What is normal

Hi Mike,

Lots of questions and it would be good to have a look at the Life after a SCT - A Survivor's Guide discussion as you will get an wide view.

My straight answer is there is no normal. Following my first Allo SCT (June 2914)  it was like I had not been through anything, fllowng my second Allo SCT (Oct 2015) it was two years recovery, hit my community name to get a taste of my journey.

Muscle and weight wastage can be massive. I was 112kg when treatment started (late 2913) went down to 85kg in about 4 months, was up at about 102kg in March this year but was told I was pre-diabetic so now down at a steady 89kgs.

I was told by my dietitian that there is now evidence that you can eat yourself away from cancer but a good healthy balanced diet will improve wellbeing and overall health and a healthy body may help keep us away from cancer.

Yes, it is said that sugar can feed cancer. The main thing I have cut out since being told I was pre-diabetic is sugar and I just don’t miss it now.

The alcohol question should go straight to your team. I was told nothing for about 9 months but as I had an Allo SCT I was having immunosuppressants.

My head SCT Consultant told me that going through a SCT was like doing a boxing match and a marathon every day I was in hospital and this was done without any training

She also gave me a basic scale for classifying where I was on the recover journey.

50% = when in the hospital going through the transplant process.

60% = significant medical/physical issues that do not allow any physical activity apart from a shower and short walk and not able to prepaid food. Reliant of others for preparation of food.

70% = Significant medical/physical issues that do not allow any specific physical activity (not including a shower) but short walks and making a pot of soup. Will nap after the task.

80% = Physical issues that limits you to one activity per day. (not including shower) Able to prepare some food for a couple of people but most likely still taking a nap after activities.

90% = Some physical issues remaining (weak legs etc) but able to do a few tasks and may not be fully fit for permanent work but could do part time work. May have to .take a nap after doing tasks or work.

100% = No physical after effects and able to do multiple tasks including being back to work.

Hi Mike,

I agree with highlander Mike, there really is no normal, I think you have to go at your own pace and do what feels right for you. I was 80kgs pre SCT and dropped to an unhealthy 60 kgs (I’m 6 foot tall). I was basically told to eat anything and everything I could to get weight on. After a few years, I eventually returned to my pre-SCT weight and now I’m trying to lose some as I’m at 85 kgs. 
The way I look at things now is to try to be more natural. My diet is still not great but I try to stick to “real” foods, but I’m not always successful! The big thing I think that has helped me is to try to limit stress in my life - I will never be 100% certain but I’m fairly certain stress was a major contributor to me getting what I did when I did. 
I think reaching an equilibrium where you feel content is probably important. I’m not a great fan of following particular diets or lifestyles that someone else is promoting, for me i think it’s more important that an individual is happy with the diet and lifestyle they follow for themselves. Muscle mass took a fair bit of time to come back, I would say it’s only in the last 18 months or so (3 years post SCT), that I’ve felt back to the fitness levels I had pre-illness.

As to alcohol, I hardly touch it at all now. However, I think this is a personal choice, I had a few problems with mind-altering drugs during treatment and so I purposefully decided to stay away from alcohol as I was recovering. I haven’t missed it, but then I wasn’t a massive drinker before. I think it comes back to what I said above, and if alcohol is part of your overall contentment, then I shouldn’t think it would do any harm and will probably do you some good if it helps keep you in your own personal equilibrium.

Greg

Hi,

just take it steady, you are a statistic of one when it comes to recovering after an auto SCT!

as for sugar, I think this rubbish all began when people realised that PET scans use a radio-opaque sugar to measure cancer activity. One thing I learnt years ago in Anatomy and Physiology (I was an OT before retiring!) was that the human body transforms everything (yes, everything!) into an energy form it needs to function. Building muscles etc use enzymes formed from the protein in your diet but energy is supplied by a form of sugar which your liver transforms from your normal diet including fats and carbohydrates. 

So please don’t fret, but eat and drink a healthy diet, and don’t forget fluids (that’s non alcoholic ones) as they too will help your system to gradually return to a new normal. 
hugs xxx

Hi Moomy, 

Thanks for the reply.

The sugar thing was bothering me as some people can be quite adamant about it yet when I read up it is clear all our bodies cells needs 'sugars' and that there was no evidence that zero sugar was going to stop cancer.  I accept that excess is not good but did not want to get into habit of looking at everything I ate for 'added suagr' content.

I was good with water when having chemo and the SCT but admit to having stopped drinking as much in the last few weeks.  Will now go a fill the pint glass!

Mike

Hi Greg

You always seem to have very wise words!  I was also very stressed at work before Lymphoma and it does make you wonder.  Whilst starting to do a little work I intend not to let the work stress me as it used to - the only stress in my life now is watching Spurs play!

I think the 'natural' route makes sense - avoid ready meals etc but not to beat yourself up about the off fail.

The 'fads' are difficult as when in out position and someone is saying if you go vegan and drink liquidised cabbage the cancer will not return - you question yourself as no one wants to think 'if only I had...'.  It is a guilt trip.  However, I will keep it simple and try for a healthy mix with occasional treats to keep me sane!

The muscle issue came to a head when the wife was able to lift a heavier weight that I was able to !

Thanks again for your time,

Mike

Thanks Mike - it is difficult as you want to make sure you are at the right point on the curve and anything that seems out of the ordinary has a habit of making you worry ....'why'.  Will try to take on board that there is no normal.

Mike

I was a bit concerned about ‘free’ sugar in diet when hubs was diagnosed with diabetes but in reading up again I found all the documentation reassured me that my memories were correct!

take it steady but keep trying! 
Hugs xxx

Hello, 

Things generally going OK here but as you all know everything that is not deemed normal can make you worry.  

I am back working for around 4 hours a day which is good and keeps me busy.  Also getting out walking / cycling.  

I do find that the next day after anything 'strenuous' that the muscle aches are really bad. Also if I sit in one position for a few hours - I can hardly move and need to slowly engage the body. I am finding a lot of joints and muscles that worked well before SCT are now a pain - strangely including jaw pain and around rib cage.  

Is it common for the scalp to itch as the hair grows back?

Finally, I am eating ok although not at same sized portions as before SCT. I do seem to get a lot more stomach upsets / indigestion - was this something others found?  I wonder if the IV antibiotics we all seem to be given immediately after with infections might be to blame with killing off the gut bacteria - do any of you take probiotics?

Thanks,

Mike

Hi Mike, I lost my hair three times and yes, my scalp was itchy when my hair started to grow.

I now don’t eat like I did before treatment and am actually happy with this. When I was very sick with the Melphalan I developed the “most impressive Hiatus Hernia” it has not been a big problem so they don’t want to touch it so am taking Lansoprazole am/pm and this helps a lot.

Hi Mike,

yes! A regular gentle head massage might help here, daughter found that useful.

about the eating problems, again a yes, daughter found she reacted quite powerfully with pain and bloating with wheat and milk, she found if she went lactose and gluten free for a week or so it helped, she’s not coeliac but is sensitive, and finds that every little while she has to be very careful. She’s found cheese, butter and cream generally easier to cope with than suspected but milk (which she used to enjoy) is now oat or similar substitute. 
probiotics is something I think to discuss with your team.

Hugs xxx