Hi Simon,

It certainly sounds as if it might be worth revisiting this to see if newer technology can shed some light on the problem. Once you know the cause or trigger, you might be able to find a cure for this. I didn't realise that your sister also runs her own business. She must be a very busy lady already.

From experience, I expect that care of your mum will be more 'full on' when she comes home. You may find that she is bed-bound and may eventally have to deal with incontinence issues and a lot more washing. You may also find that it is difficult to find tasty *** bits of food that she can eat as her tastes could vary from time to time. You will also have to watch her medication and liaise with nurses and doctors to ensure that this changes as she needs more pain relief. You may find that she needs to be washed and changed more regularly than usual and, it can be difficult to do things like washing her hair. This can also become a 24 hour a day job, which is just not possible for 1 healthy person to do on their own. Perhaps you and your sister could put it to your dad that this is for the benefit of all of you and not just him. 

Having carers in will ensure that you get incontinence pads, creams and whatever is needed to help to keep your mum comfortable. I can see where your dad is coming from, but I fear that he is only thinking of himself and not of the additional burden that is likely to be placed upon you and your sister. It sounds as if your mum would qualify for carers on her own behalf. Perhaps this is the best place to start?

You have so much going on in your life, I'm not surprised that you feel confused. I hope that you hear more about your mum's condition from the hospital this week. It is so frustrating when they don't tell you anything.

Kind regards,

Jolamine 

Hi Jolamine, I think it would definitely be worth looking into. I've always been put off by the fact that my doctor says I've already been everywhere once and he doesn't think they will find anything. Apart from feeling rough from the travelling it would definitely be worth it if they could help me. I've pretty much just accepted that I will always have this problem and tried to learn to carry on as best as I can.

My sister is very busy, she has shut her business for the time being though to help with my mum. I know she can't be here all the time though. We are In touch with district nurses and we also have Macmillan nurses who visit every few weeks.I think we will need a lot of help as I know it will be far too much for me to do myself. You have already mentioned things I didn't even think off. Hopefully once she gets home from hospital they will get everything in place and give her the care she needs. I think her morphine has been raised so she will definitely need a nurse to come round and help. I'm not sure how mobile she is but from what she said I don't think she can do anything by herself but she has started physiotherapy so hopefully that will help her get a little strength back if possible. I know the food will be difficult, she wasn't eating very well at all and I know she is still struggling to get much down. I can only encourage her, I know if she doesn't want to eat I shouldn't force her no matter how hard it is to see her not eat. 

I think my dad thinks he will be able to help but I don't think he will be able to do much. As long as my mum gets the help she needs that is the important thing. I did speak to the doctors finally. They said they her calcium levels are getting back to normal and I think she has 3 days left on the antibiotics and then they are going to decide the next step and see what amount of care she will need. I think the cancer is now affecting the kidneys as she is passing blood. They said they may look at radiotherapy for the kidney later on. I think she is having some pain in her back as well I'm guessing because of the kidneys so the medication will need to be upped. She also now has a catheter in, I'm not sure whether that will be able to removed later or not. I just want her home although I know it will be hard. Thank you for the kind words Jolamine, it means a lot. X

Simon

Hi Simon,

It would surely be well worth the travelling if you managed to get some answers? I am so glad to hear that you finally got to speak to a doctor today. It is good to hear that her calcium levels are improving and that she only has 3 more days of antibiotics. I would imagine that the pain in her back could well be due to her kidney problems. Be prepared that they may well leave the catheter in as this means that they don't have to move her to get to the toilet, especially if she is in pain. Still, it sounds hopeful that they feel that they may be able to give her chemo later on.

I hope that I didn't upset you by mentioning the things I did, but I felt that you are better to be aware of what you may be facing. Just be sure to ask about arranging carers when you know that your mum will be getting home. I do so hope that she continues to improve and that she will be allowed home soon.

kind regards,

Jolamine xx

Hi Jolamine, no don't worry that's fine. I appreciate you being honest. It prepares me for the reality of what can happen. Thank you, I believe there is a meeting tomorrow between my sister and the social services so hopefully they are looking into letting my mum come home. She said she doesn't feel great but I know they are still giving her antibiotics. Hopefully she can feel a little better and be able to come home soon. I think she would need to have the catheter left in for a little while. I'm not sure how her pain is but anything that helps her would be better. I'm hoping maybe my sister can video call from the hospital. They are only letting her in as it's a meeting to see about where to go from here. I'm glad mum will be able too see a familiar face. I managed to speak to her tonight and she seems ok but still a little confused. She thought it was morning even though it is night. I worry that she's getting confused and she may never be the same. I know there's a chance it's the infection although I believe this can happen with the cancer too. I'm glad I managed to speak to her though. It's so tough when you can't see her but l am keeping my fingers crossed I will be able to soon.

It would be worth it to find anything out with my dizziness. I've spent so long just accepting that I have this problem so anything that could be done would be amazing. It's something I should bring up with my doctor. Thank you for your support Jolamine, it means a lot. X

Simon 

Hi Simon,

I hope that your sister manages to make some headway with social services tomorrow and that your mum can get home soon. I'm sure that your mum will be delighted to see a familiar face in person. What an awful year we've had, when we cannot even visit our loved ones in hospital! It is easy to get confused in hospital, where one day seems the same as the next. In better times we would have visiting times and relatives to keep us right.

I'm glad that you managed to speak to her tonight, even though I can tell that you are upset by her confusion. Confusion can come with cancer, but here's hoping that this is more to do with the constraints of the pandemic than anything else.

You should certainly have a chat with your doctor about re-visiting your condition after so long. Be prepared to insist on getting a referral to get this investigated, as it is all too easy for GP's to let sleeping dogs lie, but it's not them who have to deal with this day in day out.

Jolamine xx

Hi Jolamine, thank you for the kind words. Hopefully we find out more tomorrow and we can start to begin getting mum home. Yeah I'm glad that she will finally be able to see a familiar face. It's awful what's happening with this pandemic. I really feel for all the people who are suffering with this, it really doesn't seem fair. Any other time we would be with our loved ones every chance we got as you said. I am a little worried about the confusion but as you said when you are in hospital every day can feel the same and you don't really know what time it is. Hopefully it is just that she has been resting and was a little groggy when I asked. 

I will do, I know doctors do like to push things to one side if they can. You seem to have to really work to get things done. I will definitely push though, as you said it's easy to do nothing but another to live with it. It can be quite difficult. Thank you again Jolamine. X

Simon 

Hi Jolamine, I just got some awful news. My sister was supposed to be going to find out when my mum could go home but my mum had been put on oxygen. She was having trouble breathing. When they checked they found out her lung had collapsed and the stent they put in was no longer working. They were going to see whether they could drain some fluid from her lung but once she had a scan they found out that she had had a heart attack. The doctor them said there's nothing more they can do and my mum said can I go home. We have just had oxygen and a bed delivered and she is coming home tonight hopefully. I am absolutely devastated and partly numb. I just keep crying. I jist want to be with her. They asked the doctor how long she had left and she just said not long. I don't know whether that means days or weeks. This Is so heartbreaking, I feel like my world has just stopped and I'm struggling to function. X

Oh Simon,

I am so sorry to hear this, but I am glad to hear that your mum is managing to get home. It sounds as if they have been quick to deliver the hospital bed and oxygen and I hope that they have put a care package together for her too. It sounds as if your mum is being strong about this and is still able to express her wishes, when she asked to get home.

 You will feel absolutely devastated, but you will need to be the strong one for your mum from now on in. It is so hard to cope when you know that there's not long left, but at least she is home with the family again. I'm sure that you'll all find it easier having her in the midst of the family again - so much better than not being able to even visit your mum in hospital. It is hard to know whether it is days or weeks and, this is something which we all want to know at this stage.

It goes without saying that I am always here for you.

Kind regards,

Jolamine xx

Hi Jolamine, thank you for your kind words. My mum is home now. I am still shocked but it is good to have her home. I feel like there is a little more calmness now as I can help her. It is such a terrible feeling when you cant see your loved ones. It almost feels like a reassurance that she's here now. The hospital and doctors did amazing. They got the oxygen here within 3 hours and the bed was there at night. I was so happy to see my mum, the relief was huge.

It is hard when you don't know how long you have left. I just want to enjoy the time we have, how ever long it will be I know it won't be long but I do feel lucky to have her home where she wanted to be. My mum is a lot happier at home which makes it easier for me. I am a bit worried everytime I walk out of the room but I guess that's normal. I'm sleeping with her and my sister is round too to support. We have had lots of support, the district nurses and carers are coming round 4 times a day which is good. Hopefully my mum can stay pain free. Thank you so much for the support Jolamine. X

Simon

Hi Simon,

I am so glad to hear that your mum did get home last night and I expect that you are all feeling much happier about this. It is so hard when you cannot visit a loved one in hospital, but all the more difficult when you know that the time is limited. There is always the knowledge that they could pass without any of the family being present - I expect that this was a scary possibility for your mum, as well as for the rest of the family. The hospital has done well to arrange all the necessary contingencies and to get her home as quickly as it did - it just shows that they can move when they want to!

You know that your time togethe is finite, so I'm delighted to hear that you want to make the most of whatever time you have left. If there's anything that you want to speak to your mum about, make sure to do it soon, as there may come a time when she speaks less and less and sleeps a lot more. I hope that her confusion is not so obvious, now that she is back home again.

How is your dad coping with having the carers in 4 times a day? We had this with my mother-in-law and, although my father-in-law found it an intrusion, he couldn't have managed without them at the end. Keep an eye on your mum's pain levels. If you don't feel that her medication is managing this, mention this to the nurses, as they should be able to keep her comfortable, provided that they're aware of the need to do so.

I sincerely hope that you can all get some quality time now that you are all together again.

Kind regards,

Jolamine xx