met him, not one of them. I have met some of his because we have had to be at his place at weekends - again life has had to revolve around his home. But we certainly don’t share any mutual friends who could offer support.
I am not a selfish or resentfu;l person, honestly I am not, but I am starting to feel both. I am finding it so hard not to wish I had my old life back. I was not ready for this and I am not coping with it. It's not like me not to cope.
He says he wants me to talk about how I feel but there are so many ways in which I can’t. He is an amazingly positive person but also places an obligation on me to be the same. He wouldn’t discuss, for instance, how bad the side effects of SCT might be. Now they are here he can’t talk about them because he can't talk,’ We never discussed how we would handle them, I don’t know him well enough if he means it when he says don’t come in or is he saying it because I was upset the last time I saw him and he needs me to be unrelentingly positive….. I just don’t know what to do.
I hate seeing him suffering as he is in hospital but am worried sick about him when I don't see him. There is not a waking moment when he isn’t on my mind. This wouldn't be so bad if I at least slept more than I am.
We have never discussed the worst case scenario. He is 100% sure this will work. I am, if honest, about 65 - 70% sure….
I understand why he needs to be this way and he often talks about how he and his wife always had this super strong and amazing attitude towards their illnesses, about how inspired and impressed everyone was with their strength and courage - I can’t argue or compete with that. I feel like I am failing us all.
He has, totally understandably again, become a lot less considerate since the relapse too. Several times since January he has run roughshod over my feelings - made decisions which prioritise others (including people
he doesn't know that well) but without much reason. He has each time, in fairness, apologised and explained that he just didn't think. But, in my head I'm saying, ‘but I never stop thinking about you, and how I can help you’.
I don’t know if he has just started to take me a bit for granted, that I orbit around him as a given, because, as he pointed out just last week, our relationship has been longer with AML as an uninvited guest than without.
I have no idea what happens when this is done. We never discussed the possibility of a long term relationship, or living together or anything even close to that - we just admitted we were getting feelings. Will we just go back to visit every other weekend or so?
I am not sleeping much at all, started to sleepwalk and childhood eczema has returned. I am struggling to eat and cry loads. I know it is stress, and a lot of that comes from feeling so isolated - as I said we don’t have a mutual support network and my friends really don’t get it, some honestly make it clear they don’t think i should be getting in this deep. I have no close family, lost my Mum in horrendous circumstances about eighteen months ago.
Meanwhile, he is getting amazing support, not just from me, but also his friends at home and, of course, the incredible staff - they blow my mind with their skill, care and compassion.
As I write this, I know he is feeling just dreadful, and I wonder if I can actually post it - so self indulgent and self-pitying. I don't know where else I can say all this though.
I am sorry - really I am.
Comments
Hi Jasabu.
Thank you for posting, as you say yourself, you struggled to post this. I won't say I understand your position but I think you have very important step here.
Just to introduce myself, I am Liam and I'm the Patients and Families Manager at Anthony Nolan. I wanted to reach out to you to say, we're here for you as a loved one as much as we are here for patients too.
We have a lot of support we can offer, but I think our telephone emotional support service might be beneficial to you right now. If I could ask you to call 0303 303 0303 and select option 3 or email patientinfo@anthonynolan.org we can discuss the service further.
We have a training session this afternoon but will be back on Monday.
I the meantime, if you feel you need to talk to someone the samaritan are available on 116 123.
All the best
Liam
Hello Jasabu.
I read your post several days ago and my heart went out to you. I'm hoping you are finding some peace.
I come from a place of a little understanding as I have a friend with cancer and under treatment. A mixture of exhaustion and exasperation and fear. She is the bravest person I know.
However 2 years ago I also had a SCT. I also feel for your partner because I know how sick he feels.
The worst thing for me following the transplant was feeling dependent. I felt guilty that my friends were running round after me because of my weakness and vulnerability.
It sounds to me that your partner is getting good support also from his friends and perhaps one problem is that you don't know them well enough to ask for the exact support you need. Maybe your partner could help with this, depending how he is? What I found I needed help with in particular was transport to appointments as I wasn't well enough to drive 90 mins each way. I don't know if it would work for your situation, but I set up a FB group of everyone who had offered help. These people didn't know each other. But I would post when I needed something and one or other would offer a lift or a meal or whatever. It worked for us.
There are physical and emotional challenges after transplant and some are unexpected. I know I have put my friends through an emotional rollercoaster and I feel guilty about that. I know it's irrational. I didn't expect it. I'm saying this because I understand that you are experiencing unexpected emotions. Anthony Nolan has really good counselling services. And they're especially good because they know exactly what's involved with SCT from everyone's point of view. You won't have to keep explaining that.
Just thought I'd send you this little message in case it can be of any help.