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TOPIC: Living with Cancer

Living with Cancer 4 years 2 months ago #2116152

  • Lorna Doone
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My best friend is living with cancer. She was diagnosed with inoperable, incurable lung cancer and her prognosis was not good!!! It took a long time to get the diagnosis and sadly a lot of time was lost when she was diagnosed and treated for a frozen shoulder for up to a year before :( , another acquaintance who died from lung cancer was also treated for frozen shoulder for months before his lung cancer diagnosis.

My friend coped quite well with the chemo, she came to know that the first week she would feel like the pits, the second week she could start eating a bit, and the third week she would begin to feel quite well and then it was ready to start again. ;)

However, the radio therapy was very harrowing for her because of where the tumour was, her osophagus became badly burned and she was unable to swallow anything and she felt wiped out. I think that was her lowest ebb.
But she gritted her teeth and got through it. The tumour shrunk and did not spread outside of the lung but in spite of being terminally ill, she had a very positive attitude and determined to make the most of her time left.

After a while, her maintenance drugs stopped working and she was offered a place on a trial, she felt she had nothing to lose even though some of the possible side effects were not very attractive.

When she first started, she had lots of problem, skin eruptions, fungal infections, sickness, dizziness, diarrhea etc
as well as being prone to any other little infections but here we are 18 months later and she is still enjoying life.
She accepts that sometimes she feels wiped out and on those days, she gives in and has a lazy day, she accepts the minor infections and the panic attacks in the night, but thinks they are a small price to pay to still be here with her family.

My husband and I, are totally amazed at her, she looks well, she's enthusiastic and forward looking and what I think her medical team promised at the outset was that they could 'manage' her cancer and in future it will not be the death sentence we all fear, it will be something that we live with and she is certainly a poster girl for that and long may it continue!!! :)

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Living with Cancer 4 years 2 months ago #2116164

  • Pats
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Your friend is certainly an inspiration Lorna and as you say 'long may it continue'

It's heart warming and encouraging stories like this that can make a huge difference to fellow sufferers.
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Living with Cancer 4 years 2 months ago #2116170

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Yes, I agree Pats, inspirational to hear of someone like that. I have had skin cancer 3 times, not the most dangerous kind, thankfully. I was inspired a year or so ago by the story of Kris Hallenga who got breast cancer age 23 and has started a charity (Copafeel) aiming to get all women, particularly younger ones, to check their breasts.

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Living with Cancer 4 years 2 months ago #2116465

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I was diagnosed with leukemia 14 months ago,and have had chemo therapy all last year,had a fall last december that set me back but after blood and platelet transfusions im still going along ok.
I couldnt have a word said about the hospital as they have been marvelous to me in the 3 times I was an inpationt with infections.
Its sad that the NHS gets such poor press.

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Living with Cancer 4 years 2 months ago #2122479

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I agree with rabu, I had Breast cancer and had to have a partial mastectomy and Radiation no chemo thank god
and i must say that all my treatment in Lincoln hospital was of the highest order from the ward orderlies to the Consultant and Surgeon, It has been six years since my mastectomy and i have been discharged from the Hospital
which is very good but i feel i am being let down by the NHS as when under the hospital i would have a mamogram every year now i have to wait untill every three years, which if it decideds to rear its ugly head again which is not unheard of it could be a long time before it was discoverd again. I have decided to go private to put my fears at rest.

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Living with Cancer 4 years 2 months ago #2122494

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lincolnshirelass wrote: It has been six years since my mastectomy and i have been discharged from the Hospital
which is very good but i feel i am being let down by the NHS as when under the hospital i would have a mamogram every year now i have to wait untill every three years, which if it decideds to rear its ugly head again which is not unheard of it could be a long time before it was discoverd again. I have decided to go private to put my fears at rest.


I would speak to your doctor about it lincolnshirelass, you should continue to get follow up checks and screening i.e MRI or mammogram depending on certain factors.

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Living with Cancer 4 years 2 months ago #2122605

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Hi Pats, have already spoken to GPS about this and after five years and being discharged from the hospital you will only get a NHS mamogram every three years , I do the self examination but would like a mamogram every year so if any reocurance it would be picked up immedietly therfore giving you a better chance of survival. I have had no examinations by my GP since i was discharged from the hospital even though i have visited the GP many times and have asked about further mamograms. it seems that once you reach the five year survival rate you are deemed as cured but i am more worried about a reocurance than i was about the original cancer

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Living with Cancer 4 years 2 months ago #2124828

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I haven't had c but my sister whom im very close to did ... i can tell you what it was like for me & without doubt your families too with the worry of it all , ( ive also lost 2 cousins to cancer & one has had a mammogram all from the same family ) , the day she came round to tell me my ideal world fell apart , seeing my sister upset it upset me to think i might lose her , how could i be her rock yet couldn't stop shedding tears myself , it was on my mind constantly i didn't sleep ate little ..
She confided in me constantly either walking round ( we live round the corner from each other in a small village )... or she would ring me to go for a walk , we would sit in the local church grounds over looking the village & i would comfort her , saying she must think positive & stop thinking shes going to die ... she was diagnosed with kidney cancer & it had been slowly growing in her they think for 6 yrs

Her kidney had to come out , she was sent to Addenbrooks hospital its 45 miles from us , she wanted me to take her , they wasn't sure if it had spread further into her bone or had it spread to the other one , in which case if it had they needed a donor ... of course i said if she needed mine she could have it , my other sister said the same

Thankfully it didn't come to that as they got it all out of her , from day one ive taken her back to Addenbrooks shes now been put on a 3 yr drug trial programme , that can only be given to those that have had cancer & now is free of it ( for the drug trial ) ... they have high hopes for it , its a form of kimo that kills the cancer cells before it starts , there are side effects she gets from it though ... hair thinning , itchy feet & hands , one time i went round after she rang me her face was bright red ..

They keep asking her to up her dosage ,,, but when we go back every 3 months for them to monitor her with scans & Xrays .. we talk to others on it & have been told if she ups it , her all her hair will full out & one chap said they put him on a high dosage & he couldn't walk & his legs hurt him he was taken off it ... so i can see her reluctance

Its all voluntary ... we go back every 3 months its an all day affair

Shes now been in remission for 2.5 yrs & comes off the drug trial in july ... one can only hope this drug will help ..
I can only praise the village doctor for a quick response to my sister that was at the surgery for another matter , asking her was she ok & she said she had backache but put it down to lifting her grandchild up ... from that he said i think il refer you to the local hospital for a scan , from that hospital they referred her to Addenbrooks hospital , one cant praise them enough ...
The following user(s) said Well Said: kes, lincolnshirelass

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Last edit: by jon.

Living with Cancer 4 years 2 months ago #2124902

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My husband, a very fit man who had a full medical before going off to Sardinia became ill on holiday. We came home whereupon he was admitted to A&E an x-ray showed up a tumour in his bowel, not shown in any of the blood tests he had under his previous full medical. He underwent a 10 hour op fought his battle with the tumour and chemo, carried on working during his chemo treatments finally declared clear. Wham bam thank you mam, follow up appt. with oncologist bloods were showing both lung and liver tumours he underwent further op and chemo and would not give in, went back to work as soon as he was able. Having won all these battles he lost the war to a heart attack.

Some might think it selfish, but not once through all this did anyone ask me how I was coping. I make it my mission now to ask the carer how they are coping. This dreadful disease when it's diagnosed affects not only the patient but those all around them. I am grateful to St. Anne's Hospice who picked me up dusted me down and ensured I got the counselling and support needed to give my husband the 24/7 caring he needed.

During this time my younger sister was diagnosed with breast cancer which with all the self examination never showed up until a mammogram. My eldest sister in the USA was diagnosed with breast cancer/lung cancer dying of MRSA and my 2nd eldest sister diagnosed with bowel cancer, this same sister chatting with her GP asked for a mammogram, explaining that her two other sisters showed no symptoms thank the Lord she did as a few days later she was undergoing an emergency mastectomy op for an aggressive tumour.

I am in a PROCAS study where I undergo certain tests. This morning I received a letter informing me that I am high risk one of 8 in 100 to develop cancer.
The following user(s) said Well Said: lincolnshirelass

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Last edit: by chorderlite.

Living with Cancer 4 years 2 months ago #2125304

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Jon and Chorderlite, thank you for giving a perspective from those who have to deal with the outcome of someone being diagnosed with Cancer.and I think you are right more help is needed for the families and friends of the person affected, its hard to deal with the likleyhood of loosing a loved one and not comunicate your fears to the one affected
in my own case i was diagnosed by mamogram with the early stages of Breast Cancer and within three weeks was out of Hospital all done and dusted except for the radio therapy but the reaction of my family and friends was a mixture of not talking about it because it might upset me or or outpourings of grief and as I did not know how to deal with it at that time how is anybody else to know.I have now been Cancer free for nearly six years but am more scared now than at any other time because as i explained my safety net of a yearly mamogram has been removed to every three years and although i dealt with the original diagnoses with an almost casual indifferance (i dont know why) i am so afraid now that it may come back and i wont survive and I know that this is stupid

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