Any experienced Dr's / Nurses can help me re CLL Cancer issues please?

[JoyceDivision]

I hope uyou can help me, I fully understand MN's disclaimer and would greatly welcome any advice re the following that is happening. I have tried to include all relevant details so I apologise if this seems long, Iand I think I've got the correct topic but please accept my apologies if I haven't.

Aprroximately 18month ago, MIL was diagnoised with CLL. She was generally fit and well, had a long term cough, slight chest issues but nothing major, slight mobility iussues which she would refuse to acknowledge (knee replacements and walked with a definate sway n her hip...)

Anyway, I can't remember exactly how the tests were prompted, but MIL found out she had CLL. Originally, her 'count' (apols again if I'm not using corrcet terminology) was found not to be too bad, so she was not given any treatment, and just kept under checks. Later, however, she had to begin tablet treatment. With the drip chemo treatment (I think I'm getting this right, as I'll explain later, not in a brilliant position to confirm details with dh)

Over the past few months, things have worsened. Following the chemo and zizo (?) (bone marrow injections) MIL has had to have frequent blood transfusions and is losing quite a lot of weight (she has aklways been ample built and is still about a size 20 but you cans ee a definate weight loss).

She has very little appetite (staff have confirmed this is common), frequently can have the runs and now has had an accident when has been out at someones house, can't walk more than a few steps without needing a rest (she now doesn't leave the house unless we are taking her somewheer specific for a reason by car). Dh has takjen her to see the gp in case she needed counselling. The GP was aware what Dh was worried about and made it very clear to MIL if she felt she needed support this could be arranged but MIL didn't seem to feel it was necessary.

MIL has admitted to dh after a heated debate (!) that she can't really look after herself, she isn't really eating unless it's cereal (we've only just recently found this out so I've said I will batch cook and freeze meals), she often is getting dressed and just leavibng bits of food out in a blazing hot flat, almost in case dh calls in taht he'll not nag her at eating, we suspect... SIL is now calling doewn to hepl out and help MIL wash...

DH has authority to speak to the Dr at the hospital re his mum, so he has spoken to them before, In a previous recent appointment when MIL was obviously getting worse rather than better, the staff explained that the chemo has effectively destroyed the bone marrow. While th CLL is in remission, its obv not goiung to go away. The staff advised that in rare occassions that treatment can have negative effetcs and in this case it has happened to MIL.

What I'm asking is this: DH said the nurse who was speaking to them sort of know MIL (Who is quite private and I think so fed up of this now that she is happy to take on board and not question further whatever tha dr's advise her) and she was apparantly 'quite teary'; when addressing MIL and DH.

Dh did background info on this when MIL first diagnsed and said life span often around 5 - 7 years?

Dh finding this very stressful as he is close to his mum and she almost seems to be, not giving up, but now just being wiped out by everything. If I ask any questions he is very snappy and he often will immediately either believe the worst case scenario or feel they are not being told everyrthimng by the hospital.

Tonigh dh said he thinks MIL is 'on her way out' and won't be here by Christmas.

Long question I'm asking is... looking at the info I've given, realistically what do you think will happen in the future?

I would like to add this isn't what I'm going to share with dh, but so I have some idea and can prepare myself to help dh, and whther or not dh really is being told everything by the hospital or whether they are keeping some black cloud of info away from us....

Thank you for reading and any replies are really appreciated.

[jubilee10]

I'm sorry to here that your dMIL is so unwell. I care for people with haematological conditions including CLL. Everyone is different and treatment that works well for one person may cause problems for others.

I am unable to tell exactly how unwell your MIL is without knowing her but I would be very surprised if her Dr's are holding information back. We are always very up front with patients and relatives.

Firstly I think you should make another appointment to see her consultant. You and dh or dh and his sister should go together as it is hard to remember all that is said. Take a list of questions to ask as you will forget when you get there and a pen and paper to jot down answers.

If they are not already involved then ask for a referral to the Macmillan Nurse Team as they can put help in place for you. Also your GP can organise extra help.

As her CLL is in remission and it appears to be the after effects of the chemo that are causing her problems this could improve over time. I would imagine she is still seeing the haematology team fairly frequently and they would be in the best place to advise you.

The online Macmillan site is also good for information. Sorry I can't link but if you google Macmillan it will come up.

Hope this is of some help.

[JoyceDivision]

Thanks for the post, jubilee10.

Never thought of contacting Macmillan, I know it soulnd very stupid but as MIL 'look' like MIL, ie not losing her hair,m or in a hospital ward, it's easy to forget its cancer.

DH is in touch with the unit at hospital and they do speak to him, MIL is having frequent apps with them, and I'm happy that they would tell any update, whther it's good or bad, I don't share dh's suspicions thta they will with hold any 'bad' news.