breast cancer, with depression and financial troubles

hi, I was diagnosed with breast cancer mid March of this year. 

I was originally told I would be operated on within a month, but because of other medical conditions there was disagreement as to whether I would survive the operation. Eventually it was decided that they would operate as otherwise the outcome was spreading of the cancer and eventually death. In the time they spent arguing the tumour grew by 50%. I had had a previous operation that had left me with a frozen shoulder so was told by the surgeon that I would not be able to place my arm in the correct position for radiotherapy and therefore would have to have a mastectomy rather than a lumpectomy, the lymph nodes would also have to all be removed as the cancer had spread to them, and treatment would be chemotherapy followed by hormone treatment.

I resent the time the surgeons spent arguing because the cancer was growing all the time.

i resent even more that after surgery I saw the oncologist who was horrified at the idea of giving me chemotherapy. He had not been consulted by the surgeon and the first he knew of my medical history was my first appointment with him. He said chemotherapy was likely to kill me. What choice did I have but to insist that I tried anyway. Otherwise where was the point of the surgery. I got half way through the course only to find that I was going into organ failure as the oncologist had predicted. So the treatment left was radiotherapy where for each session my arm was forced into position regardless of the frozen shoulder. I did manage to complete the course, but my skin has reacted badly and two weeks after the last session it is raw and occasionally bleeds. I was also left 2 and a half months between chemo being cancelled and radiotherapy started. Everyone else I spoke to had waited only one month.

I feel that the whole process has been mishandled and that the chances of cancer recurring have been greatly increased by the way my case has been dealt with.

to compound the issue because of how ill I was during the chemotherapy and the period afterwards, the business I had been running successfully for 12 years had to close. My husband put the closure in the hands of another company so he could concentrate on me. They ripped us off and out of over £100000 worth of stock we got not one penny. I am now incapable of work because the cancer and it’s treatment has made my other medical conditions so much worse, my husband is my carer and can only work a few hours a week as he needs to be available for me. So we can’t pay the mortgage or the bills. Tried everywhere to get advice and help, including Macmillan supposedly there to help and advise, their advice was to go look on the internet.

i can not walk, we have been turned down for a stair lift because I have blackouts, well stairlifts can have seat belts. So to get up and downstairs I have to crawl on hands and knees. Because of peripheral neuropathy which I already had but which has been worsened by the chemo, I can’t feel my hands and feet so often miss the stair anyway, that results in a slide down the stairs, a painful process when you have had three surgeries in the last 18 months.

i feel there is no one there to help, I had a lot of “friends” including ones I had given both emotional and financial support to over the years. They aren’t there anymore, it appears that since I no longer have anything to give I am worthless.

all this has contributed to the depression I already suffered from for over 20 years and I am now suicidal. The help I got for that was to have the antidepressants changed and a warning that it was obvious that my husband was aware that I was suicidal and therefore if I committed suicide it would be held that he was complicit and would be charged with helping me to commit suicide which would result in a prison sentence.

so I lie in bed waiting for an eviction notice because the council have no obligation to rehouse me until I am homeless.

can anyone tell me why I should carry on?

  • I'd put in a complaint to be honest. Your experience was completely different to my own and such a variation would indicate something is wrong somewhere.

    After my first call to him, my MacMillan advisor came to my home to fill out the PIP form with me and to talk through what other benefits I might be entitled to. This was followed up by him informally whilst I was waiting for my oncologist appointments as he was in a temporary office near the oncologist's office on the days the oncology clinic was running, so he could chat to all the new oncology patients. 

    Best wishes

    Dave

  • Thanks Dave, maybe I should. I’ve also been told I should put a complaint in about some of the treatment I received while in hospital. But I have two problems doing that, firstly I am so exhausted, I already had several debilitating illnesses before the cancer with it’s chemo and radiotherapy, but secondly I always had such good treatment from the nhs prior to this. Maybe I did something wrong to cause all this? I have severe depression and I know that it is not uncommon for depressed people to blame themselves. But with how much has gone wrong, there surely has to be a reason and I can only think it is me.

  • Hi Pepper,

    Here are a few possible causes of sub-standard cancer care in the NHS in 2018 - please read carefully and see whether any of these might be your fault ...

    An average 2.5% reduction in local NHS budgets every year since 2008, despite around 2% inflation in each of those years;

    A 10% vacancy rate across the NHS for consultants, nurses, GPs, midwives, scientists and allied health professionals (the government may have increased the number of posts there are in theory, but more are leaving the NHS than are being trained and thousands are leaving because of the toxic immigration climate and uncertainties over Brexit);

    A 40% reduction in funding for public health and social work since 2010; 

    A 40% increase in cancer diagnoses since 1998. 

    All these things may have had an impact on the stress the people who were supposed to be caring for you were under and led them to making bad decisions and giving less than perfect advice like referring you for chemo when your body was already exhausted and stressed by your other conditions. 

    Unless your initials are AL, JH, DC or TM and you have been a member of the cabinet over recent years, I think it would be unfair to blame you for any of these things.

    40% of cancers are potentially avoidable - that means that 60% of them aren't - so whatever we were to choose to do differently if we had our time again it would make no difference. I drank more than average when I was in my twenties - but so did most of my peer group - and I never smoked. The chances are that it was a random mutation or a genetic pre-disposition which led me (and you) to develop cancer.

    Don't beat yourself up, none of this is your fault (or mine or any other patient who has had a poor patient experience). Depression on its own is debilitating enough - add cancer, other medical issues and financial worries to the mix and anyone would find it hard going. 

    I hope you both manage to keep on going. It is damned hard, when so many things go wrong at the same time. 

     

    Best wishes

    Dave

     

     

     

     

  • Thank you, you have no idea how much your post has meant to me, I’ve blamed myself right from the beginning and to have someone say it isn’t my fault means so much.

    everything seems so pointless, on top of everything else our younger dog died three weeks ago and our older one was operated on for cancer two weeks ago and the would isn’t healing.i can’t bear the thought of loosing him, he has never left my side for 12 years except for when Iwas in hospital. I feel like my whole life is being ripped away from me one chunk at a time until there is nothin left worth living for.

    I’ve been a fighter all I my life, it’s the only way I could survive. The first lot of mental health people came and sat at the end of my bed and one of them said” you’ve fought for as long and hard as you can and you can’t fight anymore can you?” And I agreed I couldn’t, and she said “You don’t need to, we are here to fight for you, you can concentrate on recovering”  and I thought someone finally understood, but all she did was to change my anti depressants.

    i have no fight left in me and I don’t know what to do. But to at least hear someone say it isn’t my fault helps a little. I’ve lost just about all of my friends, some when they found I had cancer and some when the business closed. I had more than one of them tell me that I was worthless now, but most just cut me off. I don’t understand that,I had a friend 10 years ago that got cancer, luckily it turned out to be very early and was easily treated, but before we knew that I told her I would be there for her no matter what. She is one of those that said Iwas worthless.

    im sorry, I am rambling because I am very upset tonight.

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    Hi Pepper,

    I am glad to hear that your husband is at least willing to consider looking at the option of bankruptcy, although I hope that things are not as dire as that. I don’t believe that he has to do any more thinking, as it will depend upon what advice your advisor eventually gives you. It is a case of needing to be open to the possibility of this and to be ready to accept whatever changes are necessary to get you both back on track again.

    Dave is quite correct and has confirmed my fears. Your loan is building up all of the time and there is a real risk of eviction before you get around to putting any safeguards in place. I have worked with elderly people for the past 50 years and am used to hearing about their housing problems. There may be some discrepancy from one area to another, but it is almost impossible for people to get adapted housing, even when they have been on a waiting list for many decades. Has your husband contacted the housing department to determine when you are likely to get re-housed? Tell him to ask for a realistic timeframe, instead of one which will keep getting pushed back.

    I will certainly keep looking for other ways to help you, but, as Dave says, it is worth having another shot at Macmillan. If you get the same treatment again, phone head office, tell them of your experience and ask if there is someone else locally who could visit to help you out. Don’t forget to mention that you need a home visit.

    The best way to find out about your type of cancer is to go to the blue banner at the top of this page. Insert ‘invasive ductal carcinoma’ in the search box and this will bring up previous posts on the subject. You can also add the other details individually to find out more about it. There are a number of ladies on this site who have the same thing. If you are still unsure what all this means, why not phone the nurses on this site? They are here Mon-Fri 9.00 – 5.00 and their number is free to phone. Their number is 0808 800 4040.

    Kind regards,

    Jolamine xx

  • Thanks Jolamine, both for the financial info and for the advice on how to,find out more about my cancer