Hi Vanessa
When I was first diagnosed with myeloma in 2010, I was covered for private medical treatment via my husband's employment health insurance with Aviva. My initial treatment was with Thalidomide and Aviva stated they would only pay for six months of the drug. This was OK because after four cycles, I was ready for a stem cell transplant. Aviva also restricted the use of the bone enhancing drug Zometa for just six months. To pay individually for a monthly infusion of Zometa would have cost me around £600 – £800 per month. Aviva also set an agreed rate for all different types of treatment and when my line was taken out by a specialist who charged above the rates approved by Aviva, I was billed for the outstanding payment.
All of my stem cell transplant treatment was carried out within an NHS hospital with my consultant supervising the process, with the NHS billing Aviva for the treatment at over £40,000. You can see with these charges why BUPA are suggesting a £300 a month fee for your medical insurance.
When I was restricted to six months of Zometa via Aviva, I changed to the NHS in order to continue to receive the drug on a monthly basis. I think the NHS offers a marvellous multi disciplinary team approach to cancer treatment and I have been more than happy with the advice, monitoring and treatment which I have received from my local hospital. I certainly would not worry about cancer treatment under the NHS.
When my husband asked in 2011 to reduce his hours to three days a week in order that he could spend more time at home to look after me, our lads and the household chores, his company MD was not happy with what he viewed as a lack of commitment to the business and has since tried to remove him from the company through various attempts. After two years, the company finally issued my husband with redundancy notice last month, but have placed him on gardening leave to restrict him during his redundancy period from approaching other competitors for prospective work whilst still employed by the company. Luckily, he has a pension from his previous employment otherwise we would be seriously worried about our finances, especially as I also lost my long standing successful franchise businesses and income a month after diagnosis in 2010.
Other members of the forum have offered some good advice on following up possible benefit which you might be entitled to claim. I hope you are able to sort out your financial worries especially as you need to focus on Stuart's health and helping him through the treatment.
Best wishes
Jan
Hi David
We insured with World First Travel Insurance (0845 9080161) and my dad with Travel Insurance 4 Medical co.uk (0845 9080121). Our two kids aged 20 (suffers with asthma) and 23 had one policy at £40 plus our policy was £83 which covered my myeloma and hubby's stress, asthma, irregular heatbeat and hiatus hernia. Both companies appear to be linked because they share the same trading name of Rothwell and Towler, Exeter and both offer the same policy details. I struggled to find insurance for my 94 year old dad because of his age,skin cancer and he is waiting for surgery on a rodent ulcer on his lip. I filled in the medical insurance questionnaire on Money Supermarket website with my dad's details and they came up with Travel Insurance 4 Medical.
I love your pictures and welcome your advice on tracing family trees.
My mom spent many years trying to trace her true parents, but because she was illegitimate and adopted the whole process proved very complicated. She managed to find out quite a bit of information through the official adoption court process, but her mother's birth certificate details were very limited. She has tried purchasing quite a few certificates and registering on various genealogical web sites, but unfortunately never managed to trace the family line further back than her mother. Her true father was a happily married business man, who had an affair with his young single girl shop assistant, but refused to acknowledge his female child born out of wed lock because of the scandal it would cause his family. Being an unmarried mother in the 1920's was a sin and therefore my mother was adopted through friends. However after the adoption, her mother suffered severe post natal depression and was placed in a mental institution which was the normal process for the 1920's. Unfortunately she died in the institution and following a severe fire in the building, all her medical records were destroyed. Her grandmother was a travelling Romany gipsy and many did not bother to register with the early 1900 census details.
When my mom died last year, I thought I might try again to trace the family tree but so far I haven't found the time – perhaps I should add it to my bucket list!
Love Jan x
Hi David
Great to hear you had a terrific holiday in France. We travelled to France for holidays for over ten years enjoying lots of different self catering accommodation across the country.
We have just returned from Tenerife where we spent ten days of lovely relaxation,sunshine and excellent food. Our family travel insurance was reasonable at £120, the same amount my 94 year old father had to pay with his skin cancer and high blood pressure. Several companies would not insure my husband because of his time off from work due to the stress of my illness and there were lots of companies unwilling to insure the elderly.
My mom was adopted from birth in 1925 and unfortunately despite hours and hours of research, we have never been able to trace our family history past her mother mainly because my mom's grandmother was a Romany gipsy with no details on their family on the census information. When my mother died last year, understandably she regretted not being able to trace her family tree which was top of her bucket list.
Hopefully you will be able to enjoy lots more holiday times with your grand children.
Love Jan x
Dear Mari
I've followed your posts about Stephen's myeloma because he was the same age as me and diagnosed in 2010 the same year as my diagnosis. I felt so sad for you both when the second SCT did not work and Stephen's health started to decline. It seems so unfair when people close to you die so young and too soon.
I can't imagine how difficult this must be for you. You have my heartfelt sympathy. I hope you will be able to remember the beautiful, happy and loving times you shared together to help you get through the days and months ahead.
Love Jan x
Hi Helen
I was thinking about you the other day and wondering how your treatment was progressing. Wonderful news about the huge reduction in your light chains …long may the low count continue.
What an great experience to remember going to the see the Rolling Stones. I only managed to watch their performance on the box, but was impressed by their high energy levels and entertainment value even if they looked totally knackered at the end. Love the photo of you – you look so relaxed even if you did feel exhausted which is to be expected after such a long journey.
I think you have done remarkably well to carry on working whilst you were on velcade for as long as you did. During cycle 3 & 4, I remember the feeling of discomfort and weakness in my legs, as well as the one leg above the knee going completely numb. At least being off work will allow you some time to recover, relax and if possible some more days out.
Take care.
Jan x
Hi Tina
Living with an unpredictable and incurable cancer is emotionally tough and full of worry for all of us as well as our carers, family and friends. The diagnosis of cancer comes as such a tremendous shock, the treatment is intense and during any relapse period we have more time to think about the changes to our lives, possible future treatments, shorter life expectancy .. all of which are not exactly uplifting topics for anyone!
You constantly read in the media how cancer patients are brave, with advice to remain positive, which is all well meant but realistically there are going to be days when we are worried, upset and sad about the whole situation. It's just trying to manage any such anxiety as best as possible and for some of us a good cry tends to release the bottled up stressful emotions. Like Tony, I try to keep the weepy times to myself rather than upset the rest of the family.
Also I think with you living at home in uncertainty with unanswered questions about your current medication is certainly going to cause you worry and concern, especially as your next clinic appointment is not until the beginning of September. But at least next month you will have some current blood tests and the opportunity to talk to your consultant about the decision to come off maintenance treatment and discuss the best way forward for you.
I believe in counselling as an effective way of tackling our range of emotions which we experience when living with cancer – it's better than bottling up all of your emotions. Because you felt better after seeing the psychologist, I would ask at your next hospital appointment if you could arrange some further consultations – any such help is invaluable.
Take care.
Jan x
Hi Christine,
You are not alone with being anxious about SCT. I remember crying myself to sleep for days before my planned SCT because I was unsure about what was going to happen and whether I would cope with the sickness and feeling so poorly. At that stage, I didn't realise this forum existed which provides some good patient's experiences of SCT and details of their daily progress. Try not to worry too much. Just take each day as it comes and listen to your body.
When you go back into hospital, I would suggest you talk to your consultant about the sickness feeling and the constant trips to the loo following your chemo. You need to get your doctor to prescribe some anti-sickness drugs on your treatment chart just in case you need them, otherwise if you feel sick during the night you might have to wait for ages until the doctor on call prescribes the drugs. Unlike Tom, I did use the whole stack of sick bowls and took many home with me!!
I hope the harvest goes well.
Jan x
Hi Dai
Yes, it's a forward thinking new scheme which was first piloted and funded by the Queen Elizabeth Hospital Birmingham Charity and the University Hospital Birmingham to allow patients access to their medical records. It's only in the last few months that the scheme has opened up to patients.
When the Queen Elizabeth hospital Birmingham was built in 2010, all paperwork systems were replaced by computer systems. Therefore, this hospital is probably much more advanced than some older hospitals in relation to how they store, monitor and retrieve their information. On my clinic visits, my consultant can show me a graph of the progress of my increasing light chains over the past three years, which is a powerful visual tool.
Let's hope the scheme expands to other hospitals across the UK for those patients wishing to view their personal medical records.
Jan W x
Hi Jane,
It's good news you were diagnosed at stage 1 before any bone damage or other complications. Keep asking your doctor/nurse for a print out of your blood test results. My hospital now allows patients to log on line to see all of your patient notes, including details of all blood tests and clinic dates. They are trying to sort out releasing information about pp levels and light chain levels.
I think my stem cell transplant really knocked my energy levels and with the bone pain, fatigue and lack of mobility, I still spend a good 12 hours a day sleeping otherwise I feel ill. I have to sit down for a large proportion of the day and take things easy. My husband carries out most of the housework including cleaning, washing, ironing, gardening and looking after the kids as well as taking care of me. Unfortunately, I'm no longer a good employment prospect.
Jan W x
Hi Dai
What a wonderful way to spend the day with all of your close family. I hope everything went well and you felt OK. You will both certainly have some lovely memories of today's great event.
Regards Jan W
Glad to hear you are feeling much better after the six cycles of chemo. I could have swapped clothes with you because on thalidomide I went from a size 12/14 down to a size 8! All of my trousers/skirts just slid off me. I was flat on top and flat everywhere else. It's taken a couple of years for the weight to go back to my normal level and my bust/hips are the same measurement as prior to the treatment. But I'm up to a size 16, because the hump across my back from the collapsed vertebra requires a larger top!
I think my third and fourth cycles were the worst, but luckily I didn't have to carry on with any further cycles. Reading through other patient's comments, the side effects do seem to plateau at around the 4th cycle. Like you, I also had thrush and legs which wouldn't work, but I also had fatigue, nausea, a urine infection, constipation, bed sores and bone ache.
But at least the treatment is behind you and your myeloma levels are doing well. It was good to read your update and see you are doing well.
Take care
Jan W
That's really good news about the relief in your back pain as a result of the Kyphoplasty. Did the operation manage to straighten out any curve in your spine or regain any lost height? I often get frustrated with the curve/hump in the top of my back from collapsed vertebra, especially when my clothes get stuck across my back when I am trying to take off a tight top. The hump is also not comfortable when sitting down in hard backed chairs.
Any idea what is causing your leg and pelvis pain? I know when I have slept on my one side for most of the night in bed, my pelvis really aches for a good few hours when I wake up. I have a lesion in the top of one of my thighs but I can't remember whether it is the side which the pelvis aches! Hopefully your next cycles will not cause you any more pain or deterioration in eyesight, although you may need to watch out for muscle weakness in your legs which kicked in with me during CTD cycles three and four. You just need to remember, the side effects from chemo will soon disappear after you have finished your cycles.
Jan W
Hi Peter
The joys of steroids! My consultant thinks about two thirds of us experience some side effects when taking steroids including increased energy, reduced arthritis pain, not being able to sleep, restless and then when the drugs are withdrawn feeling ill, depressed or aggravating pain with existing arthritis. Although I reacted very badly to the chemo drugs with severe nausea and vomiting, fortunately the steroids did not affect me at all. It's so strange how differently our bodies react to various drugs.
When my son was under five, he suffered with some severe asthma attacks which meant his body was pumped full of steroids and antibiotics for chest infections about five or six times a year. I always remember him at aged 4, in a children's high dependency unit hospital, wheeling along his drip and shaking from top to bottom with the side effects of steroids. The shakes used to last for days. Whilst on steroids, he was as high as a kite running around non stop and with no purpose for hours, unable to sleep, constantly going to the toilet for a wee and constantly eating. When the steroids stopped, he was depressed for a good week afterwards and so angry with everyone and everything.
Remembering all of my son's side effects with steroids and the large amount of doctors giving advice on the drug, I discussed with my consultant about reducing the dose slowly over three or four days. He agreed I could come off the steroids slowly and I didn't really experience any negative symptoms – so it might be worth asking your consultant.
I hope your appointment goes well and you learn a little. Although my first myeloma consultant was more than happy for me to ask questions, he just used to avoid answering them!
Jan W
Hi Eve
For some unknown reason, I don't usually read the postings under the heading of carer. But I have just read through your comments and feel there are many of us on this forum who want to help and advice you, however finding the right words or tone is very difficult to achieve around the sensitive subject of preparing for the end of life.
In today's Mail, there is a young man who has recently lost his wife due to cancer and he is blogging his experiences and positive advice to others facing this situation – see clearlypositive.co.uk He does make some good comments about finding time for yourself as carer, doing activities together however little and openly discussing your past lives together including the good and bad times so that you have some of Slim's recent memories and views to help you through the process of recovery when you lose Slim.
Many years ago, I purchased special albums for all of our parents to complete with their memories about their families, school life, teenage life, their first job, when they met their partner, etc. Unfortunately none of them ever got around to filling in the information. With three of them dying over the last three years, I would have loved to have their personal written memoires, which could have been passed onto their grandchildren. I have photo albums, but I can't remember who is who and again wished the photos had some description against the pictures. I know some people find it helpful to write their children/grandchildren letters to open on their special days such as weddings, birth of children.
On a practical side, I wished I had been more prepared with helping my mom with her last few days. She was so hot in hospital even with their air extracting fans and they would not allow bedside fans, but patients could bring in little hand held fans. She had a viral/fungal infection so she could not breath very well and her temperature was very high. Her nightwear was too warm and she needed thin cotton tops/cropped cotton trousers (very difficult to quickly find when shops only had winter clothes in stock). A baby feeding beaker was required because she couldn't drink through a straw and her hands were shaking so much when using a glass. The hospital had run out of crushed ice to sooth her dry mouth and we also needed a few ice packs for around her body because of her ever increasing temperature as well as some ice pops to suck. Ear plugs were required so she could get some rest during the night.
On an emotional level, I certainly miss the hugs and kisses from my mom and her ability to talk and help me through my bad myeloma days. I tend to put on a brave face in front of my husband and family because I have seen their stress and concern when I went through my initial treatment following diagnosis. With both sons their exam results have suffered and my hubby had to take time off with the stress of having to care for me, the kids, look after the house and do his job. It is so difficult to openly and calmly discuss death and dying with a loved one. As the patient, I do not welcome the thought of how I am going to die, but it's our loved ones have to pick up the pieces afterwards.
I hope you continue to stay on this forum and give your wealth of experience and advice to others needing support.
Love Jan W x
Hi Mari
I'm really sorry to read about Stephen's poor health. You both must be so worried and concerned about whether his current treatment will continue to help with the myeloma. Feeling breathless and not being able to walk anywhere is frightening and concerning. My son has experienced some very bad asthma attacks over the last year due to aggravation from mould spores in his Nottingham rented student accommodation. He couldn't walk or move for days after the attacks and even now, the pollen and mould in the garden can tighten his chest. It's definitely not a pleasant experience for anyone to suffer. I hope Stephen's body might still be recovering from his second SCT and perhaps over the coming months his symptoms might improve just a little? Fingers crossed there are a few more good day for both of you.
Love Jan x
