I've been called worse

 

Dynamix,

Sorry to read about your situation,
I have had a simular experience in recent years having both lost my dad to lung cancer and having seen my mum go through treatment for breast cancer - all from 200 miles away!!
( I can also empathise with Squaresey, Leslie et all with their recent circumstances)

My advice to you is to find out if the hospital treating your mum has an on site social services team based there.
If so, they will be able to help with all these issues and with getting your mum to treatment etc.
The consultant treating your mum should also have a support team working with him/her who you should be able to liaise with directly.
Try contacting them and introducing yourself as a prime contact.

That is how we approached things with my mum and dad and it made everything a lot more manageable and less stressfull!!!

Also, try not to be too hard on your mum or her partner, stress and possible denial do funny things to the train of thought!!!!!

Best wishes

Chris.

 

sorry to hear about your mum i dont really know much about cancer but i hope she pulls through im thinking and praying for her every night

 

Dynamix..

Should you want to go ahead with a formal complaint, get in contact with PALS (Patient liason service) at your mums hospital.. They can explain hot the procedure works and where you can get free independent support from outside the NHS should you wish.

They also give advice and offer support if there is anything about your mums treatment yu are not happy with. They can liase with on your behalf with the relevant people and help to reduce and confusion or anxitey you may have.

I phoned them when we had issues with my dads cancer treatment etc - they were quick and supportive and provided all the needed information

If your mum cannot make the appointments under her own steam, there are normally ambulance patient transport which can take your mum to the hospital and bring her home again..and they are used to all sorts of access problems!! I think the Dr was bang out of order

My thoughts are with you
x

 

I have finally spoken in person to my mum's doctor and it isnt looking rosy I am afraid to say.

My mum was given a strong steriod in the hospital a couple of weeks ago to test whether she would respond well to radiotherapy - the steriod did nothing for her and radiotherapy would not either on the brain tumors.

The immediate concern is the Liver which despite previous information passed to me by my mum and her partner is still vicious and degrading rapidly. The liver has started to really start shutting down and is causing extreme pain or would be if it wasnt for the morphine that my mum is on. She is subsequently very jaundiced at the moment and the excess toxins in her blood are causing her to become very sleepy all the time.

The cannot be treated by chemo as the official reason is that the chemo was having a positive effect at controlling the pancreatic tumors it was doing nothing for the secondaries. It is now at the stage where nothing more can be done apart from making mum confortable in her bed and being with her as much as possible.

It is deperately sad to admit it but it seems that the end is very close for her and weeks is being optimistic.

We are all rallying around her and helping her to remain positive but she has come to accept that she is very tired of fighting it any longer.

We have been told that she will become increasingly sleepy and will drift in and out of sleep until she wont actually wake up anymore and then drift away. At least she will not be in pain nor aware of it.

We are all at peace but very very sad.

 

Dynamix - I am so, so sorry to read your post.

You have had the information first hand, so you are aware of what is going on now, and can spend the remaining time, as you have put, rallying around her, and making sure that your memories are as full as they can be.

It must be comforting to know that she is not feeling any pain and will be at peace.

My thoughts are with your mum, you & your family

Anna.

 

I'd like to thank Dynamix, Sara, Leslie and all those who've bared their souls on here. Although very sad, this is also a very thought provoking thread, and I'm sure lots of people are getting comfort from it.

Dynamix, my thoughts are with you and your family. Like Anna said, at least you know exactly how your mum is, and are therefore able to deal with things in the way you want to. I'm sure your time together now will be precious, and my heart goes out to you.

My mum was very ill a couple of years ago, and her specialist didn't think it was something she would recover from. She did though, and I know how lucky we are.

 

thanks

we have been treating each time that we see her as the last for some time now just in case - would hate to have a regret of the thing that we should have said or done.

this thread is Sara's really but I know how much comfort it has brought me over the past 8/9 months and has helped me to come to terms with my emotions (yes men do have them ... well sometimes anyway ).

I so am pleased that your mum managed to fight it and recover

I am sure, and I hope, that others will share their experiences on here as this, to me, is a perfect example of a community helping each other... no muppets, no trolls just people, and even quite normal people.

 

My dad has had oral cancer ( as I think i may have mentioned once or twice). He survived, but things are so difficult for him, and for us. This thread has been an eye opener to many - both those with loved ones suffering or who have suffered, and to those with no close experience. I think it helps everyone when you know of someone else in a similar situation and with whom you can share thoughts and grief with. There has also been top advice on here - which can only be found through experience.

 

I haven't posted in this thread because I wanted to keep a distance but your post has reminded me of the prognosis my Mum was given in April this year.
My Mum had lung cancer..no treatment would have improved her life ...and the decision, hers, was to spend the last part of her life with the people who meant the most to her. My Dad and her two daughters.
My Mum came home to her own house, a hospital bed was placed in the very part of the dining room that she always sat..to do crosswords and puzzles..while my Dad sat at the other end of the room watching television. He only had to glance her way and she was there..where she had always been. Daily life was different but with the support of her GP, Macmillan nurses who were the most suberb angels on this planet and controlled Mum's pain, my sister's excellent cooking and my own inadequate efforts to make her last days as normal as possible...crosswords as well until the very last day..my Mum passed peacefully away.

I learned that the fight isn't always to prolong life but to enhance what remains of it.....and it was so difficult, but worth every second.

Be brave for your Mum and return a lifetime of love that she's given you.

 

Jaydee

xx

 

Beautifully put

 

sorry to hear about your mum i hope she wont be in pain and that you get to spend some quality time with her now make sure you appreciate every second thinking of you all at this hard time
Steph xx

 

Just back from a check by the surgeon's department and they say it looks ok subject to a CT scan soon.

Les

 

well done les i hope its good news for you we could all do with some right now i think

 

ive just read this and feel so bad for you and your family. i didnt want to say anything before until you was told by the doctors....my mums tumours were too deep in the brain for the radiotherapy to work. once the steroids were withdrawn she went down hill very fast. the morphine kept the pain at bay but the sleepiness took over. i was in denial about how sick my mum was when she was admitted to the hospital and wish i hadnt been as i feel i wasted the time she had left. i kept telling her she was going to get through it, but she knew the end was near. i was trying to make myself believe it. your mum will probably be very confused and muddled if the brain tumours are making her decline. all the staff told us that it was the best way for my mum to go as she wouldnt be aware of it.
your mum has outlived the doctors prognosis by about 3 months, thats what you have to tell yourself, she fought it all the way and gave it her best shot. all you can do now is just be there. my mum got very frightened when she was on her own. even when she was asleep she knew what was going on around her. mum was happier when she thought that the family was coping. be extra strong now, you havnt got much time together so capture every moment you can. we took the video camera into her room and filmed us all together. i couldnt look at the film for weeks but i am so glad i have a video of her looking happy with everyone there. it stops you remembering how bad it was and gives you something positive to keep.
if you feel the need to chat all you have to do is pm me and i will give you my number.
i dont know what else to say. i am feeling your pain, i am so sorry

 

sara ... thank you.

 

just glad to be able to help

 

Outstanding post Sara.

Les

 

great news les - fingers crossed for the ct scan.

 

That is good news, Les.

 

This thread brings back so many painful memories for me ... I have had to come back to it several times and still have not been able to read it all, but felt compelled to post this. Sorry if it seems epic to some, but hope it will be of help to others. Some may find this depressing, but it is reality and I don't want to dress it up.

This time last year my step-mum started her decline. The previous November (2004) she had been decorating the lounge and had been complaining that her finger and thumb and part of her lip kept going numb and she had been experiencing a lot of headaches at the base of her skull. She had been fobbed off by the doctors initially but after one month the numbness was still there so my Dad took her back to the doctors. They acted very quickly and sent her for a chest xray and CT scan the next day.

On December 1st 2004 they delivered the devastating news that she had lung cancer which had spread and that she now had multiple tumours in the brain. The prognosis was not good. The type of cancer she had was non-small cell cancer which is very aggressive. If it had just been the tumour on the lung the prognosis would have been so much better. Chemotherapy was not an option for the brain tumours as apparently the chemo cannot penetrate the lining of the brain. The only option was for radiotherapy. They gave her a one-time only session of this, as they said it was the strongest treatment they could give and any further treatments would cause more harm than good. What none of us actually realised at the time was that all they were actually doing was trying to buy her time, trying to stem the debilitating effects the tumours would eventually have.

My step-mum did not want to know what was going to happen to her. She just wanted to take whatever treatment was available and fight this thing in every way she could. She was a very strong woman. She had worked hard all her life, working 3 jobs to bring up my step-brother and step-sister on her own. She had met my Dad 7 years previously and they had been married for 5 years when she was diagnosed. She had never asked for help from anyone and we didn't want her to feel like she had to ask for it now. She was a fighter. She was determined not to give up. I have never been that close to someone with cancer before. I have never had to sit by feeling so helpless as you watch someone that you care for battle to survive.

The treatment itself is so very harsh and I now fully understand why some people decide not to have it. My step-mum had radiotherapy for the brain tumours and chemotherapy for the lung cancer. She lost all of her hair, she could barely eat (all her food tasted metallic), her weight plummeted. I have to say that it was a real shock to me to see just how severe the side-effects were - but these were strong doses, so not everyone has such severe reactions to it. She kept getting spasms in her arm becausse of the brain tumours so she had to take epilepsy drugs. She also had to take steroids which had side effects too. For a while the tumour on the lung responded well to treatment and was barely visible on the xray. For a while it gave us some hope, as hope was all we had.

We had a family friend who was a cancer nurse at a hospice. We were lucky. She gave us the cold hard facts on what would happen. We knew we had 6-12 months left with my step-mum if we were very lucky. In the end it was 12 months and we all tried to make it the best 12 months we possibly could. During breaks from the treatment my Dad took her on as many holidays (UK only as she obviously could not fly) and weekend breaks as he could. We all tried to visit as many nights as we could with our children as she idolised her grandchildren and they gave her something else to think about.

Christmas last year was hellish but we were all so detemined to make the very best of it as we knew it would be her last.

This time last year treatment had to stop as her body could not take anymore. The tumour on the lung began to grow again and the symptoms from the brain tumours returned as the time that the radiotherapy had bought us had now run out. She began to lose control of her movements, she could not dress herself, bath herself, or feed herself. This was the worst part. She was a very proud woman and to witness her loss of diginity was heart-breaking.

By the New Year she was bed-ridden. She began to have chest pains and difficulty breathing. She was adamant she did not want to go into hospital and so every effort was made to make her as comfortable as possible at home. The nurses were fantastic and we as a family could never thank them enough. She needed round the clock care and they provided the very best there was. She was sedated and was given ever-increasing doses of morphine to try and make her as comfortable and as pain-free as possible. She eventually passed away quietly and peacefully at home at the end of January this year. She was 57 years old.

I have deliberately not dressed this up. Sometimes it is better to know what will happen as it may allow you to be more prepared for it. I don't think it necessarily makes it easier to deal with. Losing someone you love in this way is something that can only really be understood by those who have been there. You cannot possibly describe the way it really is.

To add another twist, my Dad had been with Dot for 8 years, 7 of which they were blissfully happy. My Dad had deserved to be happy as a few months before he had met Dot we had lost my Mum - she had died suddenly of a heart attack age 47. The day my stepmum was diagnosed was a few days before the anniversary of my Mum's death. My Dad has lost 2 wives in 10 years.

After the death of our own Mum my brother and I had often asked ourselves the same question - would we have preferred to have known that our Mum was going to die? We thought it might have been better to have been able to prepare for it and say our goodbyes etc. We never really had an answer to our question until our stepmum died. The answer was - No - we would not have preferred to have known, as we would not have wanted to watch our Mum go through what Dot had just gone through.

However, there is also a positive, however small. Situations like this make you realise that time is precious. You have to make the most of it. You can't spend your life wishing you had done things, you have to make them happen - take a few risks, worry less about what people think and be as happy as you possibly can, even though you may not always get the approval of others.

My Dad is still devastated and has asked himself a million times what he did to deserve to suffer the loss of the 2 women he had loved so very much. But at the same time he is still determined to live his life, determined not to feel bitter.

For everyone on here who has lost someone, or who is going through the experience of caring for someone with a terminal illness, my heart truly goes out to you.

For those of you who have beaten or are battling cancer - you have my utmost respect and admiration and we all know that for every person we know who has not beaten cancer there are 50 more who have.

I donate Cancer Research via direct debit every month. I already did this before my step-mum got cancer, but if I hadn't I certainly would have done soon after. So for those of you who feel there is nothing you can do to help - there is!

 

thanks leslie..............hopefuly your results will be worth waiting for. you must be worn out mentally and physically, fingers and toes crossed for you

 

A little fiesty - what a heartbreaking read.. thank you for posting a moving and honest account.

I donated to Cancer Research too. I am unable to help with the mainstream fundraising as I am unwell myself, but have just started some volunteer research work from home. If anyone has any spare time - no matter how great or small, I know Cancer Research would love to hear from you and would appreciate your help.

 

That is such a sad tale Little Feisty, I really felt for you and your family. I am so sorry for your father in his sorrow too. It really is an awful disease.

Les

 

a couple of weeks have passed and my mum is still hangin in there - she is sooo brave and continuing to be strong.

i have been up and down to eastbourne for a couple of days a week to help with the mundane stuff like helping her to eat as she is now having to be spoon fed and drink out of a beaker... but she is still drinking and still eating

The time with her is difficult as she is staring into space or asleep most of the time and when she is awake, the conversation is very confused and incoherent. There are odd flashes of mum in what is said but most of it is a different person

She is no longer able to move at all and has had to be catheterised (sp?) and is as comfortable as you can be in bed all the time. She has now been moved onto an airbed that supposedly lessens the bed sores but the amount of morphine flowing around her system probably numbs most pain. She never complains though and does manage to remain cheerful even if she doesnt make any sense

Pain relief has been increased quite dramatically recently and nurses are in every day now from the hospice and district nurses too but my two sisters and I are alternating days to help look after her along with her partner and other freinds/relatives.

This is very tiring for all of us.

A couple of weeks ago we were thinking that she was not going to make xmas, but now I am not so sure - she is a tough cookie and wants to have her last xmas as best she can. She understands that this will be her last although none of us have totally confirmed or otherwise to her as she has not asked a direct question on this. We dont want to lie to her but equally dont want to give her false hope.

I am are trying to get power of attorney sorted as she can no longer write or look after her own affairs - has anyone got any info they can give me on getting this done quickly?

 

Dynamix, really sorry to hear how your mum is. You need to look at an enduring power of attorney. I'm not sure how quick the process.

 

thanks Enigma - have just got EPA forms drawn up and will get signed today.

 

My fingers crossed for your mum and you over Christmas Dynamix. I hope she will be able to get some joy out of the occasion.

My CT Scan is on the 22nd. Can't help thinking about it and the result.

Merry Christmas and happy New Year to all here.

Les

 

Really hard to read this thread, lost my Mum to Cancer 3 years ago. She was 49.
I have been having stomach problems most of this year. I had blood taken yesterday to check for Cancer. Get the results either tomorrow or Monday.

Really sorry to read that Cancer has effected so many on here.