I hope this is ok to ask and not too trivial. But my husband diagnosed with ALL just over a month ago and we both have been in a state of shock. He had 2 weeks in hospital before diagnosis and 2 weeks after having aggressive chemo, followed by 2 weeks chemo as an outpatient he is soon to have tests to see how it is going. He has coped very well so far only side effect is fatigue. As he was warned his immune system was low we have not been out or seen anyone. Are we being too cautious as last week he told his consultant it was our wedding anniversary and she asked are you going anywhere nice. He said can I go out and she said said yes of course as long as we take usual Covid precautions and don’t eat anywhere that might be dodgy!
As he is feeling well at the moment he wants to take me out at the weekend for dinner. I feel really nervous about this. What do other people do, are we being over cautious.
Oh @summer123 it just shows you what conflicting medical advice we get from even medical professionals.
We are now having the responsibility put onto us about keeping ourselves safe.
This in turn means the responses you might receive are very individual.
Nobody can tell you what to do.
Perhaps just remember that very naturally your husband is suffering from fatigue , he has gone through a lot emotionally, physically and practically and so have you, so you both might need rest beforehand and/or afterwards.
Personally I know I am airing on the cautious side, I also have a compromised immune system. Currently I have only gone out on daily walks, masked up.
However we did visit my husbands family last week for the first time in 18 mths and it felt OK, I did distance myself from them.
Perhaps one way to look at it is if you do go out for a meal will you both be able to relax and enjoy it or will you both be so anxious that you don’t enjoy it and wish that you had a special meal at home ???
I hope that is of some help, however whatever you decide have a very happy wedding anniversary and let us know how it goes.
Hi @summer123. I don’t think anything is ever to trivial to ask and I can completely understand why you are feeling anxious about it.
I would normally say to ask your medical team but you have already done that and they have said it’s ok. Understandably, that still worries you. What does your husband think? Does he know you are worried? What’s the weather like where you are, thinking eating outside could be an option?
I have always called the restaurant beforehand and explained that I was shielding and need to be careful. They have always been really accommodating in where they have sat me.
However, having said all of that you still might not feel ready to do that. It really is a personal choice and you just need to do what’s right for the both of you.
Your husband is still so early on in his journey and I can imagine thoughts and feelings are all over the place. Eating out might be the last thing on your mind!
How are you both managing? Do you have a good support system around you?
I think he wants to take me out to feel “normal” but I think it won’t. The weather is awful so eating outside not an option. I think we were both so worried about the side effects of chemo the fact that he feels fine is pushing him to do things. We have tickets to a show next week which is outside and he thinks we will be ok to go. I think my question is did any other people feel ok and think they were well enough to carry on as normal, I know lots of people go to work while having chemo.
We are starting to manage quite well after the initial shock, he is well but nervous for next week to find out if treatment is working.
We have a good support system our children are being really good and have lots of family and friends being supportive.
Hopefully someone on here who is having chemo will be able to offer their experiences.
It’s hard isn’t it because you want to feel a little bit normal, especially if feeling well.
I’d be interested to see what others think X
Hi @summer123 i have finished 3 blocks of chemo for ALL and await date for transplant. Initially we were extremely careful, not seeing anyone other than the hospital staff. The nurses reminded me that they are all going home to their family and living a normal life and also looking after me, so as long as we were careful, we should see family and friends, pref outside and social distance. Obv we avoided the times when my levels were very low but during the better times we did see people and had a couple of meals outside at well known restaurants. It is a bit scary but just be sensible and careful. Best of luck to you both xx
Hi @summer123 I have been thinking about your dilemma all afternoon and it really is a dilemma.
These days treatments are so targeted to the individual patient and some patients do work during chemo but other patients have a very debilitating time.
@Nichola75 has given you a brilliant response.
Yes, so much has happened for you all in a very short time, at your stage I was really on an emotional rollercoaster and still in shock.
The waiting games are so horrible and I am sure you are both very nervous awaiting next weeks appointment.
I am so glad that you both have a good support system, that is priceless.
@Summertime has given you their experiences which are useful.
We know whatever you decide you will be sensible otherwise you would not have posted initially. Keep posting please.
So good you can share your experiences! It sounds as though you were given sensible advice X
Hi thanks @Summertime thats very useful. My daughter said the same about her visiting, she has only been once in the last 2 weeks and took a lateral flow test before she came but she said the nurses are only taking 3 lateral flow tests per week and she was probably safer than a nurse. Its a shame we are going into Autumn and eating outside not a good idea, my daughter said a few local restaurants still doing deliveries so I have suggested that.
What about eating perhaps outside …weather permitting …I.know not all restaurants provide this… just might be a thought.
It’s a difficult decision but sounds as though you’ve really thought it out…
I’d choose to go to a local sea side place and eat fish and chips on the pier …fresh air and I’d feel safer
Thank you @Hmv63, fish and chips on a pier sounds so lovely ( brings back memories of holidays in Cromer) but we live in the centre of England and a good 2 hour drive from our nearest sea side resort. His consultant has asked to see him tomorrow so we are going to wait and see what she says. But the weather looks to be lovely Monday and Tuesday so I am thinking if he still wants to go out maybe lunch in a pub garden.
perfect timing for an appointment. Write down all of those uestions and concerns so that you don’t forget any! Let us know how you get on X
Oh @Hmc63 I can smell the fish and chips from here, yummy.
@summer123, please let us know how the consultant’s appointment goes.
I will be thinking of you both.
Hi , I’ve just picked up your thread, and am very impressed with the considered and supportive post you’ve received!
I am a fit 76 year-old guy, who was diagnosed with High Grade Non Hodgkin Lymphoma in March and have just finished 9th/18th week session of R-CHOP chemo, but have been blessed with few debilitating side effects and still able to walk for an hour or more each day!
I live in Truro which is heaving with non-mask-wearing cavalier people, so I avoid them and wear a mask whenevery near individuals. I have not been to any eateries or pubs since first lockdown in March last year, and certainly wouldn’t do so now!
Maybe I am over-reacting,but as lymphoma is a cancer of white blood cells I am sure my immune system is struggling to cope and could do without the little blighters making things harder!!!
I think you and your husband (if you already haven’t celebrated) should book a table in a nice restaurant having established they are adhering to 2m distance 'twixt tables and are wearing masks Or you could eat outside if the temp gets to 25° in Cromer by mid-week…if it doesn’t come down to Truro and I’ll put you up on my sofa bed and you can get fish and chips and ice cream on a choice of sunny beaches !!
Now @ChemoKen, you need to be careful otherwise will will all be visiting your sofa bed and demanding ice cream. It all sounds so tempting!
Are there lots of tourists there at themoment? I can imagine it’s very busy. It’s great you can still do your daily walk. Half way through the treatment, I hope those side effects ease off a little for you.
Sending lots of special wishes
Thanks @ChemoKen it sounds as though you are doing very well. Your offer sounds lovely but I am sure you will be happier when all the summer visitors to Cornwall have gone. We met the consultant again on Friday who worryingly seemed to have forgot she said we could go to a restaurant and said only stay outdoors but as the weather is lovely at the moment we may have lunch in a pub garden! But we will see as over the last couple of days he is getting severe jaw pain which seems to be a side effect.
Glad the consultant made it clear this time around and you know what is safe to do
You should certainly give yourself things to look forward to. All of us fight so hard to get through our various battles that there’s got to be a reward and some quality of life to enjoy. Hope you are able to celebrate and enjoy.
Thank you, I agree we have to try and find things to celebrate and look forward to. We didn’t go out as he was struggling with the jaw pain. But as the weather was lovely our son came round and did a bbq in our garden and an old friend came and we all sat outside. It was lovely,