Unsympathetic partner

********

Dear Johnty

What a survivor you are! Leukaemia in adults is no mean feat. It is a grueling treatment,not to mention all the physical changes to your appearance- yes its temporary but it still takes a lot of bravery to walk out the door. I remember my son when he lost his hair and blown up on steroids telling me he wasnt handsome no more when he looked in a mirror it made me cry (as his mum i always think hes handsome). He was 3 at the time and even he was self conscious, cancer is hard- your doing a great job.

i hope your are through the intense period as it is just plain awful.

Thankyou for your understanding and kind words, i was at such a low ebb when i wrote that last week. Things are still hard but my partner and I have spoken and i know hes trying.

Im just dreading having my next procedure as i will most likely go through this 'aftercare' again and as you say men have a hard time accepting things and from what i have learned a short memory!!

I am finding my recovery this time increasingly frustrating im up and about but the smallest tasks leave me so tired. Patience is not my strong point.

Wish you well in your treatment and recovery stay strong

Much love xxx

*********

Hi Rhinestone Cats eye

I have a similar situation - I have been off work now for 3 months with my cancer, and my wife has just fallen apart with this diagnosis and treatment constantly been the focus of our lives.

She decided to stop work after the diagnosis and care for me, and that was the worst thing she could have done - she gets no reprieve from the cancer, treatment, or conversation about treatment.

There is no distraction of work, or other peoples conversation, socializing or friendship you get at work, or in a more social surrounding.

I told her after about 2 weeks that she wont be able to be a carer and a wife, now, I am married to my carer.. it is so sad to watch your partner disappear like that..

i feel. the same as you that my partner resents me for having the cancer and upsetting our future, even though we did not cause this, or ask for it, and definitely don't want it.

I know its frustrating for them, and its annoying to do stuff for others that are constantly ill, needy, or require assistance, but I do feel that a bit more patience or understanding is due, as they made the choice to love you, till death us do part - easy to say, not so easy to do...

Now, we are in separate rooms, as the doc said to avoid contact with me for the 3 days of treatment, and 72 hours after, which ends up being a week, and I now have pipes and ports and a colostomy bag hanging off me, so cant cuddle at night and what used to be a happy marriage is ended up as me living with my carer..

Hope you can work things out with hubby, before things get this far out of hand, so just stay aware of not letting it go too far.

Ah.. what you say fits with my experience so much. Sad to say my husband and I split up a year or so after my enucleation. I too have had several operations, one long one to remove the implant which like yours had to be cut out. They tried putting a fat graft in instead but it all disappeared very quickly. Thirty years on I have no implant and a sunken and not very attractive socket but it's clean and pain free and I'm used to how I look. I also had another surgery when the socket couldn't take a prosthesis. The lower lid bit had to be made deeper. It was crazy at the time but all in the past now.

My partner then was not helpful. I remember coming out of hospital after one op to have him tell me that he'd invited people round for a party. He had no understanding of how I might be feeling. I cancelled the party. When we split all our friends sided with him and ignored me.

Sorry I don't think I'm helping you here by adding my own domestic rant. You could try the OcuMel UK website which I just recently found myself. 

Hi,

Moorfields are waiting got me to heal  before we decide my next step. I have been offered fat injections or alternative implant. They think i reacted to the implant because id had proton beam only 4 weeks before the enucleation and the implant was put in too soon before the tissues had healed. 

They are confident i can have a prosthetic. How long did your fat injections work for if at all? 

I am very undecided as what way to go next. I really want to have another implant. But the thought of all the pain and mess if i have another reaction not to mention the possible surgery to remove It again scares me. Im lucky that i hsve movement in my lids they didnt think i would.

Its took a year and im no further along. I hate the way i look, sounds so vain but i had a nice face before this. I miss it. 

Johnty

Thankyou your compassion comes through in waves, i wish you well and hope your not in too much pain.

I am getting better all the time and (as predicted) things are better at home because i am getting better.

Lots of love

Xxx

Hi Dave 

I can see things from both sides i cared for my son for nearly 4 years (he had Leukaemia) and caring is all consuming. Its why my health was so bad because i was consumed with my boys welfare and and the rest of my family i forgot about myself.

However you have to concentrate on you, your health your well being, there is no need for guilt- no one ever asks for cancer. Its funny how it effects everything not just physical, but mental and emotional as well. Your wife im sure understands and she sounds like she is looking after you.

Things are better because im improving, to say my partner is my carer would just be a lie, if i was in your situation id dread to think what state i would be in, As my partner can not tolerate my being ill. 

Its a stressful time, when we went through it with my son it brought us closer together, this time we are really being tested.

Im confident we will get through,

i wish you well lots of love xxx

Heya,

I'm sorry to hear you are going through so much. I had proton beam in Jan so I've no idea if it is working or not yet but I am finding it very hard to get my energy levels back up. My partner has been concentrating on just getting to work to support us as I had to leave teaching two years ago because of the stress and he has not been right since a brain tumour three years ago. But I empathise with the lack of support you are feeling even though the situations are different. I don't feel supported or cared for, like I have to get better so I can go back to being the carer rather than him recognising we will have to support each other. And I feel real pressure to get back to the self-employed business I was developing before my diagnosis so we can have some more money coming in but it is hard adjusting to the eye patch that allows me to see clearly and I am so low emotionally and physically drained that just doing the housework and trying to care for my partner and son feels like enough.

I read your update that things are improving and I am glad but it isn't fair that it takes you making yourself ok to get the relationship to work. You deserve support and caring.

I hope things continue to improve xxx

I didn't have fat injections, maybe that works better. I had a strip of tissue taken from my hip, rolled up into a ball and stitched in place. It didn't last long at all but it's really difficult to remember time scales. I hate the way I look too but the thought of more surgery is worse.