Depression

Hi Jaffacake,

Thank you for your post, it must have taken a lot of courage to write it.

I am a little further ahead than you being over 4 years post SCT, but I can acknowledge how difficult you must be finding the shielding guidance, because I have found it difficult and I am further away in time from the traumatic experiences. I am struggling with the hard-fought independence being taken away from me, I’m not sure if it’s the same for you?

I wonder if you’ve explored counseling or psychological support. I had an emotional breakdown about two months after SCT and was under the care of a psychologist for about a year. He really helped me to see things in a different way, it’s not a silver bullet and it won’t make things “better” but it did allow me some time and space to let out and process my emotions. They are able to arrange telephone conversations - it might be worth mentioning it to your medical team? I was told 90% of SCT patients can expect to suffer from some form of PTSD so they would be expecting to provide you with some sort of support in this area.

To get me through this period, I am going back to my old techniques of one day at a time, keeping myself distracted, not looking at the news. I’m finding it hard to go back after 4 years, so you’ll be finding it even harder with the experience being closer, so don’t be too hard on yourself. This is a tough time and we have to do whatever we can to get through it.

Greg

Hi. Thanks for replying.

I have had counselling and after seeing my haematologist last month, it was suggested that I go back. Now of course, I am unable to because of the Coronavirus but I should be getting a phone call. I don't find it easy talking on the phone due to right side facial palsy due to CNS, but I'll see how it goes!

I'm trying to find things to do, but I end up crying and thinking too much. I'll try and be kinder to myself.

Of course I understand why I can't go out. I'm on my own and miss everyone so much. Let's hope we all get through it sooner rather than later.

Thanks again

Jane

Hi Jane  - perfect place to put this up as folks who are on or have been on the SCT journey can understand the challenges you are facing.

I am 4 1/2 years post my 2nd Allo SCT and I was very fortunate in coming through both my SCTs with very few physiological challenges but as Greg has said, talking with a counsellor does help.

I unknowingly had collected a lot of ‘stuff’ in my invisible rucksack during and after my treatment especially survivors guilt due two very good friends not getting through their cancer and me surviving.

But a few sessions with one of our local Maggie’s Centre counsellors helped a lot.

I had a call from our Maggie’s at the start of the week checking how I was doing and arranging our monthly Heamatology Support Group to be done through a group video conference next week, so looking forward to talk with the group especially a few folks how are just a few months post SCT.

She did say that they were now offering one on one counsellor support sessions on Video Conference so it would be worth checking out the link above.

We are also basically in lockdown but as with Greg having difficulty getting prescriptions but we will keep pushing the doors. We have  managed to get a few Tesco Deliveries set up and found one free at 12.30 am this morning for three weeks time.

Challenging times but I must say that the more folks I talk with who have been through SCT are better positioned to deal with the isolation - more than folks with other types of cancer journeys and more so having treatment cancelled - that is such a hard situation to deal with.

As Greg often says - this is temporary.

((hugs))

Hi Jane ,

it’s such a tough time after all you’ve been through, and really so recent to lose what independence you’ve fought so hard to get, sending you helping thoughts....

as Greg and Mike have said but I know you’ll find it hard due to the problems you have talking, telephoned counselling would most likely help you a lot, if this is possible to arrange.

Daughter had a lot of counselling after her more recent allo SCT (but way back in 2011) as she even suffered a lot with survivors guilt. She didn’t confide in any of us thinking we would be so worried, till she was through the worst. She even composed some piano tracks to help her sort her mind out (she’s a freelance musician) 

big hugs xxx

Thank you. My cancer centre is the Helen Rollason centre. I last saw the counsellor just before Christmas. As I said previously my haematologist suggested I go back. Deep down, I think I knew I should return, but was scared in case they said no! My appointment is set up for 7th April. I'm also waiting for a doctor to call to discuss my antidepressants...not sleeping, crying all the time through worrying. I'm hoping she can help.

Take care

Jane

Hi,

Am set up for more counselling on 7th April. It was suggested that I write in a journal each day, about feelings, what I have been doing etc...also trying to do things, like puzzles etc, but as my sight is damaged, I find this hard.

Thank you for replying.

Jane

A journal is a great tool as you can unpack your feelings, positive and negative thoughts, achievements, challenges......

For some reason unbeknown to me I started one over 20 years back when I was first diagnosed....... now contained in a number of small jotters and now moved onto my phone.

 From time to time when I am having a potty me party as my wife calls it she hands the jitters to me and tells me to read....... them I see the progress made over the years and recognise the same issues and how I frailty with them.

The 7th is just Tuesday so look at this as an opportunity to lay down some new foundations down for you to start building on.

Take a moment every day between now and then to put some positives and negatives down on paper.

((hugs)) from a distance.

If writing is difficult, think about jotting subject headers down which will encourage you to open up about what they mean to you, and then perhaps you can expand on them. 

But I agree, I started a journal a few years ago and it’s been really helpful, sometimes I write only once a week but summarise what has happened during the week, so it’s not like a diary but more about what happens and how you dealt with it.

And yes, sometimes antidepressants do need reviewing in light of how you are, but remember if drugs like this are changed it can take a couple of weeks to begin to feel the benefit. 

Hugs xxx

Hi Jane - I’m sorry you are going through a hard time mentally and physically. Pain sucks.

I’m not much of a poster but I do find this forum a positive place for me, there are folks on here like Greg, Moony and Mike that have been through what we have and their positive attitude and community spirit has helped me mentally.

I think most of us have mentally crashed at some point and I’m sure we will again. Counselling was a help for me but I still have very dark days. I hope you feel some light. 

Would any of your meds be adding to your depression? And some anti-D’s may help with your pain.

During my second round of chemo, everything that could have gone wrong did. One of the many things that saved my life was having a colostomy. I was due to have my front bum reversed last week, the reversal I have always seen as an end to my journey. The op was obviously cancelled. Our lives have been put on hold but they will start again and I will have my op.

Stay safe

Jake