HI. I have joined this group as it is more pertaining to myself, and I can also view the main website which is extremely useful.
I was diagnosed with the above some 5 years ago - I was on the watch and wait system, as apparently, they do not want to treat unless it is absolutely necessary. I was 69 last November and in August felt unwell, and moving on and I am this month on my 5th cycle of chemotherapy (two drugs) one which is the cause of hair loss. Some people might just find it thinning I believe. All I can say, is, that I have known for sometime about this condition, but because I was told all the time my bloods were good, and so forth, I never had any more scans. Then I suppose COVID stopped the regular "Physical Check- up". I have also been told that after chemo I will be on a two year maintenance of chemo I am not sure yet what that entails, but soon will. I believe it is six times a year.
For anyone facing chemo for the first time, it is hard to know what to expect and it is true that everyone is totally different. There are of course side effects, but, in my opinion, manageable and your cancer team will see you through it. Mine have been brilliant and I am being treated at my local hospital. I have recently had friends who, with different cancers, had to be seen in London Hospitals, and they have come through it, out the other end and enjoying life. I am aiming to be just like them!
My questions are more like - can I mix freely in the two years I will be having treatment - or is it a err on the side of caution again. I have this time, during treatment, kept pretty much to ourselves - and very few visitors, even for a cuppa they wore masks, as this winter, with re-emergence of COVID and flu - thought it would be best, but having said that. I still have to go the hospital appts, mix with the people and staff there, walk to car parks etc., so it getting a healthy mental balance between it all. Would very much like to hear if anyone on here is going through maintenance at the moment and can give me some positive pointers.
Take care
Hi again Glann and well done navigating over to this group and putting up your post.
I won't repeat what I put in my reply to your first post (but you can always find your older activity by hitting your community name and look for activity) I have not had Maintenance Treatments as it would not help me but the link I have put up on the left will unpack this and lets look for any member who has had the treatments to get back to you.
To address you questions..... anyone who's immune system is suppressed due to treatments or living with a blood cancer needs to be careful as the Infection Risks are always there.
Good morning Glann
Treatments are selected and proposed based on everyone's individual needs and possible future condition developments. Not everyone gets maintenance as it just does not work for some conditions..... but treatment will always come with risks especially infection risks.
As for your mobility, the less you do the longer and harder the recovery will be. That is why I strived to keep walking even when connected to my 2 IV pumps.
When it comes to infection risks - in simple terms life has to go on…… and it’s your choice.
If we transported the question back to this date in 2020 before covid had come along there would be less focus on infection risks. But infection risks were always there and we all navigated the best way forward for our own circumstances often blindly with a lack of complete understanding.
Over the covid winters of 20/21 and 21/22 there were much less general infections and this was all down to the wearing of masks (incidentally I was wearing masks in hospital way before it as a covid thing) and our general awareness of infection risks and hygiene.
We all have now to assess our own circumstances and do what we need to do to reduce infection risks based on our recent experiences (and we have had lots of practice over the past few years) and get on with life…….
Infection risks unfortunately are here to stay and the majority of the population are not that affected by this - we unfortunately are and will always be ((hugs)
I don’t know where you live..,,,, but we have SNOW 
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This is at our daughters who lives just the other side of Inverness on the hills above Loch Ness
Good on you walking - this sign is everywhere in our Heamatology Department and it’s very true.
……. I must have had the fitness level of a 90 year old after my second Stem Cell Transplant as I was in bed for about 3 weeks and left in a wheelchair.
We always tried to get out, even during the most demanding treatments. We are surrounded by beautiful countryside and can walk for miles and not see another person.
We have also been to cafés and restaurants even during my treatments but are very carful where we go and what time we go.
We go to places we know very well and they know us and my circumstances so we always get a table that is ‘safe’…… but places like supermarkets are a no go.
Keep safe but keep fit.
Good morning, the Site Search 
tool near the top of the page will allow you to do word and subject searches so try putting in 'maintenance' and have a look..... and as always you can hit reply to any discussion thread and see if the member is still using the site.
Food is fuel and you need it........ it's nothing about taste.... it's about getting fuel into your body.
You are doing the right thing. don't sit with a plate of food...... mindless nibbling throughout the day is the best way forward. I lived on regular small cups of good liquidised homemade soups for months.
3.5 liters of water for you is far to much........ if you are doing 2 liters well done.
As my CNS always said "no pain no gain' when ti came to getting active.
Yes you are getting there 
Temperature is going up so most of the snow with us has gone but daughter lives much higher up so it will take longer to go.
Heavy legs is most likely down to the lack of activity and muscle wastage….. you just need to keep some activity going then once your treatment is complete you start to build back up.
