Does anyone really understand their treatment?

Looking to the future - talk to the Macmillan nurses

2010-07-17T02:54:53Z

Looking to the future - talk to the Macmillan nurses who visit the wards where treatment takes place re financial difficulties if unable to work, benefits, grants, disability aids etc, and find out if there is any help available whilst you are receiving care.

Checkout free prescriptions with your specialist, once diagnosed you will be entitled to an exception certificate for medicines. Ensure you get a sick note to cover you at work whilst having treatment. Ask about Carers allowance for your carer, disability living allowance for you.Grants are available to help with finances, and equipment and essential items like beds, fridges etc. You don't get anything till you ask.

Check payment protection clauses on mortgage, credit cards, loans etc to see if they can be paid whilst you are ill, most cover the first twelve months of illness from date of diagnosis.

Been in the army? Navy? then check with saafa etc to see if you qualify for a grant or help. My partner had part of his rent and council tax paid via saafa as he had made contibutions whilst serving.

There is hope! our thoughts are with you

Non Hodgkins Lymphoma - symptoms and side effects

2010-07-17T02:47:19Z

My partner was diagnosed with non hodgkins lymphoma - aggresive, in july last year - six months after discovering a lump in his left groin that grew to the size of a tennis ball. Following the biopsy and removal of the lump he developed kidney and stomach pains and suffered drenching night sweats, he was told he would need chemotherapy.

We were both knocked for six by the diagnosis, I closed down our businesses and I took on the role of carer whilst he underwent chemo.

We too like many of you, had a brilliant consultant, everything was explained sympathetically and everyone including his own nurse were so helpful.My partner underwent 8 cycles of chemo and steroids over 6 months. During the first 9 days he ate little, slept alot and had heavy night sweats ( I joked he was going through the menopause like me) the sweats which were a symptom of his lymphoma, eased as the chemo cycles took effect. He also had diahhorea, vomitting and some sleepless nights, along with confusion and a short temper due to fatigue.

There were between 4 -8 decent days when he could eat normally but smaller portions, and he managed to do usual tasks he enjoyed doing, before he went back for the next batch.

My man lost clumps of hair at around the three month point so I shaved his head, he said he looked like uncle fester (which funnily enough he did - sorry to say) but it grew back within a matter of months following his last cycle and now he is in need of a haircut. His hair has grown back thicker and curly too just like when he was at school ( Soulmates - childhood sweethearts re-united after 32years apart ).

8 Cycles completed and in february of this year we were told the cancer had been held at bay.

Confusion over medication!

2010-07-17T02:40:51Z

Remembering to take medication was our biggest hurdle, especially when his temperature shot up, he got confused and over tired, and often couldn't remember whether he had taken them or not, so I devised a chart a bit like a calender to put near his medication, this told him which ones, when, at what time, and how he should take it, ie with or without food, he would cross them off after he had taken them.

Leaving him in control of taking his medication was the best option so he didn't feel incompetent.

No longer in control of your body.

2010-07-17T02:38:36Z

Coming to terms with the fact that you are no longer in control of your body has been the hardest part of the task.

Keeping my partners spirits up has been so hard, especially when immune systems deplete, resistance is low, emotions go haywire, and tempers flare due to frustration and there seems no end to the drugs and feeling sick.

We have weathered all storms and come out fighting. Support, love and help when needed plus very broad shoulders to lean on is the best medicine you can offer, and unfortunately the only thing you can give. I found it better to not molly coddle my man and let him fend for himself in as much as he could, that way it did not take away his dignity and his pride.

Autogolous Stem Cell Transplant - neutropenic diet

2010-07-17T02:32:34Z

My partner has been in hospital now since May after the lymphoma returned it has wrapped itself in and around the sciatic nerve in his right leg. We are awaiting high dose chemo and a stem cell transplant after we were told his lymphoma had returned and it was a more aggressive strain.

For those of you out there who are awaiting a stem cell transplant and undergoing high dose chemo, ask your consultant about anything you are not sure of, ask them to explain each stage of your transplant as well as each step of your treatment, so you know what the side effects are likely to be of all the treatment you are to be given.

With High dose chemo and a stem cell transplant, you are given an intensive course of chemo once the chemo has worked it's magic, growth factor drugs are given which help produce and release extra stem cells from your bone marrow, this is called 'harvesting' [preparing for removal and storage of stem cells]. The drugs will be given through a 'Hickman Line' which will be placed in your chest. This is much easier way to have drugs administered and blood samples removed.

Once the stem cells are ready for removal you will be placed on a machine similar to a dialysis machine [sounds a bit like a twin tub washer I thought!] we called it the 'tardis' time machine after reading that recent research trials have concluded that life expectancy can be prolonged by up to 2 - 5years following an autologous stem cell transplant.

The stem cells are removed from extracted blood and seperated along with platelets and frozen for later transplantation back into the body, after the last cycle of the high dose chemo.

At some point during the harvesting, when your blood count drops below a certain level, you will become 'neutropenic' [your immune system will deplete and you will be susceptible to infection] you will need to follow a 'neutropenic diet' for which you will be informed what foods are not allowed ie nuts, cream, runny eggs, yoghurt, fresh fruit and veg, rare meats etc.- ask for a diet sheet if you are not given one.

PLEASE ENSURE YOU WASH YOUR HANDS THOROUGHLY AT ALL TIMES before entering the ward .

Limit visitors and avoid visiting if you have cold or flu like symptoms or tummy bugs.

Dry mouth and mouth sores are common - pineapple is reportedly good for your mouth. Diarrohea is also a common side effect of the drugs and my partner also developed piles

I now take sunday roast dinner in, in a jumbo flask for him as a treat each week [ this must be piping hot when packed and served to the patient within the hour] he liked the prepacked fruit pots from the tesco late shops - [no disrespect to the NHS but their food is awful some days] and when undergoimg chemo you lose your sense of taste.

Pre packed ice cream is allowed - I regularly take us both a white magnum in on an evening. We get out the portable dvd player and sit watching a movie and huddle up, just like being at home.

Still awaiting the Stem cell transplant after the machine broke down and needed to be replaced then my partner developed a bug and the transplant had to be stopped.

We were told that if the bug got into the stem cells that were to be transplanted, his immune system would be too low to fight it off and so it has been postponed till the bug has cleared up. With a bit of luck he may be able to go home until the next harvesting session.