A few questions / observations

Hi Mike Whatcanyoudo and welcome to this corner of the Online Community.

I am Mike also Thehighlander and after looking at your profile it sounds that you have been through the mill as many of the folks on these forums have been.

Your post CT issues/anxiety will be very real for everyone who has been through treatment. I have never had a PET scan - only CTs so don't actually know the reason behind this but I am sure that they are doing the required scan to check you out.

My mass was on my neck and I am just over 5 years post my treatment (R-EPCOH) and i still check my neck to the point my wife shouts "don't do that as you inflame your lymph nodes and feed your what if's?"

It took a good 3 years for the numbness in my hands to go away - I actually had two small rugby balls that I used to sit and work my fingers to help circulation. My legs and arms  have taken longer to recover and due to muscle and nerve damage I will be left with pain in my neck for a long time....... but I am alive and kicking.

My journey included two Stem Cell Transplants with cells from my brother so my recovery has taken longer than most but it does improve, you just have to patient but at the same time keep active.

This is a great paper that works through the post treatment challenges.

Hi Mike, I see this is your first post, so first read this paper it will explain everything you are feeling now and why life has not gone back to normal https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

As for the scan that's a question to ask your specialist nurse or consultant as the will be a reason and an educated guess would bee you interim scan was so good they expect total remission so feel a PET scan is not needed, but it is a guess. Fatigue can last a while or a long time, same with the neuropathy and sadly no one can say will it be permanent or things will improve, for me it was permanent after 8 cycles of rchop for dlbc. It is worth asking about a vitamin D blood test as low levels and lymphoma go hand in hand and if it is low it will make the fatigue worse. Vitamin B12 may help with the neuropathy so have a discussion with your GP or consultant. Many do start feeling where the disease was to see if its returned try not to as you will only irritate the nodes which is not what you want.

Life changes after treatment and no one tells you so do read the paper as you learn what your new normal is and once you accept that you will find life easier.

john

Hi John

Thank you for taking time out to reply so quickly.

I will read the paper. I suspect I was expecting too much and will have to adjust and slow down. 

Have a good evening.

Mike

Hi Mike

Thanks for the quick reply. It is really appreciated.

It is good to learn i am not entirely mad on the anxiety front!

I will get my wife to shout or throw things at me if i am seen feeling the neck! As you say ...its not easy not to have a 'check'.

All the best to you. I had read your profile so am aware of what you have been through and you have done so well.

Mike

Hi Mike, at times, living the post cancer journey is like living in a parallel universe - you can see your old life but regardless what you do you can not get back on that same path. 

Following my many years of living this post treatment life, a situation I was unwillingly put into. It did actually make us review life and everything that we once thought important. 

Some things from our old lives are still in our lives but various aspects of our old life that were once seen as important were put in the bin and we don’t miss them.

Yes, it does take time, but the paper we have posted does help make sense of this part of recovery.

We are always around to help out or just talk.

Hi,

Sorry to come back on here so soon but think post treatment pre scan anxiety at record levels.

It was all fine before Sunday - good interim scan and treatments dealt with OK and carried on working.

Sunday I suddenly worried that an unrelated eye problem from a year ago may have been misread by the eye consultant at that time, he reported a fast developing cataract which has not get been operated on as was likely to be needed in April but I was in middle of RCHOP.so haven't followed up.

Am I right that histology of the biopsy (they got good samples) should tell then what type I have and I am safe thinking they got it right?

Then since Sunday I have been off food which I was like just before diagnosed.  During RCHOP couldn't stop eating.

Also got in a sweat walking into work today (no night sweats) and suddenly ive convinced myself it is all back.  If I rationalise it all I suspect I am being silly but....

I had a bad cough as the first symptom (lung nodules) and no cough back and lumps on neck still all gone.. so there are positives.

So after RCHOP treatment finished (number 6 was 4 weeks ago) can things like appetite come and go and body temp control be erratic?

Sorry to ask these but have got into a panic and seems to be escalating!

Thanks,

Mike

Hi Mike, oh life can be so complicated....

To answer your initial question "Am I right that histology of the biopsy....... should tell then what type I have and I am safe thinking they got it right?" In theory there is a very high percentage that they got it right - but who knows - sorry, but it is all a faith and trust thing.

Faith that the person doing the pathology was on the ball and trust that your team used the best available treatment for your presentation....... your treatment has show a good response so be expectant that all is ok 

I was eating like a horse during treatment but the steroids was driving this but once off the steroids my appetite was hit and mix as was my temperature. Your body has been through something that it was not actually built to go through so it will take time for everything to calm down.

You are going through the post treatment high's and low's...... we all have been on this journey and the mind can be so wicked at times. Even 4 weeks ago (I am three and a half years post treatment) I was waking up at 3.00am in a sweat........ I had a cough and my temperature was up a little...... so yes the 'what if's' still kicked in. But I am now able to deal with these issues much quicker and look rational at what is going on and deal with it.......... open the window, let some fresh air in during the night...... it was warm up with us a month ago!!! Being able to focus on the positives, outweighs the negatives.

If you have looked at the paper, it is worth looking at it again and try and unpack each topic.

So a sheet of paper per subject heading. Start detailing the things you have done already to move life on in each area and then start to set some achievable goals to work towards. 

When you achieve the first goal on each lists, tick it off and then put a new goal at the bottom of the list. By doing this you can actually see your progress and celebrate achievements. When I say celebrate I do mean giving yourself treats and gifts........ you have life - celebrate it.

The headings would be:

What steps are you taking to regain trusts in your body?

What steps are you taking to regain trust in yourself?

What steps are you taking to overcome living with uncertainty?

What steps are you taking to deal with the world?

What steps are you taking to regain mastery and control of your life?

Try it, the future is sitting in front of you - think about driving a car. The big windscreen shows the future, the past is in the little mirrors and is getting smaller and more fuzzy as we move forward.....if you concentrate on the past you crash.

Thank you Mike, 

Your comments made complete sense and I will read again and try to take on board the comments about the future and goals.

Where would we all be without the experience of those like you that have 'been there and done it' I dread to think.

KR, Mike

Great that this has helped Mike, we all strive to work together to find our way in the darkness and it does help when someone comes along with a torch.

This is actually the first anniversary of me being discharged by my team, no scan, no clinics...... it took a while to get used to the safety blanket being taken away as this had been part of my life for 19 years.

Scan-xiety is a real thing, this is a good arrival about the subject.

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 All,

I just wanted to say a few things that may be of help to people lurking in the background (as I did for a long time!) who are starting out on the DLBCL journey.  I have to say I found reading the many threads a great help in learning about what I could expect and I am sure others do also.

I became ill around October 2018 and was diagnosed in January 2019.  I did not actually post anything until June after my six cycles had finished and had a 'wobble'.  I became very anxious and nervous about the future, the final scan, relapse, everything.  A big thanks to Mike and John for their quick advice, it was so welcome and appreciated right at the moment when I needed it.  Both are so dedicated and I cannot express enough gratitude.

Anyway, this takes me onto the news this week that the CT scan (as was the interim PET scan after two cycles) was clear and the R-CHOP had done what it was hoped it would do.  The words 'in remission' were a great relief to hear. I am fully aware that this is not out of the woods quite yet and the risk of relapse remains. The next goal is 365 days clear and then another two years.  I was told the biggest risk is in the first year.

I will no doubt still be checking for lumps and question any sweat, ache or cough but hopefully I am learning to live in the moment and not dwell too much.

I think I was so taken aback by the wobble about 4 weeks after treatment finished but it is clear from other threads that is quite common.  It does pass and is possible to get under control.

I suppose my reason for this note (other than the main one of thanks to Mike / John) is to tell those of you starting out that it can be done and you can get through this.  I love the expression that Mike uses - that they have more tools in the toolbox!  I recited that one as I went into see the consultant for the scan results!

For me, the actual RCHOP was not too bad - no infections.  Five or so 'high' days followed by a plummet in physical well being and emotions followed by a good week before starting it all again.  I followed the advice seen on here of drinking loads which I am sure helped.  I also tried to walk lots each and every day.  It is so true that you don't feel like exerting yourself - but do it - you will feel better for it.

The final thing I wanted to say is that I saw a message on here and someone was saying how cancer changes you as a person.  That hit home and I do feel different now to 8 months ago.  Very different and not necessarily in a way that is bad. My values have changed and keeping people I work for happy is not top of the list.  I have also struggled when telling people that I am in remission as it is clear they expect the old you back immediately and that you can do and cope with everything you could before.  I am not sure that will be the case. The words when you explain you will have worries of relapse for a while yet do not get heard. I understand that they are pleased and happy for you but part of me wanted to explain I was not entirely the same as before - does that make sense?!

The NHS and treatment at Guys Cancer Unit was amazing - such dedicated staff.

I will keep looking in as while I have not posted much, I feel like I know many of you and your individual journeys very well.  Given that much of this is the battle in the mind I may also be seeking help and advice with future 'wobbles' or relapse worries!

Wish everyone of you the very best.

Mike