Hi , I am new to this forum so I hope I am using the right section. My mother has had metastatic cancer for several years and managed to get through several chemos most of whom shrank or delayed the cancers. However it has gradually spread in her lymph nodes and in her chest. Two weeks ago her lung needed draining as obviously the cancer has spread and we were warned that she probably has only several weeks or so left. They couldn’t complete the drain but thought it would take 2-3 weeks to fill up again. She was discharged home brighter last week and we were making plans but within a few days she felt worse and the fluid was back. She has been in the oncology centre now for 3 days and their doctors have been unable to put in a drain as she needs a larger needle- and this can only be done by a thoracic surgeon. The hospital surgeon has said he can only look at it next week no date set. In desperation as they think this is an urgent need the oncology doctors tried another hospital and their surgeon also said he would try next week.
meanwhile Mum is feeling even worse, and is having to use oxygen. She is very upset as the family are- we feel it is because she only has a short time to live it is not a priority to make her comfortable and improve the quality of her life for whatever remains. Obviously i am making a complaint to the hospital but that will take time to get anywhere. It is really distressing having to watch this and spend my precious energy battling on. WE have 6-8 weeks of this ahead of us- are we going to have to fight every step of the way?
The thing I want to ask is- is this the case everywhere? Or are we just unfortunate that our local hospital trust has not set aside enough resources to meet the needs of the terminally ill? Are we being selfish or unreasonable in expecting treatment to still be given in her last weeks of life to reduce suffering? I personally think making her breathing easier is a priority.
I would value some views here as we are struggling with this.
Thanks. MariaDebs.
Sorry to hear about your Mum and the progression of her BC. I’m sorry I can’t help but I’m bumping this up so someone else might see it.
Hi Mariadebs
I am sorry to read of your Mum’s diagnosis. This is such a difficult situation and our thoughts are with you and your family.
I am sure this feels a lot for you and your family to take in and you may be feeling shocked and confused. If you feel that you need more support there are other sources of help. You could call our helpline – often, talking through your feelings can be a help or you may prefer to contact a MacMillan nurse.
You can contact MacMillan Cancer care on 0808 808 2020 our Breast Cancer Care helpline is on 0808 800 6000.
We hope this is of some help to you.
Kind regards
Sam (BCC Facilitator)
Hi Mariadebs,
I am sorry to hear about your Mum’s failing health. My father became ill with Motor Neurone disease earlier this year and sadly died this summer. My experience of the local NHS trust was terrible -no one wanted to do anything - it seemed to me just because he was quite old he was shelved. Then when it became apparent that he had private medical insurance they (the doctors) suddenly wanted to run every test under the sun some of which were (in my opinion) quite unnecessary! As you can see I am quite bitter about the whole thing. I hope you have better service for your Mum. All I would say is fight, fight, fight every step of the way to get the best treatment you can.
Hope things improve
cheers
Caroline
Hi, Thanks everyone. We have done a lot in the last two days. Sorry to ramble on but I really want to describe the situation. The surgeon’s felt they didn’t have space this week and were going to look at her next week. She was admitted on saturday. Monday she started using oxygen. Weds they found she was anaemic and she was given a transfusion. meanwhile the family got on with it. My sister got hold of the local press and was interviewed. I got hold of the local MP’s office and also made an official complaint to the hospital yesterday morning. The last 36 hours has beena whirr of tel calls or texts made and received. We had to do something. Yesterday the hospital apologised to us and my mum about the position we were in. They finally agreed the operation could be done this week and she was added to the thoracic surgery list today. However no guarantee. If the list overuns today she will be scheduled to use the emergency theatre tomorrow- probably. All the other cases on the list are cancer cases- both diagnosed and yet tobe- its a case of lack of resources as far as I can see.
I am exhausted, not sleeping and off with stress today and probably tomorrow. We all feel so powerless and disheartened. My mother doesn’t realise it may not happen today. She has been starved and is waiting for the op. Today she was given antibiotics as a precaution as she may have the beginnings of a chest infection. You expect the cancer to kill not lack of care.
So me and my sisters are waiting around to see what happens. My sister told the hospital they can inform my mother that it may not happen as she didn’t have the heart. So the Nurse manager went scurrying off to see if the oncology doctor consider this a medical emergency in which case it will happen tonight.
We haven’t got as far as planning palliative care, hospices and discharges- though referrals have been made. She could easily have two months left so we are not writing her off yet even though the hospital seem less concerned. One thing this has made me determined to do- once my mother has gone I am going to take this issue up nationally. Both my sister and I have had breast cancer in both breasts in the past (she’s been clear seven years myself twelve) so we are very much aware this could happen to us. Regardless of whether the cause is cancer this is no way to treat the terminally ill.
However this is no way to treat any of us. All of our stress levels are high. Pateints and Families should not have to battle at this stage. If my mother gets through this I am thinking about setting up a BLOG so that people can see just what the trials and tribulations are like. I saw a young woman of 17 on TV with liver cancer the other day- she set up a BLOG of her experience and was surprised to get 40000 hits. The more people understand what this is like the more it is likely to get changed. I guess also it helps to reduce my feelings of powerlessness - a little.
Anyhow sorry for yet another mad ramble. I’ll let you know how it all turns out.
well done!!! all i can say is your mum would be so proud of you and sisters fighting for her and others too,dispite your own personal grieving your thinking of others like me thank you and your family love sheena x