Post auto stem cell transplant blues

Hi Jennifer, it is so good to hear from you and that Jacqueline’s PET is clear.

Does the waiting, anxiety and stress improve?......yes it will but it just does take time. 

The further you get away from that SCT date the better things get. I like to see it as driving a car, the future is visible through the big wide windscreen and if you want to see the past it is only available in the little wing mirrors and continues to disappear and get fuzzy at the edges - so you need to keep look at the future. Jacqueline is in a far better place now than she was in the past and looks like making progress building a new life but it is all about baby steps.

I often post this great paper to folks who have come through treatment Dr Peter Harvey - Life after Treatment but it would be worth you having a look through it as you will get to understand of some of the post treatment challenges and I think you may be able to identify with some of the points.

((hugs)) xx

Hi Jennifer,

I think it is quite normal to feel down in the aftermath of a major procedure like an SCT. My thinking is that in treatment you have so much to focus on, so much to plough through, so much to endure, that it is only when active treatment stops that you have time to process all that has happened to you.

I do think distraction is good when applied appropriately. Could your daughter perhaps start a hobby, or something else to occupy her mind during this phase? That might help her mental health at this time.

Re: will things get better? I think it depends what you are looking for / expecting. For sure, as time passes, the intensity of feeling diminishes as negative experiences are crowded out by new positive ones. The emotions in the future will likely not be as raw as they are now. But in my experience, it is a bit like a pandora’s box, once it is opened it doesn’t fully close again. It’s a bit like you can’t unsee something once you have seen it. I longed for ages to be “better”, back to the way i used to be. It took me a long time to work out I wasn’t going to be able to wind back the clock. But you can learn to deal with the new situation in more effective ways. And in some ways, reach a kind of peace that the difficult experiences have been an important part of your life, part of what makes your life yours, and that life can still be celebrated even if it is not quite how it was planned or expected. Because what we believed to be certain, was never really certain in the first place.

I really hope this helps.

Greg

Hi Jennifer,

really glad Jacqueline is still clear, (and scanxiety is a known complication in parents!!) but I do understand how she feels depressed when, by all accounts, she should be celebrating. It’s surely some part PTSD and some part Survivors guilt? 

Daughter was the same, I guess it happens to sensitive musical folk? Jacqueline maybe needs some counselling help to work things through, that helped daughter immensely. Maybe you, too? As yes, you’ve been through it all with her, supporting her all the way through. 

Sending understanding hugs xxx

I think the anxiety is more in response to having cancer than the actual SCT. As Mike has said on numerous occasions one of the hardest battles is between the ears. I really struggled during the early days of my treatment but I am honestly at ease with where I am at the moment even though things have still not gone to plan. 

A friends mother was diagnosed with cancer shortly after me and she had an operation, chemo and is now cancer free but she can’t move on and is suffering mentally because of it. She often contacts me as she says I understand her and because I’m still on my journey I think she even feels guilty. I keep trying to tell her she needs to focus more on the future and less on the past and until she can do that, she will always struggle. 

I now only focus on the future but certainly not too far into it and try to make the most of what I have now by being a good and loving father and husband.

What has happened in the past is in the past, I can’t forget it but I know it has made me a more compassionate person who takes more time to try to understand whilst helping others and for me, amongst all the chaos of the past 19 months, that can’t be a bad thing. 

Good luck.

Mark x

I agree with Greg and  Moomy. While I was housebound I found escaping into my hobbies was a great help. I used email to contact lots of friends I hadn't been in touch with for ages. I got 'better in bits'. As I was able to get back to certain activities, there was a step forward in my mental state. Being able to drive a bit more and do my own shopping made me feel much more independent. Getting back to my one day a week volunteer job meant I saw my old friends, travelled on the train like a normal person (great for people watching).  A big leap forward came when I was allowed to get back to my garden. This will sound mad, but the last few weeks I have felt joy at being able to clear out my spare room and shed (wearing face mask in case of dust and spores). Having spent so long in a isolated hospital room, I realised I didn't need all that 'stuff'.

I also noticed that I didn't miss some of the things I used to do routinely. So I have trimmed my diary and some of my friends! 

A good friend of mine has turned down an operation on a tumour because it is going to take three months to recover. She is thinking Three Whole Months - That is Unbearable. I am thinking Only three months - aren't you lucky. I couldn't tell her she was wrong, I could only tell her my experience. She didn't argue, maybe she will think about it. 

I've always been a worrier, but I think it helps to identify exactly what the issues are. Things could go round in my head for hours, but if I wrote it down it only looked like one paragraph of problems. I was just repeating it over in my head until I was exhausted. Seeing that one paragraph made it look smaller and more manageable.

Tessa

Thanks everyone for all the advise.  I don’t know why I don’t get emails stating I had replies anymore.  So it takes me awhile  to check on it.  Jacqueline did get engaged and is extremely happy.  They got a puppy and trying to live life just on a day to day basis.  Scary not knowing anything.  Doctor mentioned pet scan in November would mark two years and if all is well she will get her port out.  Oh every time he mentions pet scan my heart drops.  It’s been three years since her diagnosis and we really been through so much.  When I look at pictures I find myself sobbing as if I wasn’t there and I’m just looking back in the picture and can’t believe what we have overcome   And in a way we still battle with the what if’s.   I’m scared of our future.  I have dreams of these dumb pets scans.  When I see my daughter I always look at her neck area for lumps.  Am I crazy ? 

Hi, 

No you’re not crazy and anxiety is common learning to try and deal with it is what some people struggle with. Cancer for me has been two battles, one physically and the other mentally and this part of often over looked. 

Im sure your daughter is fully aware of what is going on in her body and will almost certainly check herself so should know when something is not right. A friend of mine had breast cancer 4 years ago and we were both speaking  about checking ourselves and how we don’t really want to do it but know it’s a sensible thing to do so do it. 

We both spoke about moving on and she no longer plans years ahead and is living more for the here and now with her husband and kids. She said they don’t save like they used to and buy nice things when they want and take more short breaks away etc. She said she can’t changed what’s happened although it’s changed her but she can change her future so just focuses on that. 

I’m unfortunately still on my journey but if I can get to a two year clear scan, I can honestly say with my hand on my heart I will not be looking back. I will take it as a second chance and live my life with my wife and children to the full and only worry further down the line if there becomes something to worry. I certainly won’t forget what’s happened to me the past 2 years I will just put it down to a chapter of my life I unfortunately had to do through. 

Good luck. 

Regards 

Mark x

Hi Jennifer, and first a big ((hug))........this is a long post ;)

Email notifications:

Have a look on the page for the ‘Email notifications from this group’ and see what it is set on.

Another simple way of finding your old posts is to hit your ‘Avatar’ picture (top right) and this will take you to your ‘About me’ then look for ‘My recent activity’ where you will find all your old posts.

I think we all totally understand what you are saying about CT/PET and clinic appointments. You are not crazy........ but It does improve, with time it does!...... as confidence and trust in her body grows and the memories start to get fuzzy at the edges.

I am now over 3 years 9 months (not that I am counting) post SCT number 2 and if it was not for coming into this site the whole episode of my life would now be a very vague memory.

In June last year (2 years 9 months post SCT) I was having a Video Conference with my team and after a review if sscans, bloods and a few questions I was told that I was discharged from their care, no more clinics, bloods or CTs.... It was a total shock, even my Specialist Cancer Nurse who was sitting with me was taken by surprise. My safety blanket had been taken away.

But my head SCT Consultant went on to say that they are now finding that once someone gets to two years and everything is looking good it is far better for patients to get on with life and not to have Scanxiety and looking over their shoulder all the time as they are now seeing patients health and well-being improving at a pace.

The Consultants last words where “You know where we are and you have the phone number of your SCN........ but please go live your new life and enjoy it.

Life is like driving a car. The future is visible in the wide open front screen, the past is only visible in the little rear view mirrors and the further you go the harder it is to see the past......but if you concentrate on the past you will crash”......... so that is what I am doing.

This is an interesting arrival I found about Scanxiety - make a coffee and have a look.

Big ((hugs)) again xx

What Is Scanxiety and How Can You Manage It?February 26, 2018 - Choose Hope

The first time you read or hear it, “scanxiety” may look and sound like a funny word. However, when you are going through it, there is nothing funny about this very real condition. From the first MRI following a doctor’s suspicious discovery during a routine exam to the annual PET scan years after an initial diagnosis, the fear and worry that accompanies imaging appointments can take a significant toll on your emotional and mental wellbeing.

Fortunately, you can take steps to minimise and cope with the sometimes-overwhelming emotions you feel.

Acknowledge your Feelings

Don’t try to ignore the way you feel, as this can actually increase your anxiety. Instead, recognise and even embrace your scanxiety. This first step empowers you to take action, move forward and manage your emotions, helping you find peace and feel more in control of your own life.

Talk about It to the Right People

Venting your fears and frustrations to people close to you can be a wonderful way to release stress and gain vital support. However, if you have folks in your life who tend to exacerbate your worries or load you up with even more concerns (and really, who doesn’t have that one friend or family member?), avoid sharing too much with them.

Practice Mindful Living

Ancient Chinese philosopher Lao Tzu said, “If you are depressed you are living in the past. If you are anxious you are living in the future. If you are at peace you are living in the present.” Look for ways to live in the moment. Hug your little boy and inhale deeply, noting the mingled fragrance of fresh earth and shampoo. Stroke your husband’s face and think about the way his soft stubble brushes your hand. Savour a particularly flavourful meal. Relish in the here and now.

Distract Yourself

Find ways to take your mind off the upcoming scan, at least for a while. Dig into a novel or binge watch a series that completely engrosses you. Turn up your favourite music and tackle a chore you’ve been putting off for too long. Hang out with that one friend who has a gift for making you guffaw. Schedule some time to enjoy your favourite hobby without interruption. If you have trouble letting go, imagine setting your worries in a “to do later” box and tell yourself you can pick them up when you’re done.

Ask Questions

Sometimes, the unknown is the greatest instigator of anxiety. If you are unclear about anything –from what to expect during the scan, to when and how you can expect to receive your results, to what those results might mean– don’t be afraid to ask your doctor. Having a well-defined understanding of what you will or might experience allows you to be better prepared and can even ease your mind.

Plan for the Worst Outcome…

Along with knowing what could possibly come of your scan, creating a strategy for the worst case scenario can improve your sense of control. By no means should this be perceived as giving up or being resigning yourself to bad news. Cancer can make you feel powerless, but creating a basic action plan just in case can help  you regain your power as well as your optimism.

…but Visualise the Best

Your mind is more powerful than you might realise. Visualisation and guided imagery have been shown to improve your mood, control symptoms or side effects and even boost your immune system. Imagine yourself receiving great news after your scan. Allow yourself to experience the feelings of relief, gratitude and elation. Think about these things as though you are remembering them. Seeing it in your mind’s eye can give you the encouragement you need to overcome your scanxiety.

Hi Jennifer,

As Mark and Mike have said, you are definitely not crazy, I’m sure most SCT patients and their families would agree that what you are describing is actually very normal.

Some things that have helped me along the way (although I am by no means perfect!!):

1. The future is not ours to own - for a long time I used to think about saving money for a pension, working hard for a promotion, nurturing a loving family, etc - these things might happen but they are by no means guaranteed. I used to think it was the natural way of life so it would happen for me but really, if those things happen they are a gift, not something I am entitled to. It is human nature to dream, and you should definitely dream away, but now I don’t put things off, if there’s something I want to do I do it now, and let the future be what it wants to be.

2. The past is a really important part of us - it defines us culturally, psychologically, in our view of the world. And the same goes for an SCT. My doctor said that at least 90% of SCT patients (and probably their families) will experience some form of PTSD - it was a traumatic experience so it will inevitably be a large part of who you are, and any reminders of it are going to be difficult to process. But I don’t try to erase the difficult memories now, I embrace them for what they are, an important part of my existence and who I am. Also, scanxiety is largely generated by a fear of the past repeating itself. A clever person once helped me to realize that yes, bad things might happen in the future, but the past can never repeat itself, the future will always be different in some way. And if my future experience is going to be different than my past, what am I afraid of? Because how can I be afraid of something if I don’t know what it will be?

3. The present is the best place to stay when these thoughts come along. There is beauty in everything when you stop to look at it. This is an incredibly wonderful, awe-inspiring existence we are experiencing, and there is peace even in a single, deep breath.

Of course, over-analyzing and over-thinking is no good either. Distraction and getting on with stuff is also incredibly useful too. Thoughts and emotions are fleeting - they can be very powerful, but they’re only temporary, and sometimes acknowledging them but then purposefully letting them go is the best you can do. 

Hope this helps

Greg