[robbojnnParticipant]

hi just wondered if anyone has any advice.

cut a long story short i was diagnosed with mm june 2014,started myeloma xi trial,had 4 cycles now  next week or so going to start treatment to get me ready to harvest.

In july last year when i started treatment  we decided we had to say something to our boys (michael 14/andrew8).

Obviously did’nt want to scare them and use the “C” word, we explained that dad had something wrong with his blood which is why his shoulder was painful and that every mon&tues i went to the hospital for medicine.

They were fine with that and got used to me going they were re-assured that  i did’nt mind going and it was’nt  a horrible experience.

Cut to present i’ll be making quite a lot of visits starting v.soon that will lead up to sct rough guideline fingers crossed  3-4 weeks from now.

I’m dreading or should i say both myself and my wife are dreading telling the boys.

I only saw my transplant co-ordinator for the 1st time  last week and got my timetable. Unfortunately my eldest has been siting mocks at school (last one today) so we dare’nt say anything before they finish as he is doing very well academically.

We gone over and over what to say  but i’m worried sick about it. How will they feel about dad going to hospital and having to stay in for possibly 3 weeks, that not only am i going to look ill but i’m going to lose my hair, add all this to the fact that i’ll be in blackpool victoria hospital and we live in blackburn.

unfortunately my wife does’nt drive so they’ll have to rely on lifts to visit me and obviously with work and school visits will be restricted pretty much to the weekends.

I am proud to say that we are a very close family and i’ve only ever been away from my boys for one night,i know i probably sound like  a big wuss ,i just hate the thought of the boys being upset not only of me not being there but of my appearance when they can  visit.

Any help/advice would be much appreciated thanks………………

 

[dickbParticipant]

Myeloma UK produces a superb book for smnall children that explains about MM and how it affects the body. It’s done as a narrative from a small girl who’s father has MM. Suggest you have a look on the website.

[janwParticipant]

Hi,

When I was diagnosed with myeloma in 2010, my kids were aged 17 and 19. Both were taking their mock exams, so we were concerned about how the news would affect their studies and their lives. Being a bit older than your children, they did ask a number of questions and although you try to be honest, upbeat and positive, you forget they pick up on your emotions, your frequent visits to hospital, your side effects from the drugs, as well as conducting their own research on the internet.

Our older son was distracted because he had just started his first relationship at the same time that I was diagnosed. His girlfriend used to work for me as part of my business and therefore she knew what was happening as regards my health and could offer him some support. He also started university just after I completed my stem cell transplant and began living away from home in student accommodation. However, our younger son’s life was turned upside down: his brother was moving away from home; his first grandparent had just died unexpectedly; his close aunt had been given six months with bowel cancer; I had myeloma; he lost his part-time job/income from helping out in my business because I had to hand the business back to the franchisor; and my husband had to take over most of the household chores, together with driving my son to his sporting activities. Although you try to keep most of your serious discussions about myeloma when you are on your own with your partner, you also tend to forget the many telephone calls with friends, visits by relatives and neighbours and general questions by school parents when you end up talking quite a lot about the subject. As a result, we underestimated the impact on our younger son. He didn’t do very well in his AS exams and the school wrote to us suggesting that if he didn’t study harder then they would consider asking him to leave school. We realised we should have informed the school a lot earlier about my myeloma in order that they were fully aware of the situation. Once we spoke to them, the teachers were extremely supportive and provided regular monitoring of his academic performance. He went onto achieve good A level results.

Looking back on the situation, we tried to handle the matter as best as we could but you do tend to focus on getting through the myeloma rather than consider how the whole family will cope with the situation. Everyone in the family needs support to get through a very difficult and stressful time, not only the children but your partner who usually becomes your carer. My elderly parents also found the diagnosis and treatment very upsetting. They helped out a lot with looking after the kids, shopping and visiting me. I think there should be some family counselling offered to cancer patients, because although we try our best, there are obviously preferred ways of discussing and handling all of the issues around living with cancer.

Kind regards
Jan

[robbojnnParticipant]

thankyou jan

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