Struggling with my partners Watch and Wait

I hope this does not sound weird, I actually looked forward to my treatment, it was time off work and a change of scenery, waited on, a foot massage and of course everyone in haematology doing their best for me.

2 Likes

Thank you for your comments, your experience sounds exactly like my OH. He has had the pneumonia vaccination so that should at least protect him from getting that. I hope that uou continue to remain well.
Luckily we are both getting even busier at work and have thinks happening now every weekend until we go away in 5 weeks so by the time we get back it will be blood test time and then the next appointment with Haematology.

2 Likes

Have a great holiday @Jujuju99 and hope that you can make the most of your time without worrying too much.

2 Likes

@Jujuju99 how are things going with you and your OH?

1 Like

Not bad thank you for asking. He has just finished antibiotics for a chesty cough that wouldn’t shift. The diary idea from his nursing team is providing useful information as you forget how longs things have been hanging around. He is out with his work this weekend for Christmas do, which is nice. His employer has been absolutely amazing with their support especially as he only joined them 2 months before being diagnosed. I think it helps that a long standing friend and ex colleague is his line manager. His step son is struggling mentally with it all as his grandad is also ill and his girlfriend has just been diagnosed with Lupus, so all at once. How are you doing? Anything exciting planned over the next few months?

1 Like

Hi, my partner has told me that he is suffering with a dry mouth as well as a sore tongue he has mentioned before. He is not on any treatment atm for the Chronic lymphocytic leukaemia (CLL) and he said it started before his recent chest infection. Any thoughts? Or should we ask his haemat-oncology nurse?

1 Like

Hi @Jujuju99. I think it’s always good to mention anything new to your husbands medical team. I’m the meantime I hope there are others who can share their experiences.
I’ve also copied in @BloodCancerUK_Nurses as they may be able to advise further.
Please keep us updated on how he is doing :blush:

2 Likes

Hi @Jujuju99,
How are you? Thank you for asking this question.

As you have suggested, it is always a good idea to run past any concerns or new symptoms via the clinical nurse specialist team. It allows them to offer advice in accordance with your partners blood results and individual circumstances.

When immunity is low, as it will be in your partner, regardless of current treatment status, bacterial & fungal infections can be common.
Dry mouth and and sore tongue can be a result of such and can also arise in conjunction with other infections or if he is simply just feeling run down. It is also worth noting that if he has been prescribed antibiotics for his chest infection- these may also exacerbate his symptoms in the short term.

It is also a good idea for him to be checked over by his GP or local pharmacist as they can often provide relief with topical solutions or mouthwashes.

Additionally, simple practical tips like drinking plenty of water, staying clear from spicy, hot & acidic foods can help.

Please do give us a call should you have any other concerns.

Take Care, Lauran

3 Likes

Great thanks, i have done that, Haematology have suggested GP. Keep well everyone.

6 Likes

Hi all, i hope everyone is well and keeping positive. I haven’t posted for a few months as i have been rather busy with the NHS day job lol but today i am struggling and i know that i have an amazing support network here. My OH has today had his next lot of bloods on W&W. Since diagnosis last June his folate has dropped significantly and his cholesterol and lipid profile has changed for the worse. His GP is treating the cholesterol but we are waiting on Haematology input still for the rapid folate drop. This evening i am feeling very apprehensive about the bloods he had taken today (also CT sinus for an ENT problem he also now has)! He has lots of general aching in joints which i am sure are due to a very physical job, long working hours and the fact he is almost 59. I just need a sense check for my brain and this is a safe place for me to verbalise the worry. Thank you in advance for the response that will help me settle my mind.

3 Likes

Oh @Jujuju99 great to hear from you and this certainly is the place to verbalise your apprehension and worry.
I believe that bottling up feelings just makes them worse.
We are always here and perhaps the feelings you are having are just natural as a patient or their OH.
I think you are doing really well because you are so insightful into what is going on for you.
Perhaps it is because you care that you will have feelings, so try to just accept that they are there.
Please do let us know how you are both getting on and look after yourselves.

1 Like

@Erica thanks for responding. Hopefully all will be good on the Chronic lymphocytic leukaemia (CLL) front, will update when we know. Take care x

2 Likes

Hi @Jujuju99. It’s good to hear from you.
I’m glad you posted because this is the space where you can say how it really is for you.
I think both the patients, and those close to them experience the same worry and anxiety when waiting for results. As much as my husband reassures me that it will all be ok, I know what he is thinking.
Of course you’re going to worry, it’s only natural.
How is your husband feeling about things at the moment? Is he feeling anxious?

2 Likes

@Nichola75 he is OK and says he isnt worried at all so that is good, although im not entirely convinced just knowing what he is like. He has really bad nerve impingement in his back to the point the consultant was surprised he was moving ok and had no pain. Consultant said no pain no operation but once pain start come straight back as can’t be left. That was 5 years ago, pain there but he refuses to get it looked at as he won’t have an operation so says no point in going back. one battle at a time lol. Thanks for reaching out and take care

2 Likes

Hope you’re feeling a little better today x

2 Likes

Hi @Jujuju99 Isn’t it difficult being an OH when you are actually powerless over what they do, you have to just stand back and watch. Yes, one battle at a time.
My husband tends to put his head in the sand, especially if anything emotionally is involved !!!
Look after yourself and take care.

2 Likes

So i found out today that a business acquaintance of a number years, that i was trying to reach today, passed away last month. His business partner told me that he had a number of infections for a few months, aged 52, and in January was diagnosed with leukaemia. I am assuming it was some kind of acute myeloid as he had chemo, followed by numerous infections and them ended up in a coma and passed away in ITU. He wanted to tell me personally as he knew about my OH and is a regular contact for me and didn’t want me to hear by email. I am upset more than I imagined because of the loss of a lovely 52 man leaving a wife and 2 kids and because of the reality that it could be my one day, and it could happen that quick. We are still waiting for last blood test results too.

2 Likes

Hi @Jujuju99.
I’m so sorry to hear your sad news. It must be really hard to hear and of course it would touch a nerve with you. Often it just highlights our worst fears doesn’t it which is only natural. Im so glad you were told I’m person and didn’t have to read it online. That was really thoughtful.
Waiting for results is so hard to so I imagine this has been a really tough day today!
Please be kind to yourself and if you need to talk things through, remember the support line is open tomorrow X

2 Likes

Oh @Jujuju99 I am really sorry and I also find people passing away, especially from blood cancers, really, really hit me in the pit of my stomach. I am far more emotional since my diagnosis and it hits my mortality.
Waiting for results is also horrible so really look after yourself and be kind to yourself.
Please tell us how your blood test results go.

2 Likes

@Erica @Nichola75 thank you both. I willbe in touch when we have results. We are out in London this evening and off to Brussels for 3 days tomorrow to make some new memories somewhere neither if us has been before x

3 Likes