Pituitary News, Issue 23 - Spring 2002.

Many carers welcome the support provided by contact with their local support group. Here two carers tell their stories, they talk about their husbands' symptoms and treatment, and say what their local support group means to them.

M's story

M from the North & West Yorkshire Support Group writes:

My story highlights that there is light at the end of the tunnel.

My husband's pituitary problem was highlighted in two ways. First when he visited his optician and was advised to see his doctor and second a week later when he awoke in the middle of the night with an enormous headache! He took painkillers and said he would come home from work if it didn't improve! I couldn't believe he was going to work. He was just coming up to retirement age and could count on one hand the number of sick days he had taken. I suggested a trip to the surgery to get his blood pressure checked as he was looking 'flushed'. The doctor was summoned and we were told to go to Accident and Emergency immediately where we stayed all day undergoing various tests. In the afternoon the doctor told us that my husband had a brain tumour. We were so shocked, we certainly didn't expect this.

We went through two long agonising weeks of not knowing what to expect before he had the operation to remove the tumour (which we now know was not a tumour on the brain and should not have been described as such). This period was not an easy time for my husband, there were complications and I think he was very brave to endure what he did the way he did. Eventually he was allowed home and needed a lot of nursing care. I was so fortunate that although I worked full-time my employer very kindly granted me compassionate leave to look after him.

It was the love, kindness and caring thoughts of relations and friends that helped us through that traumatic time. Our families live in the South but they travelled to Leeds to be with us which certainly lifted both of us. The 'Get Well' cards, the flowers, the visitors and the telephone calls were greatly appreciated and certainly helped when we were feeling down.

Being the Carer was a lonely time for me. On the one hand I had to give the impression I felt confident, look happy, be patient etc. whereas on the other hand I really felt I needed help to cope, I needed reassurance and somebody to talk to. But who?

One evening when I was at my wits end I remembered I had scribbled down the number of a 'support group' from the noticeboard in the clinic. After ringing I felt reassured and we started attending meetings, which we found interesting and helpful and have now become committee members. In fact my husband has been Treasurer for the past two years. It is encouraging to talk to people who know how you feel or who are facing similar problems.

Life is so much better now (my husband didn't retire - he works part time to keep his brain active!) We know so much more about pituitary problems through The Pituitary Foundation and our Support Group. It is very rewarding to be able to reassure others who like me were desperate for help 3 years ago.

H's story

H from the Cambridge group writes:

October 2000 my husband, J, had a blood test for a hormone imbalance. The doctor had written 'signs of Acromegaly', we didn't worry unduly, at worst it would mean medication for life we thought. However a few days later I noticed a large medical book in a local shop and looked up acromegaly. The words brain, tumour and surgery seemed to jump off the page at me. I knew then that J's result would be bad. His ring was seven full sizes larger than the largest generally made, we had his shirts made as his neck was so large, buying shoes was a nightmare, and his snoring and apnoea had forced me into the spare room.

Somehow I kept my newfound knowledge to myself, until I found out more, then I had to tell J. Not easy, but best to come from me I thought. He seemed very calm, it was me who shed the tears.

Since then the postman has delivered as many appointments as he has bills and probably suspects J of 'carrying on' with someone at the hospital!

J's operation was carried out in August and all has gone very well. Only one bad headache. The day after the operation J surprised everyone by going to the hospital shops with me. Just days after his hands etc. had visibly shrunk and continue to do so. His snoring and apnoea are greatly improved and he no longer has to cut his nails each week. No one has mentioned this, is it strange to J?

This last year has not been easy of course, but as one 'kind lady' said to me, "I expect you learn to live with it," and of course you do. J is 60 now and back at work full-time. He will have to have Radiotherapy as they couldn't remove the entire tumour as it was very large, but his Growth hormone level is now half what it was.

It's good to talk to others at the support group, though J claims that people don't need to hear his problems as they have enough of their own, but a problem shared can be a problem halved.

I think in some ways we are lucky. Yes J has a rare condition, but acromegaly is operable with only a small risk, yes it has some strange effects on patients but it doesn't deform, and yes it can be quite unpleasant, but there are many far worse off than us.