Deteriorating mobility

Hi Kenny,

sorry to hear your mum has so much else going on like not having a brain tumour was enough!

If you think the appointment is best done over the phone then yes that should be possible but speak with the CNS tomorrow just to check.  It also sounds like you need to make sure you or another sibling are around to hear what is said and ask questions. If she's still in hospital and you know the time of the call it might be worth speaking to the ward to see if there's somewhere private you can take the call.

Is she still on ongoing chemo? And is she still taking steroids? I ask because how to manage the RA will depend on those. That may be more of a GP think to manage once she's back at home.

All the best,

Chris

Thanks for your reply yes I was thinking of being there just in case. The CNS usually rings every week to check in with my mum and dad but since she has been in hospital this has stopped and I don’t think they have been kept up to speed with everything that has been going on to be honest! . The oncologist made the decision to stop her athritis tablets. She said if she starts another cycle of chemo she cannot take these however if they decide on no more chemo she can go back on them. It all depends on her MRI results which I am on edge about - praying it is positive news as she has had a rough few months in hospital. She is still on steroids I’m unsure what dosage she is on as it has changed a few times since she bas been in hospital. 

HI Kenny

sorry to hear about all that's going on.  These tumours really are the gift that keep giving.

I'm hoping you've managed to get hold of your mum's CNS today. There really shouldn't be an issue arranging a phone or video call appointment, We had two years of those! The only drawback with them is that you don't get to see the MRI images.

Something else to consider if you haven't done so already is to get a Power of Attorney in place to allow you to act  on behalf of your parents, especially your mum. It might ease the red tape further down the line, particularly if mental capacity comes under question.

sending you love and light and hugs

Wee Me xx

I'm so sorry to hear of your mum's condition and treatment.  My husband is going through something similar - he is 62 and was diagnosed with grade 4 glioblastoma on 14 May this year - had operation on 16 May and they couldn't remove it all.  Its terminal and he had 6 weeks of radiotherapy and chemo.  He coped with that really well and then he was due to have 4 weeks rest from treatment but on the 2nd week he too became unsteady on his feet and he collapsed in the bathroom on 13 August - he was taken to our local hospital and left in a corridor for nearly 2 days!  Not really looked after that well either.  he was moved to acute medical ward and again not much was done.  He was then moved to another ward and the treatment was a bit better.  All the time he was there he got worse!   We believe he had had seizures which they did not pick on.  His mobility was shot and his short term memory too.  He was on a special air pressure bed to prevent any bed sores but he was unfortuate to have to have a catheter put in which he still has - mainly because it was easily for the medical team so they didn't have to keep changing him and the bed!  He was then discharged on 7 September into a re hab unit to help with his mobility and they eventually discharged him into my care 2nd October.  He also is a diabetic and his medication also caused complications and now we have had to learn to give him insulin injections 4 times a day and monitor his blood sugars.  He is also on anti seizure medication which has been increased over the monthes and now back on steroids.  Our oncology team have been wonderful and we have had several discussions over the telephone with no problem.  We finally were able to make a face to face meeting and his next lot of chemo has been put on hold as he needs to build up his strength again.  We do have Occupational Therapy nurse come in and we have had various aids bought in but he is slowly stopping using them. The NHS is so stretched that we cannot get any other assistance at home!   Any questions we have we have to direct to our GP or the Oncology.  Now he has other issues to deal with as well.  The good news is that when he had the MRI in August we were advised that the tumour was stable and behaving itself.  Its a long haul going forward and I have to work from home which is not ideal for my boss!   

Hopefully you will be able to discuss things over the phone.  We have done teams meetings and facetime etc.

Hi. Have you been referred to a hospice?

My husband had similar issues and the support we received from our local hospice both practical and emotional made a lot of difference. The NHS dealt with the treatment and medical support but the hospice meant we could keep him out of hospital as much as possible.

Hi  so sorry to hear you are going through something similar. My mum is still in rehab but they are planning on discharging her next week back home. Her mobility is not the best now since her hospital stay. She also suffers from rhuemotoid arthristis and had to stop her medication while having treatment. We managed to have a telephone call and received some positive news from the oncologist last week that the tumour is stable and there is no growth at the moment. She is well in herself and she has her good and bad days. They have arranged for carers x4 times a day, a hoist and a bed for downstairs. 

Thanks! no but we do have a local hospice. I will make some enquiries. 

Hi, sorry to hear about your mum. My husband has a Grade 4 glioblastama too but he is not having any treatment unfortunately as it is too advanced and just having palliative care. We faced the same issues with consultations and were offered either telephone or zoom appointments. We opted for zoom appointments and had three, which worked very well. I am sure you can have this too. During the second zoom call we had my husbands brain biopsy results so they can definitely offer this service.

Our hospice gave us great support. They provided a hospital bed as soon as he needed it (on a bank holiday) and set up carers three times a day. Because of them we were able to keep my husband  comfortable at home. He passed peacefully on a Sunday evening with me and our dog at his side..They supported me as well.