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?

  • Hello Pepper. I'm sorry you had such a difficult evening but pleased you thought to phone Samaritans. I can see you've had some lovely caring responses from other members of the forum but I am going to email you with some additional information which I hope will help you if something like this happens again.

    Kind regards

    Moderator Sarah

  • hello Dragonfly, unfirtunately I have no choice of hospital unless I pay to go privately which I cannot afford to do, but thank you for your kind thoughts

  • thank you Sarah, I’ve received your email and will bearin mind in case I need to use the info.

  •  

     

    Hi Pepper,

    I am so sorry to hear about your experience last night. I am sure that the contacts that Sarah has given you will be helpful, although I hope that you never have recourse to use them. Have you looked into a debt arrangement scheme which can reduce your debts and payments and/or freeze interest rates and payments, or have you considered declaring yourself bankrupt? As far as I understand, you cannot be put out of your house if you are ill and do this, but you may need to put the bankruptcy in place before your bank or mortgage provider foreclose on you.

    If you are bedbound why not write a letter to your local Citizens Advice stating this, outlining your medical & financial history and asking if they can help you or if they could advise you where to turn for help. It might also be worth contacting Age Concern and asking them the same question. It sounds as if you should be in receipt of some benefits and these might help you on a day to day basis. This is something that your social worker should be able to help you with. Phone her again and insist on speaking to a social worker. Tell them what has happened financially since you were diagnosed and stress that you desperately need help urgently.

    You could also try contacting Macmillan again and possibly try to get a different person to help you out. You should be able to phone them, but you may also find that your hospital has an information unit for you to contact.

    You seem to have been dealt a rough hand with those who are supposed to be caring individuals who are there to help you. I would have expected your support worker to have been able to find out the best facilities for you to contact. The advice given by your psychiatric nurse is deplorable, given the fact that you are bedridden. I hope that you tell her just how useless her leaflet was for you and, ask if there is anything that she can offer that would work for you. Make her look at you as an individual person and treat you as such. Sometimes, we have to fight for what we should get automatically. Sadly, there are a number of people in this position on this site.

    You possibly need to draw up a power of attorney for your husband. He cannot act on your behalf unless he has this. This is a form which allows him to act on your behalf and this becomes inactive as soon as you pass away. Even with a power of attorney, your husband may have to be able to produce this the first time he acts on your behalf with each individual organisation and may need to wait until this is scanned and sent off to head office. This can take a few days to process. After this has been done, it should be quite straightforward (again something your social worker can arrange).

    I have lymphoedema in both arms, so I can appreciate how concerned you are about the marks left on your arms. I am in the same position in that I need to have my blood pressure, injections, blood samples taken from my leg or foot. I have had this for 8 years, but my arms can get very sore at times. The main thing to look out for is increased swelling in your arm. The pressures of financial problems must be putting a tremendous strain on your relationship. This is not at all unusual. Still, I can understand that you do not want your marriage to fail as a result of this. The sooner you get this sorted out, the better you will both feel.

    There will be other services local to your own area. Do you have any general nurses visiting you at home or any carers coming in? A nurse might be able to steer you in the right direction for your local area, particularly if you stress how desperate both you and your husband have become and how urgently this needs to be sorted. She may also be able to arrange for a social worker to visit as may your GP.

    I hope that you are finding Gabapentin helpful with your pain. I had to stop taking it after developing side–effects last year, but I miss it for the pain.

    I am thinking of you Pepper and hope that you can resolve this problem soon. I look forward to seeing a post from you shortly, saying that you have found a solution.

    We are always here for you.

    Kind regards,

    Jolamine xx

  • Thank you Jolamine, you are very kind for your long response.

    Citizens Advice will only point us to the internet...I’ve spoken to my husband about debt consolidation etc but he is convinved that we do not need to do that, that the council will offer us adapted housing, that we will then selll this house and be able to,pay off the debts and mortgage. Age Concern won’t help as I am only 54 and too young.

     

    yes, my support worker promised us the moon, he knew everything. But when he finally turned up two months after he was supposed to the extent of his knowledge was to advise us to contact welfare rights. My husband did that and got an appointment for eight weeks ahead, the week before they rang and cancelled it and aoffered another one a further eight weeks ahead. Since then we have spoken to another welfare rights person who was put on to us by the support worker, but he would only advise on PIP, and his advice on that was to not rock the boat. I presently get standard care and high rate mobility, but that too two years to get. He advised that I could just as easily loose the lot as gain enhanced care.

    Yes I told the psychiatric nurse what I thought of her and she apologised, then made the next appointment 4 weeks ahead instead of 2.

    six months ago I would havegiven power of attorney to my husband without a second thought, now I’m not sure I feel safe doing that.

    my arm is painful this morning and there is a little swelling, I am hoping that will go down. I have asked that he gets support as a carer and he has agreed that he do3s need to do that, hopefullly that is a step in the right direction.

    I have a community matron come to visit me every few months and she is very kind but seems o ly to be able to do such as supply me with a hospital bed. I did try that but with my frequen falls I found I was falling onto the metal frame and footboard all the time rather than onto a soft mattress of a normal bed.

    the Gabapentin isn’t helping, but maybe I haven’t been on it long enough, only a couple of weeks, but my oncologist has made me a referral to a pain clinic - he is the one cancer person who seems to genuinely care.

  •  

     

    Hi Pepper,

    My worry is that you may find that your lenders foreclose on your loan before you have anything in place to prevent this. They might be able to take your house then, leaving you with no proceeds from it to pay off your debts and mortgage. This is why there is urgency in sorting this out.

    Some people feel that bankruptcy is an admission of failure. It can work against you if you want to start up another business, but I don’t expect that you’ll be doing this. Sometimes it is the best option to get everything settled and take the pressure off you both once and for all. I’m sure that, if you got some advice on debt consolidation, they would mention bankruptcy if things are as bad as you say.

    If you have not been on the Council waiting list for years, it is unlikely that you will get any sort of housing in the near future, let alone adapted housing. I understand that PIP has tightened up considerably in recent years and many people who previously had it have now lost it, or been relegated from enhanced to standard rate. I suspect that you should also be entitled to Carer’s Allowance, if your husband is looking after you.

    It is still early days for the Gabapentin to work, so don’t give up hope yet. I am glad that you have been referred to the pain clinic and I hope that you find it of some use. I personally didn’t because they kept mentioning pain every few minutes. My usual coping mechanism is to try and forget about it. However, these classes led on to mindfulness and gentle exercise classes, which were helpful.

    I am pretty sure that your arm will settle in a few days, so try not to worry about it. Do you have a Maggie’s centre or something similar in Derby? These centres offer free counselling for family members as well as cancer pilgrims. They also offer alternative therapies for both you and your husband. This might be a good way to reduce the stress for both of you.

    I am sorry that I cannot offer any other advice, but I hope that you can manage to sort it all out. I shall continue to look around on your behalf if that is ok with you. If I find out anything further, I will be back to you.

    Kind regards,

    Jolamine xx

  • Hi Jolamine,

    thanks for your concern. I’ve asked my husband to look at bankruptcy an option. The trouble is that he is convinced that with my medical record and supporting medical  letters regarding both my physical and mental state that we will be offered adapted housing as a matter of urgency. He then plans to sell out house to pay off the debts and mortgage. And I can’t get him to listen to the fact that I don’t think we will get offered housing.

    we don’t have a Maggie Centre, and I don’t seem to be able to find anything similar.

    please do continue to look around, I would be very grateful

     

    in the meantime could you direct me to the correct part of the forum to ask about reoccurrence rates? I had a 38mm Grade III invasive ductal carcinoma with no vascular invasion, but 21 lymph nodes were removed two of which contained metastatic disease. Oestrogen and progesterone receptor positive. HER-2 negative. NPI 5.76

    I don’t even know what much of that means!

  • Hi Pepper,

    The quickest way to have your diagnosis explained (it looks like alphabet soup to me) would be to ring the nurses this afternoon. They're available Monday to Friday 9am to 5pm on freephone 0808 800 4040.

    I volunteer with a disability charity in Warrington. I'm afraid one of the most common complaints in our area is the amount of time it takes to sort out adaptive accommodation. This is a major cause of NHS bed blocking - we're talking months not weeks in most cases. 

    At the very least you need to ask your mortgage provider for a payment holiday while you get sorted out, otherwise your mortgage debt will rise month on month and there is a real risk of eviction. 

    Our local MacMillan benefits advisor sorted out and fast tracked my PIP application. Once you have PIP (the fast track is for cancer patients only and needs to be via MacMillan) in place, this automatically qualifies you for other benefits. You may also be entitled to ESA - especially if you have no savings.

     

    Good luck

    Dave

  • Hi Dave,

    i get PIP, won at tribunal whilst in the middle of chemo, I was advised to continue with the application I already had in place rather than start an new application for changed circumstances.

    I got an appointment with the Macmillan financial advisor, less then five minutes into the appointment I got told to go look on the internet. End of my appointment.

    But I will ring the nurses on the number you give and see if they can explain more of what it means.

    thank you.