Newly diagnosed with cancer - what help can I expect

Happychappy

Six weeks ago I took my very fit and able 82 years old mother to the GP because she complained that the top of her arm was a little puffy and sore. The GP referred her to the local hospital breast clinic who carried out a biopsy and discovered she had melanoma cancer of the lymph glands in her armpit and referred her to a surgeon to have them removed, they cannot find the primary cause and sometimes dont?

Two weeks later I took her for her pre op checks at another hospital where the plastic surgeon operates, they carried out checks including a CT scan of the body and found cancer also in the lungs, therefore they cancelled the operation due the following week.

Within the next week, mum really went downhill, very tired and withdrawn and then had a seizure where she was taken to A&E who did a CT head scan and now find the melanoma cancer has spread to three areas of the brain.

Mum was admitted onto a ward and the register spoke to us and told us we may have a few months with mum, the consultant a few days later puts it into weeks. The ward was very dickensian in its visiting times of two x 2 hour sessions, I tried speaking to them but have lost all the fight for arguing, they have a regime and will not alter. There is no treatment for mum other then she takes steroid and anti-epilepsy tablets three times a day.

Therefore I have bought her home and am looking after her, this only happened Thursday and unfortunately with the bank holiday, the "care or support" systems, of social worker, district nurse, MacMillan nurses etc which I have been told about, will not be there till after the bank holdiay, and it is this I am asking please for your advice as to what I should expect.

I am coping at the moment with my wife and sister, however, I really need to know what I can expect to happen in the form of day and night care ? being told what should happen compared to peoples experience of what does actually happen is sometimes a huge difference. My sister has to return home abroad in two weeks as she has a young family, this will leave my wife and I.

Is it reasonable to expect care to look after mum at home in the day or at night, so I can go to work? I have been off work for a month on holiday and unpaid, but I cant afford much more time, but wil not being leaving her for a single minute on her own. Do I have to pay privately for care, my mum receives attendance allowance, and her pension which just pays bills etc

I have never been involved in dealings with cancer, but this is just a never ending nightmare which is totally draining.

Oldernotwiser

I'm so sorry to hear of your situation and, although I've had cancer myself, I haven't much direct experience of your position.

However, the most obvious thing that leaps to mind is hospice care. From what I've seen the care they provide is fantastic, treating a patient holistically and concentrating on quality of life issues.

I doubt that you'd get anything like 24 hour care paid for and paying for it privately is likely to be far more than you yourself earn.

I really would investigate hospice services in your area, at least as a starting point.

All the very best.

Savvy_Sue

I agree with ONW, but after checking for local hospices I would then move on to MacMillan nurses.

Someone else will know, but are there some benefits where a cancer diagnosis fast tracks you? Definitely worth applying for everything your mum is entitled to.

cattie

Sorry to hear about your mother developing cancer & now declining fast since being first dignosed.

I agree that a hospice is probably the best option. Your mother will receive fantastic care there & it will mean that the time you are able to spend with her will be quality time for the most part.

I lost my sister to cancer nearly 2yrs ago now & her demise was very rapid. Her time in the hospice gave her back her dignity & the care she received from everybody there was truly superb. It's meant a lot to me being able to remember her last days spent in such a peaceful, caring place.

In the meantime the Macmillian nurses should be able to offer practical help & advice, but not round the clock care alas.

vivatifosi

Hi Happychappy,

Have only just caught up with your e-mail so apologies for being late. I have been treated for melanoma and it runs in my family, so I can understand what you are going through. I would also check out both hospices and the hospice at home (McMillan and other similar organisations) route.

There are also two melanoma forums that you may want to be aware of, the first is a smaller forum but is UK based. It can be found here: http://www.scansol.co.uk/forum/
The second is a huge international forum and can be found here:
http://www.mpip.org/bb/bbindex.html
If you post on the UK forum you may find that you are able to get information about entitlements. If you post on the international one it is a huge support network and plenty of other family members in the same situation as you are there ready to rally round - don't think you need to face the caring element of this alone.

Happychappy

vivatifosi wrote: »

Hi Happychappy,

Have only just caught up with your e-mail so apologies for being late. I have been treated for melanoma and it runs in my family, so I can understand what you are going through. I would also check out both hospices and the hospice at home (McMillan and other similar organisations) route.

There are also two melanoma forums that you may want to be aware of, the first is a smaller forum but is UK based. It can be found here: http://www.scansol.co.uk/forum/
The second is a huge international forum and can be found here:
http://www.mpip.org/bb/bbindex.html
If you post on the UK forum you may find that you are able to get information about entitlements. If you post on the international one it is a huge support network and plenty of other family members in the same situation as you are there ready to rally round - don't think you need to face the caring element of this alone.

Thank you very much indeed, I shall log on. So far all I have had is promises, the hospital said the Macmillan nurse would arrange the district nurse to call and arrange care through the Maria Curie nurse and social care would be, etc, etc, etc, the only thing I can rely on is the paper boy.

I bought mum home last Thursday and so far in the five days, I have had one phone call and not a single visit from anyone, obviously the shape of things to come.

edinburgh_lesley

Hi Happy Chappy,
Just a quick note to say that my daughter had cancer and I found that for emotional support and practical advice the website
http://www.macmillan.org.uk/Home.aspx
was amazing.
If you join you can ask the forum for all different kinds of advice and they have much knowledge and experience .I made some amazing friends and when I didnt want to talk to my family for fear of worrying ,the forum members made me feel sane.
Just a thought........
My love and hugs to you and your mum xxxx
lesley x

Happychappy

edinburgh_lesley wrote: »

Hi Happy Chappy,
Just a quick note to say that my daughter had cancer and I found that for emotional support and practical advice the website
http://www.macmillan.org.uk/Home.aspx
was amazing.
If you join you can ask the forum for all different kinds of advice and they have much knowledge and experience .I made some amazing friends and when I didnt want to talk to my family for fear of worrying ,the forum members made me feel sane.
Just a thought........
My love and hugs to you and your mum xxxx
lesley x

Hi

I have researched melanoma cancer to quite a degree and understand that my mother has at best a few months, at worst weeks.

My problem and it sounds very selfish is I need to know what help mum is entitled too so I can fight for that, and I dont mean cashable benefits, I mean practical help in the shape of a person coming to her home. So far everything is empty, fobbing off, I am prepared to pack in work for a few months or just pack in, but the problem is, I want mum to have her dignity and not have her son washing and cleaning her, which I would find embarrasing but mum would simply not be able to deal with.

It is the practical side of every day getting her up, washed, dressed in the mornings, I can do the sitting, talking and feeding side, it is the personal side of her care I need help, so she can maintain her dignity, If I have to pay for this, then I shall, but I mistakenly thought the Macmillan, Social care, and Marie Curie systems would kick into touch, but unfortunately not, things like today going out and buying a wheelchair so I can take her in the car to the doctors and just out for a drive.

Thanks again.

vivatifosi

Please don't think you sound selfish, you don't you sound like someone who wants the best for their Mum and that's great.

If you need wheelchairs and disability aids assistance, you may also want to contact the Red Cross. Where I live they offer second hand walking frames, wheelchairs etc at a very reasonable price. It may also be worth just mentioning the situation to them to see whether or not they can think of another point of service that you can access and get help from, as indeed I hope your Mum's GP would be able to help.

Savvy_Sue

Phone Social Services and ask for an assessment for your mum, and one for you / wife / sister as her carers. That should happen fairly swiftly and even if they say that your mum would have to pay for any care they may be able to put you in touch with reputable agencies. Also remember that in assessing whether your mum does have to pay for things, it's her assets not yours which are assessed, AFAIK. I know the money isn't the most important thing and you may want to just pay for it and be done with it, BUT if you are well informed you may get better help than if you believe what you are told, sadly.

Edinburghlass_2

I would have thought your own surgery would be first port of call for a daily visit from a district nurse rather than the MacMillan nurses organising this, although at the later stages the MacMillan nurses will come in for 24 hour care.