Robin and i do not live together on a daily basis.I live in yorkshire where all my family are,and Robin lives in Hampshire where his work is .Every two or three weeks we take turns to travel the 250 miles.The reasons for this are many and varied but we have been together for 15 years and married for twelve and on the whole it works for us.One day in November i woke up in the middle of the night and knew that he needed me.He had been telling me about this huge lump that had suddenly appeared on his neck,and i knew from his voice that he was worried.I had also seen the ulcer on his tongue and felt that it was a possible cause for concern.At 4.00am i got dressed packed my things and drove down to Hampshire to go to see our GP with him.As you all know,i never returned to Yorkshire and i think those of you who have folowed Robins progress know it has been a bumpy ride.!!!During the past four months i been here alone with Robin hopefully helping and supporting him through the horrific journey of Dx surgery and lastly Radiotherapy.
In four months i have missed Christmas and New Year with my family.My 72 year old Mother who lives alone and depends on me for her only regular company(i am with her every day). My two children .My granddaughter who was one month old when i left and my precious red headed tyrant Georgina who had her first Christmas while i was here and has now started to walk.These are things i can never get back and are gone forever,but i willingly sacrificed all that to stay with a man who i love unconditionally.Now Easter has come and gone and i spent it shut in the spare room alone,while Robin slept and struggled with the terrible effects of his radiotherapy. Yesterday the treatment finished and i thought i would feel elated and relieved,but when we got back home Robin turned to me and said "i am going to the pub are you coming" 24 hours before this he was lying on the sofa looking as if he wasnt going to make it and here he was full of morphine asking me if i was going to the pub with him!!!Needless to say i said no,but he went any way and i was so worried about him i followed him down there and sat till he decided he had made his point and then i brought him home.There were no words to be said last evening and i sat in my room thinking long and hard about all the people on this site who would gladly have his prognosis .This morning i carried out our normal routine of peg care ,medications and feeding and then he asked me why i was in such a bad mood.Where could i start.I just told him i felt he was letting down all the people who worked so hard for his recovery and cared so muchabout him.His answer was to go outside in the blazing sunshine and wash his car after telling me he would be back at work next week.I decided there and then that i was not going to stick around and watch him destroy himself and that it hadnt been worth all the things i have missed and all the family i had abandoned and all the pushing and fighting i had undertaken on his behalf over the last four months.An hour later he came in,and without a word of a lie i thought i was going to have to call an ambulance.He was soaked with sweat,shaking coughing and choking and collapsed.I got him comfortable creamed his skin gave him some morphine and settled him into bed where he has been ever since.When i fed him at 2 0'clock he barely woke up and just said he felt real bad and he looks it, and part of me is saying "it bloody well serves you right"
I have had a long conversation with Mum who said i musn't run out on him now because i will never forgive myself and would only sit at home worried sick but i feel so angry.Why does he think that 24 hours after finishing treatment he can just pick up his life and carry on as if none of this had happened.I am already missing the routine and support of going to the hospital every day,i dont know what to do.I have started smoking again after 6 years and my nerves are shot to bits.All i wanted was to get him through the next few days see the oncologist on Tuesday and get the go ahead to take him home to Yorkshire for a couple of weeks rest and recovery,am i a monster for feling this way?

Liz

By no means are you a monster, you have just been through what is probably the worst if not one of the owrst times of your life....How much can one endure with complete sanity ? You have missed so much ..Yet at the same time been such a compassionate and wonderful person who has given so much !! Anyone would be honored to have you by there side I know I would. And missing your normal life and the people in it..is "NORMAL". And it must have been so hard do ing it alone. The fact you wanna take him back to your home ...so you can have your support group is by no means HORRIBLE, it is more then understandable. And I think for Robin going to the pub...it was probably him showin himself that he isnt going to let this change him,,somtimes we all just have to do somthing to prove to oursleves that we are still that same person. And I wish for you and your health...that maybe you could quit smoking , I am sure that you well know what the possible consequences are ! LIz My heart and thoughts are with you ......I have been following your story with many tears and even some giggles....my heart and admiration are with you and I am sending you (((((HUGS))))) across the ocean !!

Love
Shar

Liz - I wish I could be there just to hold you and let you feel the compassion we have for you. You have been so strong in all of this and have shown the depth of your love for Robin in countless ways. There are so many changes in this cancer journey that we are faced with and have to adapt to. Just when you get used to one "routine" it ends and there is another one to get used to and accept or fight. I, too, felt very anxious and missed the routine of going to the hospital every day when my son's treatment ended. I missed the familiarity of the radiation waiting room, the people that were there to talk to, the very sweet "Cookie Lady" who offered cookies to everyone (when most didn't feel like a cookie) Of course any change in life - whether it is good or not so good brings a feeling of stress and loss - and we react in different ways just so we can survive and try to hang on to some semblance of "normal" and all the while grieving over what once was and searching for the "new normal". The very worst times for most of us are the three weeks post Tx. Try to hang in there just a little while and be good to yourself, too. Things will get better!

Hello Liz, I just wanted to send you a HUG and support. Shar and Ann-Marie have been through this. I have not. But I feel your pain, and their responses are logical. After 15 years, I know you both love each other. All relationships get strained. I'm not sure if this is a good idea or not. You must decide. I would print what you wrote and put it in a card that says "I love You". Us men have short memories sometimes.
You have just been through a TRUE TEST OF LOVE. And I give you an " A+ ". I think Robin is just trying to cope with all this. He is so lucky to have YOU!

Best Wishes, Petey

Liz - Anne Marie just said it all. I didn't find this website until my husband was through with his treatment. I know exactly how you feel - there were times when I just needed to talk to someone about HOW I FELT but my husband was so sick I didn't want him to feel any worse. Sure we all have our family support and love but unless they have been down this road, it is hard to explain. It does get better - our guys recover and I can say that our relationship is better (34 years of marriage). Now I have been able to tell him about my journey through his treatment. You might want to check with your hospital and see if they have a support group that you can join or one time I talked to the social worker and she was very helpful. Just know we are here for you - Take care, take deep breaths and it will get better. I'm coming to England in May for the Chelsea Flower Show! I had to postpone it last year due to THE BIG C - but I'm coming this year!

Marty

Liz, you are as much entitled to "cancer fatigue" as Robin is! It is pretty obvious that being away from your family has also put an additional amount of stress on you. Hope you can work it out to take Robin to Yorkshire with you for a while- if that doesn't work, try to go by yourself for some short visits. When you feel comfortable that he can manage - or take care of himself adequately- then you can reassess the situation. It does neither of you much good to be in a state of turmoil. You need to do some good things for yourself. Amy in the Ozarks

Thank you all so much.I needed to get that off my chest because it has been tearing me to pieces.A semblance of peace has decended on the house again,as robin is still obviously very ill ,(a fact proven by his going to bed in the afternoon yesterday for the first time in his whole 4 months of ill health)and has had to concede the dramatic gestures are not for this time in his recovery.
Shar you hit the nail right on the head with this observation
"And I think for Robin going to the pub...it was probably him showin himself that he isnt going to let this change him,,somtimes we all just have to do somthing to prove to oursleves that we are still that same person." I am an adult and should have seen that straight away and dealt with it ina more rational manner.
I understand that now i have seen the misery in his eyes as the realisation that no amount of sheer cussidness is going to enable him to do a lazarus and take up his bed and go back to work /the pub etc until his body is good and ready.
So bless all you dear people who have trodden this road before me ,and forgive my selfish wander off the path into self pity.
On a brighter note my son sent me a whole album of photographs of my youngest granddaughter Josie they are beautiful and i cant wait to get my hands on her

much love liz in the UK

Liz,
I feel so bad for you that your family is so splintered right now. It's tough enough to be a caregiver without having your own support network.

Most of us patients were pretty hard on our caregivers. I can empathize with Robin - I too thought I could beat the numbers of one month of recovery for each week of treatment and it just didn't happen. I was pretty much taking care of myself about 3 months out but still too weak to return to work. I can remember trying to maintain the landscaping and only being able to prune one shrub a day (I used to do the entire yard). It's really about energy management in the early stages of recovery. Robin learned a hard lesson today. This is also about the time that depression (normally) sets in.

You have every right to your resentments and feelings. Caregiving is not for the faint of heart and, if at all possible, find a support group for yourself where you can vent and also see that you are not alone. When I was caregiving for my father there were times that I resented the impacts it was having on my life and those feelings are pretty normal (according to my therapist).

Gary it is strange that you should mention depression because this morning i mentioned it to my Mum.The reason i am wondering is that from all the bluster of yesterday i now have a man lying in bed looking at me with pleading eyes yet saying nothing.I can only relate to a pet i once had who was gravely ill and just lay and looked at me with that "please mum make it better expression"(what and awful comparison!!!)Is depression after treatment a common thing?

Liz - My husband had a terrible time post radiation and chemo with depression. It took a village to get him to admit it and finally he broke down in front of his doc and was put on anti-depressants. It helped with his morale, his eating (he wasn't gaining weight) and his emotions. She explained that it wasn't a reflection against his manhood and that 75% of her patients suffered from depression post treatment(and the majority of that group were men). He is on anti-depressants (for 6 months) and they have helped immensely. He calls them his "crazy pills" - cancer humor! Those weeks post treatment are the worse so hang in there and if you think he needs help - call the docs.
As a side note, I am taking them as well. With his treatment, runnning our business, being available to 3 elderly parents (one with Alzheimers) and the normal day to day life, I was not doing too well. It didn't hit me until he started feeling better - I guess you run on adrenaline for so long and then WHAM! So, take care of you, too!

Marty