One diagnosis after another

I’m so sorry to hear about this avalanche of diagnoses which have landed on you both. I can only answer from the polycythemia rubra vera point of view. I had this diagnosed 7 years ago and, although initially terrified, I’ve found it’s absolutely no problem. I take a chemo tablet each day plus a small aspirin, my blood is checked every 8 weeks. If the count goes up, they either up my tablets or try and persuade me to have a venesection. I avoid those if I can. I’ve been told if you have to have a cancer, it’s not a bad one to have. I believe some people can be regulated just by venesection alone which would be ok. I was told to be so careful having a drink, sunbathing etc but I just run my life as normal now. I hope it all works out as he’s so comparatively young.

Hi new
First of all let me say how sorry I am that this is happening in your family.

I am sure it is all very shocking and you must keep that mind and be gentle with yourself.

Lastly it can often be quite difficult to be the care giver, sometimes an even harder task than the patient. Being aware of this helps you make plans to look after yourself.
Hope this is of some help to you.
Dawn.

newnanny, I am so sorry to hear about your DH. I have no experience or advice to offer on the specifics of your DH's problems, but his situation with multiple problems is one which my own DH has had to face. I understand, therefore, just how much of a shock it must be for you both to be coping with all this.

Ten months ago, DH was fit and felt healthy, though he was becoming aware of some problems. He was diagnosed with bowel cancer, underwent surgery, recovered, developed complications, so had to have more major surgery, started to recover again but developed even worse complications, recovered from those sufficiently to be allowed to start chemotherapy which was interrupted several times for minor infections, and then a serious infection lodged in his spine seriously impacting on his mobility as well as hospitalising him again for several weeks. He is now recovering again but has a high blood calcium for which there seems to be no explanation. Because of all his issues, he is under the care of consultants in four different specialties.

From an emotional point of view, it has taken a huge amount of resilience and determination from DH to get through this and I think he has found the love and support of his family to be very important.

From a practical point of view, we have found it very important to keep well-informed on likely causes of his problems, investigations, treatment options etc., not least because he has seen so very many health professionals who don't always have time to be well informed on the other issues DH has which are not the ones being currently dealt with. I cannot fault the care he has received from the NHS, but the one fault with the system, is sometimes a lack of joined-up thinking.

I am sure that your DH too will have excellent care, but it does no harm to actively work with the medics to ensure the dots are all joined up. I am sure too, that your DH will get through this, and that you will both be able to find the emotional strength to cope. I understand how hard it is for you too. Your life and your plans and expectations have been changed as well as his, yet you feel you have to be strong for him. Let family support you too. Let your defences come down sometimes and have a cry if you need it. Thinking of you.

Very brave man, your DH and you. Now that they have identified the tumour, they will be on to it fast enough. The other conditions will also be identified and treated. Put your faith in our wonderful NHS

Thankfully he has never smoked and very rarely drinks. He is a vegetarian and eats well but is overweight. Now he is too exhausted to even walk the dogs so I either go alone with them now and dc help out with dogs. Dh is miserable though because he cannot drive now because of brain tumour. He hates me driving him all of the time. He used to like working in garden and DIY but is now sleeping a lot of time. We are feeling a bit sorry for ourselves tonight as have been sent another hospital appointment in middle of our hols but we have discussed and will come home two weeks early as too afraid to miss appointment.

It's possible that by treating the Addisons your dh may start to feel a lot better. I do hope so.

You've had an awful lot suddenly land on your plate so it's not surprising you're overwhelmed. I'd leave the topic of retirement on the back burner for now and concentrate on the operation. Retirement can be considered later on, you/he don't need to decide on that right now so park it for the time being.

Hope all goes well with the op.

newnanny. This is a lot to happen all at once. Whilst there is a great deal to think about both health wise and financially, perhaps take things a step at a time. For example, prepare for the operation by helping your husband to be as healthy as possible (iyswim) by not having smoked, be as healthy a weight as possible and taking exercise, eating really well and only drinking very moderately. Actually I am quite sure you know all this and more but it is sometimes difficult to see clearly when you are both so upset and worried. I expect the practice nurse or gp might sit down and help you with the best way forward. I have found that a pharmacist can give great advice on the best way to take medication - not always best explained on the packet. While you might prefer your husband to take more time off work, it sounds as if he prefers to be busy. Line up some things to keep him occupied during his recuperation so that he does not rush back to work too soon. Please look after yourself too. I hope you have special people in your life to support you as well as coming on here. I hope I have said anything to upset you. My best wishes to you both.

I am heartened to learn that he works in the public sector newnanny and not the private sector where things may have been very bleak indeed.

I do hope that he is able to take full advantage of whatever there is on offer to him . Early retirement , extended sickness, working from home etc. And I wish you both the very best of luck. x

I’m saddened that you’ve had so few replies newnanny this is a dreadful situation. I hope you have family and friends you can turn to for support x

He works in the public sector and does have a reasonable private pension. His employers have been really great about it all. He took two weeks off when first diagnosed with tumour, with the first week in hospital. Now he is back to working almost full hours but allowed to work from home a couple of days each week which is good as it means he does not have to travel which is tiring for him. I am not sure how much his pension would be actuary reduced if he retired at 57, which would be 3 years early for old pension and 10 years early for new pension. His original public sector pension could be paid at 60 but they changed the pensions a few years ago and what was in old pension was frozen there but can be paid at 60, then he had to start paying into new pension and that is supposed to pay out at 67 but as I say not sure how much reduced they would be. I think it is Addison's making him so tired but now diagnosed and he has some tablets to take every day for it I am hoping he will be less exhausted. First day of tablets today so too early to tell. He will also get state pension at 67. We also have some income from buy2let houses so I think we could manage as I will get my private pension in a little over 2 years time but can't get state pension for a little over 9 years. Doodle does your dh have to have his blood taken out regularly? I just want him to retire early as I am worried he will get hardly any time to enjoy retirement as life expectancy now lowered a lot. After operation he is expecting to be off work for 5 to 7 weeks and will be on full pay. He is a bit of a workaholic and will want to return as soon as he can. I am expecting him to start off working from home and sending work in electronically. I wanted him to take another week after diagnosis of brain tumour but he insisted on going straight back to work as he enjoys his job so much. I would rather he retired early and we made do with less money but he is stubborn. He is a man!

newnanny what a shock for you and DH. Try to look on it as positive that these things have been discovered and therefore treatment can be given. My DH has polycythemia Vera which is similar to your DH. He is now on tablets to try and regulate his blood levels. My DH gets more tired too but has been told that isn’t due to the PCV or the medication. If your DH is so exhausted, perhaps he should talk to his GP to see if there is anything that can be done and also to ask GP if there would be grounds for early retirement due to ill health. I do hope the operation goes well and he makes a good recovery.

Oh how my heart goes out to you and your DH newnanny, poor man has so much to cope with and all diagnosed in such a short space of time. It's not fair.

I'm not sure about retiring on medical grounds and considering he is only 54 (I am 57 and have to work another 10 years before I can retire) he still has a long way to go before he can retire normally, unless he has a good private pension of course. I think you/he needs to look into this as a matter of urgency as he is not going to be able to keep working full time like this for much longer is he? Will he be able to go on long term sick after his operation? Does he work in the public sector or private? I suppose all this will make a difference. I wish you the very best of luck and do get some professional advice asap x

pressed too soon. He is having operation for brain toumour in September and will be off work for approximately 6-7 weeks.