› Forums › General Melanoma Community › Coping with chronic illness
- This topic has 27 replies, 6 voices, and was last updated 7 years, 7 months ago by
MoiraM.
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- September 3, 2016 at 9:27 pm
This is mostly me venting. As will be clear from the vent, I cannot speak my mind at the moment to my husband. Also, the friend I had chosen to be my 'buddy' to talk to has developend breast cancer and is in the middle of chemotherapy.
I know I am by far not the worst off person here. I have a trio of related issues.
(1) I have 'unresectable' stage 3C melanoma, which responded to Ipi/Yervoy. I have been told if the melanoma does not begin progressing again within 3 years then it probably won't progress for 10. I am only at 1 year 3 months. I had by latest CT scan a week ago and I see the melanoma team next week.
(2) The Ipi took out my anterior piuitary gland. It almost certainly permanent. I take replacement thyroxine and prenidolone to replace the missing cortisol. I have spent a year trying to get the dosage low enough to satisfy my doctors and finally refused to cut my predniolone dose any more. I tire easily. My tolerance for stress has vanished. My gut had not been the same since my second infusion of Ipi.
(3) I am 'morbidly' phobic of doctors and hospitals. I went through CAT (cognitive analysis therapy) and EMDR (eye movement desensitization and reprocessing) to try to reduce the phobia to the level where I can have treatment. I was reluctant to agree to therapy. It has changed my emotional responses, which my psychologist thought was a good thing but I am not comfortable with it.
My job, which was very, very important to me, is no longer enjoyable. I already only work part time. Because I tire easily and have less capacity for stress, I have had to modify what I do at work. Much of what I enjoyed has gone. What is left is a series of difficult to resolve problems I can tackle from the office while I watch other people do what I used to love doing. To be honest, they do not do it as well as I did.
I took 6 weeks' leave over the summer. I continued working to get the dosages of the replacement hormones right. I tried to get fitter. I found a new psychologist (paying this time, the previous ones were paid for by the NHS – I am in the UK).
I had a great time. I felt much better.
I have been back at work for two days and it could be seven weeks ago. I am tired, stressed and unhappy.
My new psychologist encouraged me to follow up the possibility of giving up work.
In my heart I always believe that we could afford it if I wanted to give up work. My husband would be fine with it. I would lose my life insurance (yes, I have checked) and my pension would be damaged badly (there again, will I need it?), but surely day-to-day quality of life is paramount.
Well today I bit the bullet and analysed our finances.
It was a nasty shock. I had not realised how expensive being unwell had been. Over the past 12 months, we not only have spent every penny we earn but another £8500. That wasn't a problem, we had the savings to cover it, but if I give up work we will have to cut out 35% of our current expenditure.
So I am sitting here imagining what it would be like. We are not a high-spending couple. We don't drink. We don't go on holidays. We only have one car between us. We would have to watch every penny.
My husband has always been the one who worries about money. Now he is saying things like 'We'll cope, I want you to be happier." when I know the prospect horrifies him.
It horrifies me.
So the idea of analysing our finances to open up the possibility of me leaving work has backfired badly.
I know I am not too ill to work. I can carry on. They will not fire me. I will continue to be paid for doing the least enjoyable parts of my old job to a lower standard than I am comfortable with. I will feel conpletely drained every work day and, usually, for one other day for every working day.
One of my friends is chronically ill. He just shrugs and says that's what it is like.
If I had the energy, I would find a large cardboard box and kick it to smithereens.
Vent over.
- Replies
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- September 4, 2016 at 8:31 am
Oh Moira what a difficult time. It seems surviving melanoma is just hte start of many battles. It's easy for healthy people to forget just how life-altering chronic illness is – even for the 'lucky ones' with cancers that can respond to treatment. I don't have advice, but I do have plenty of hugs and sympathy. Hope you feel better soon and that the financial situation rights itself. Have you talked to an adviser about what you can do? Do you have any entitlements under disability or similar? It's just worth knowing all of your options – even fact finding can give you some feeling of control.
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- September 4, 2016 at 8:31 am
Oh Moira what a difficult time. It seems surviving melanoma is just hte start of many battles. It's easy for healthy people to forget just how life-altering chronic illness is – even for the 'lucky ones' with cancers that can respond to treatment. I don't have advice, but I do have plenty of hugs and sympathy. Hope you feel better soon and that the financial situation rights itself. Have you talked to an adviser about what you can do? Do you have any entitlements under disability or similar? It's just worth knowing all of your options – even fact finding can give you some feeling of control.
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- September 4, 2016 at 8:31 am
Oh Moira what a difficult time. It seems surviving melanoma is just hte start of many battles. It's easy for healthy people to forget just how life-altering chronic illness is – even for the 'lucky ones' with cancers that can respond to treatment. I don't have advice, but I do have plenty of hugs and sympathy. Hope you feel better soon and that the financial situation rights itself. Have you talked to an adviser about what you can do? Do you have any entitlements under disability or similar? It's just worth knowing all of your options – even fact finding can give you some feeling of control.
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- September 4, 2016 at 9:44 am
Thank you for the hugs and sympathy. I appreciate it.
I would never qualitfy for disability – the new rules are tough and even very unwell people do not qualify.
It'll be fine. I just need to get my head around it and start seeing it all from a more postive viewpoint.
I know the certainty about the future I felt before I was ill was not real but it felt like it was!
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- September 8, 2016 at 3:32 am
Dear Moira
would like to thank you for the advice and support you have given me and others on this board
wish i knew how best to help you. I am an economist so tend to be careful about money and about giving up jobs, especially if this would mean losing beneifts like life insurance and perhaps pension. How many more years do you have to go before retirement?
are there any plus sides to doing your job and good things – maybe you can try to work more on these than the dull or bureaucratic stuff?
would taking more steroids help – these gave me lots of energy – but are the side effects problematic?
before making a choice that is difficult to reverse, are there things you can do to make work more interesting and manageable (you have already done this by shifting to part time), or on the medical side, to give you more energy?
i would not rush into decisions, but continue to talk with your pyschologist and friends you can trust and understand you. For me my job provides lots of security and work is interesting (save for terrible meetings and bureaucratic stuff) although was more interesting before
hope your results are good and good luck too
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- September 8, 2016 at 3:32 am
Dear Moira
would like to thank you for the advice and support you have given me and others on this board
wish i knew how best to help you. I am an economist so tend to be careful about money and about giving up jobs, especially if this would mean losing beneifts like life insurance and perhaps pension. How many more years do you have to go before retirement?
are there any plus sides to doing your job and good things – maybe you can try to work more on these than the dull or bureaucratic stuff?
would taking more steroids help – these gave me lots of energy – but are the side effects problematic?
before making a choice that is difficult to reverse, are there things you can do to make work more interesting and manageable (you have already done this by shifting to part time), or on the medical side, to give you more energy?
i would not rush into decisions, but continue to talk with your pyschologist and friends you can trust and understand you. For me my job provides lots of security and work is interesting (save for terrible meetings and bureaucratic stuff) although was more interesting before
hope your results are good and good luck too
-
- September 8, 2016 at 6:39 am
Thank you so much for your kind words and sound advice.
I have started asking better questions of both my doctors and my superiors/colleagues at work.
I saw my melanoma consultant yesterday. My scans are still clear – she actually used the words'no evidence of disease' and 'complete responder', which was awesome.
One more step towards the three year milestone.
She suggested I took 10 mg/day prenisolone when I was going to be doing something more stressful. My husband then pointed out that even if I took 10 mg/day prednisolone every work day, it would be only be three out of seven days for 38 weeks of the year or one-third of days.
I am going to take this to my endocrinologist next week.
At work, I am going to insist on a written plan. At the moment, everything is verbal. For example, when the review season rolls around, I am told that I have not achieved the objectives but it is understandable, It would be better to have more achieveable objectives!
-
- September 8, 2016 at 6:39 am
Thank you so much for your kind words and sound advice.
I have started asking better questions of both my doctors and my superiors/colleagues at work.
I saw my melanoma consultant yesterday. My scans are still clear – she actually used the words'no evidence of disease' and 'complete responder', which was awesome.
One more step towards the three year milestone.
She suggested I took 10 mg/day prenisolone when I was going to be doing something more stressful. My husband then pointed out that even if I took 10 mg/day prednisolone every work day, it would be only be three out of seven days for 38 weeks of the year or one-third of days.
I am going to take this to my endocrinologist next week.
At work, I am going to insist on a written plan. At the moment, everything is verbal. For example, when the review season rolls around, I am told that I have not achieved the objectives but it is understandable, It would be better to have more achieveable objectives!
-
- September 8, 2016 at 6:39 am
Thank you so much for your kind words and sound advice.
I have started asking better questions of both my doctors and my superiors/colleagues at work.
I saw my melanoma consultant yesterday. My scans are still clear – she actually used the words'no evidence of disease' and 'complete responder', which was awesome.
One more step towards the three year milestone.
She suggested I took 10 mg/day prenisolone when I was going to be doing something more stressful. My husband then pointed out that even if I took 10 mg/day prednisolone every work day, it would be only be three out of seven days for 38 weeks of the year or one-third of days.
I am going to take this to my endocrinologist next week.
At work, I am going to insist on a written plan. At the moment, everything is verbal. For example, when the review season rolls around, I am told that I have not achieved the objectives but it is understandable, It would be better to have more achieveable objectives!
-
- September 8, 2016 at 3:32 am
Dear Moira
would like to thank you for the advice and support you have given me and others on this board
wish i knew how best to help you. I am an economist so tend to be careful about money and about giving up jobs, especially if this would mean losing beneifts like life insurance and perhaps pension. How many more years do you have to go before retirement?
are there any plus sides to doing your job and good things – maybe you can try to work more on these than the dull or bureaucratic stuff?
would taking more steroids help – these gave me lots of energy – but are the side effects problematic?
before making a choice that is difficult to reverse, are there things you can do to make work more interesting and manageable (you have already done this by shifting to part time), or on the medical side, to give you more energy?
i would not rush into decisions, but continue to talk with your pyschologist and friends you can trust and understand you. For me my job provides lots of security and work is interesting (save for terrible meetings and bureaucratic stuff) although was more interesting before
hope your results are good and good luck too
-
- September 4, 2016 at 9:44 am
Thank you for the hugs and sympathy. I appreciate it.
I would never qualitfy for disability – the new rules are tough and even very unwell people do not qualify.
It'll be fine. I just need to get my head around it and start seeing it all from a more postive viewpoint.
I know the certainty about the future I felt before I was ill was not real but it felt like it was!
-
- September 4, 2016 at 9:44 am
Thank you for the hugs and sympathy. I appreciate it.
I would never qualitfy for disability – the new rules are tough and even very unwell people do not qualify.
It'll be fine. I just need to get my head around it and start seeing it all from a more postive viewpoint.
I know the certainty about the future I felt before I was ill was not real but it felt like it was!
-
- September 5, 2016 at 11:29 am
Hi Moira,
Also in the UK – stage III- struggling with probable drug related side effects-pain and immobility ( on pembro via trial ) and lymphoedema leg as well. Its not a great place to be.
Was wondering if you could may be approach your employer to consider a career break / sabatical for say 12 months. It would keep you in employment/ keep your life insurance via pension/ and would give you space for recovery, Plus if you started say October- you would have full tax allowances against half a years income for this year and when you go back ?
Would your employer consider enhanced early retirement on health grounds- unlikely- but might be worth asking ?
Have you still got a mortgage to pay ? Was told by the nurse specialist at the diagnosis meeting that it might be worth enquiring if the life insurance element would pay it off on the basis of the diagnosis- but this did not apply to me.. but would be something I had not thought of.
Might also be worth talking to one of the Macmillan advisers about options. They may be useful as a sounding board and to cross check your understanding of what help might be available/ or not as they deal with the system everyday.
It also sounds like your replacement hormone levels might be better controlled- with you chronic fatigue etc. Have you got an endocrinologist keeping tabs on this ? Even the timing of taking the daily doses can makea difference ?
Hope the Ct scan results go well. Can't offer much more than possible options to chase- but what you are saying resonates- even with a good result from treatment. there are permanent downsides which can be really difficult to cope with.
Best wishes
Deb
-
- September 5, 2016 at 12:52 pm
Thank you for your reply. It engendered many thoughts and here's hoping that one of them develops a new approach.
The trouble with a career break is that my organisation is very small, it is financially on the edge and I am very senior. If they are not legally required to be flexible, I do not think they will be.
I would ask HR but, guess what, we are too small to have an HR department.
I am looking into the pension side of things. Again, the organisation is unlikely to be flexible.
I looked up prenisolone again and found a new fact I had not internatised. Aparently some prednisolone gets eliminated from the body without ever being converted to the active form.
Maybe I should consider trying hydrocortisone.
Thanks again.
-
- September 5, 2016 at 3:17 pm
Hi Moira!
After two infusions, Yervoy caused my pituitary gland to stop making cortisol. I was treated with hydrocortisone…I think. I'm going to dig through my records, but I'm almost positive that is what worked for me. I don't recall it bothering me all that much. Eventually my pituitary gland recovered.
I was a teacher and retired early. (I'm Stage IV and a Keytruda responder with the exception of one nodule. Tomorrow I'll find out if it has increased in size or hopefully gotten smaller.) I don't really have advice, but I sure do have empathy and sympathy for you. I don't like being retired but a tumor in my brain and spine qualified me for disability. I'm not well enough to be the teacher that children deserve but I can volunteer.
I hope that you find some solution. In the meantime, possibly your doctor could switch your treatment.
Vent any time you want! It's good for you!!!! And we know how you feel.
All my best,
Terrie
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- September 5, 2016 at 3:17 pm
Hi Moira!
After two infusions, Yervoy caused my pituitary gland to stop making cortisol. I was treated with hydrocortisone…I think. I'm going to dig through my records, but I'm almost positive that is what worked for me. I don't recall it bothering me all that much. Eventually my pituitary gland recovered.
I was a teacher and retired early. (I'm Stage IV and a Keytruda responder with the exception of one nodule. Tomorrow I'll find out if it has increased in size or hopefully gotten smaller.) I don't really have advice, but I sure do have empathy and sympathy for you. I don't like being retired but a tumor in my brain and spine qualified me for disability. I'm not well enough to be the teacher that children deserve but I can volunteer.
I hope that you find some solution. In the meantime, possibly your doctor could switch your treatment.
Vent any time you want! It's good for you!!!! And we know how you feel.
All my best,
Terrie
-
- September 5, 2016 at 3:17 pm
Hi Moira!
After two infusions, Yervoy caused my pituitary gland to stop making cortisol. I was treated with hydrocortisone…I think. I'm going to dig through my records, but I'm almost positive that is what worked for me. I don't recall it bothering me all that much. Eventually my pituitary gland recovered.
I was a teacher and retired early. (I'm Stage IV and a Keytruda responder with the exception of one nodule. Tomorrow I'll find out if it has increased in size or hopefully gotten smaller.) I don't really have advice, but I sure do have empathy and sympathy for you. I don't like being retired but a tumor in my brain and spine qualified me for disability. I'm not well enough to be the teacher that children deserve but I can volunteer.
I hope that you find some solution. In the meantime, possibly your doctor could switch your treatment.
Vent any time you want! It's good for you!!!! And we know how you feel.
All my best,
Terrie
-
- September 5, 2016 at 4:28 pm
Hi Terrie
Thank you for responding. I wish you alll the best with your scan results. I get my latest CT scan results on Wednesday.
I was a teacher (secondary so 11-18 year olds). I know I could never do that job feeling as I do now! My current job is with a national education charity in the UK. Mostly I try to teach teachers, most of whom don't have time to listen because the last-but-one Scecretary of Education changed every examined course in the whole national curriculum!
I am afraid my anterior pituitary gland was damaged permanently. Everyone agrees that it will never recover and, even if it does, my adrenal cortex (the bit that makes the cortisol) will have given up working by then.
Oh well, the Ipi that did the damage shrank my tumours.
Yes. I am going to see my endocrine consultant a week on Friday.I shall ask her about changing to hydrocortisone or there is this other drug, plenadren.
The responses on this board have really helped.
-
- September 5, 2016 at 4:28 pm
Hi Terrie
Thank you for responding. I wish you alll the best with your scan results. I get my latest CT scan results on Wednesday.
I was a teacher (secondary so 11-18 year olds). I know I could never do that job feeling as I do now! My current job is with a national education charity in the UK. Mostly I try to teach teachers, most of whom don't have time to listen because the last-but-one Scecretary of Education changed every examined course in the whole national curriculum!
I am afraid my anterior pituitary gland was damaged permanently. Everyone agrees that it will never recover and, even if it does, my adrenal cortex (the bit that makes the cortisol) will have given up working by then.
Oh well, the Ipi that did the damage shrank my tumours.
Yes. I am going to see my endocrine consultant a week on Friday.I shall ask her about changing to hydrocortisone or there is this other drug, plenadren.
The responses on this board have really helped.
-
- September 5, 2016 at 4:28 pm
Hi Terrie
Thank you for responding. I wish you alll the best with your scan results. I get my latest CT scan results on Wednesday.
I was a teacher (secondary so 11-18 year olds). I know I could never do that job feeling as I do now! My current job is with a national education charity in the UK. Mostly I try to teach teachers, most of whom don't have time to listen because the last-but-one Scecretary of Education changed every examined course in the whole national curriculum!
I am afraid my anterior pituitary gland was damaged permanently. Everyone agrees that it will never recover and, even if it does, my adrenal cortex (the bit that makes the cortisol) will have given up working by then.
Oh well, the Ipi that did the damage shrank my tumours.
Yes. I am going to see my endocrine consultant a week on Friday.I shall ask her about changing to hydrocortisone or there is this other drug, plenadren.
The responses on this board have really helped.
-
- September 5, 2016 at 12:52 pm
Thank you for your reply. It engendered many thoughts and here's hoping that one of them develops a new approach.
The trouble with a career break is that my organisation is very small, it is financially on the edge and I am very senior. If they are not legally required to be flexible, I do not think they will be.
I would ask HR but, guess what, we are too small to have an HR department.
I am looking into the pension side of things. Again, the organisation is unlikely to be flexible.
I looked up prenisolone again and found a new fact I had not internatised. Aparently some prednisolone gets eliminated from the body without ever being converted to the active form.
Maybe I should consider trying hydrocortisone.
Thanks again.
-
- September 5, 2016 at 12:52 pm
Thank you for your reply. It engendered many thoughts and here's hoping that one of them develops a new approach.
The trouble with a career break is that my organisation is very small, it is financially on the edge and I am very senior. If they are not legally required to be flexible, I do not think they will be.
I would ask HR but, guess what, we are too small to have an HR department.
I am looking into the pension side of things. Again, the organisation is unlikely to be flexible.
I looked up prenisolone again and found a new fact I had not internatised. Aparently some prednisolone gets eliminated from the body without ever being converted to the active form.
Maybe I should consider trying hydrocortisone.
Thanks again.
-
- September 5, 2016 at 11:29 am
Hi Moira,
Also in the UK – stage III- struggling with probable drug related side effects-pain and immobility ( on pembro via trial ) and lymphoedema leg as well. Its not a great place to be.
Was wondering if you could may be approach your employer to consider a career break / sabatical for say 12 months. It would keep you in employment/ keep your life insurance via pension/ and would give you space for recovery, Plus if you started say October- you would have full tax allowances against half a years income for this year and when you go back ?
Would your employer consider enhanced early retirement on health grounds- unlikely- but might be worth asking ?
Have you still got a mortgage to pay ? Was told by the nurse specialist at the diagnosis meeting that it might be worth enquiring if the life insurance element would pay it off on the basis of the diagnosis- but this did not apply to me.. but would be something I had not thought of.
Might also be worth talking to one of the Macmillan advisers about options. They may be useful as a sounding board and to cross check your understanding of what help might be available/ or not as they deal with the system everyday.
It also sounds like your replacement hormone levels might be better controlled- with you chronic fatigue etc. Have you got an endocrinologist keeping tabs on this ? Even the timing of taking the daily doses can makea difference ?
Hope the Ct scan results go well. Can't offer much more than possible options to chase- but what you are saying resonates- even with a good result from treatment. there are permanent downsides which can be really difficult to cope with.
Best wishes
Deb
-
- September 5, 2016 at 11:29 am
Hi Moira,
Also in the UK – stage III- struggling with probable drug related side effects-pain and immobility ( on pembro via trial ) and lymphoedema leg as well. Its not a great place to be.
Was wondering if you could may be approach your employer to consider a career break / sabatical for say 12 months. It would keep you in employment/ keep your life insurance via pension/ and would give you space for recovery, Plus if you started say October- you would have full tax allowances against half a years income for this year and when you go back ?
Would your employer consider enhanced early retirement on health grounds- unlikely- but might be worth asking ?
Have you still got a mortgage to pay ? Was told by the nurse specialist at the diagnosis meeting that it might be worth enquiring if the life insurance element would pay it off on the basis of the diagnosis- but this did not apply to me.. but would be something I had not thought of.
Might also be worth talking to one of the Macmillan advisers about options. They may be useful as a sounding board and to cross check your understanding of what help might be available/ or not as they deal with the system everyday.
It also sounds like your replacement hormone levels might be better controlled- with you chronic fatigue etc. Have you got an endocrinologist keeping tabs on this ? Even the timing of taking the daily doses can makea difference ?
Hope the Ct scan results go well. Can't offer much more than possible options to chase- but what you are saying resonates- even with a good result from treatment. there are permanent downsides which can be really difficult to cope with.
Best wishes
Deb
-
- September 6, 2016 at 8:00 am
My boyfriend who’s been on pd1 for 3 1/2 years also has to take cortisol replacement as his adrenal glands stopped working. He also has issues with getting fatigued when he’s stressed. It’s all trial and error when finding the right dose. And I will say there’s just certain things he knows not to do now to not stress the body and go into adrenal fatigue. It’s all about accepting your new normal and learning to live the best you can with what you have i guess. Best wishes for you to get that under control. Also noted that he cannot work as it’s just too stressful and tiring. -
- September 6, 2016 at 8:00 am
My boyfriend who’s been on pd1 for 3 1/2 years also has to take cortisol replacement as his adrenal glands stopped working. He also has issues with getting fatigued when he’s stressed. It’s all trial and error when finding the right dose. And I will say there’s just certain things he knows not to do now to not stress the body and go into adrenal fatigue. It’s all about accepting your new normal and learning to live the best you can with what you have i guess. Best wishes for you to get that under control. Also noted that he cannot work as it’s just too stressful and tiring. -
- September 6, 2016 at 8:00 am
My boyfriend who’s been on pd1 for 3 1/2 years also has to take cortisol replacement as his adrenal glands stopped working. He also has issues with getting fatigued when he’s stressed. It’s all trial and error when finding the right dose. And I will say there’s just certain things he knows not to do now to not stress the body and go into adrenal fatigue. It’s all about accepting your new normal and learning to live the best you can with what you have i guess. Best wishes for you to get that under control. Also noted that he cannot work as it’s just too stressful and tiring.
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