My wife has just been diagnosed with cancer

Hi Paul, So sorry to hear your news, I cannot imagine how you must be feeling at this time. Unfortunately for partners so much attention and emphasis is on the patient (rightly so) that you often feel sidelined. I'm afraid I have no idea with regard to your wife's particular type of cancer, I can only speak from my experience. Last April, aged 40, I was diagnosed with Grade 3 (node negative) breast cancer. I have subsequently undergone surgery, 6 months chemotherapy and 5 weeks radiotherapy, and am now half way through a 12 month course of Herceptin. Fortunately I have had my wonderful husband by my side throughout. He has had to put up with tears, tantrums, sickness, tiredness, long journeys to hospitals, to name but a few, and in all this time he has accepted me and my illness and everything that goes with it uncomplainingly. I know I have only managed to get through this past year thanks to him.

The fact that you so very obviously adore your wife will help her enormously over the coming weeks,and you mustn't underestimate how valuable your love and support will be to her (even though she may not always show it!!) You're right, you do get a different sense of perspective when something like this happens, especially to someone so young and otherwise apparently healthy (I was running 5k 3 times a week when I was diagnosed!!) Hopefully your wife's general good health will also help her through the treatment she may face, it certainly did for me.

One very good piece of advice I was given at the beginning of my journey was to use the internet wisely (!) In fact, I was only given two web sites my consultant approved of - Cancerbackup being one. It's up to the individual how much they want to know about their illness, I needed to know everything so in the end was given the pathology (if that's the right term?) report from my tumour, but with this I then only referred to Cancerbackup for further information. The internet is a wonderful source of information, but can also be dreadfully depressing at times.

You may also find it helpful to call the help line here.

With my very best wishes for a positive outcome,

Jayne

Pauline had her scan on Thursday. This time it was abdomen and pelvic regions only. To recap so far:

She had a lump removed from her neck diagnosed as a cyst by the surgeon and others after ultrasound and a CT scan on the head and shoulders. The surgeon showed a photo of the lump he sent to the path lab where there was a clear white disk, said to be a cyst, and the specimen was sent to the lab as a matter of routine.

The following week we were told it was a secondary cancer of the lymph node and that the primary origin was unknown as the cells were very atypical and that further slides would be prepared for analysis. A chest xray was taken (thought to be normal by the surgeon - "But I'm not an Oncologist" was his final words of comfort) and an endoscopic examination of the ear, nose and throat region by a lovely warm Emirati Specialist (who told us that his wife was diagnosed with cancer at 32 and lived for another 20 years) which also proved clear.

Tomorrow we see a consultant oncologist who will hopefully have the results of the CT scans and path lab sections in front of him.

We are scared beyond belief.

She seems so fit in herself... it is all so unbelievable and cruel.

On Wednesday 2nd, hopefully with all of the reports, she flies back to Taiwan and Harry (our son) and I follow on Friday 4th (the next week is a school holiday). We all have return tickets for the 10th, but I expect that Pauline will not use hers.

My company insurance will cover her for private medicine in Taiwan whilst I am working for them and Pauline has her own insurance anyway in Taiwan. The most likely scenario is that Harry and I will stay in Dubai for two months whilst I work my notice which also corresponds with Harry finishing school and me paying off all of my debts to the company, after which we shall be going to Taiwan.

The best scenario is that we will be told that it is all a mistake and we can return to Dubai after our holiday and business as normal, but we have been advised not to pin too much hope on that.

The worst scenario we don't want to think about yet.

Paul
Dubai UAE

Hallo to all three of you. I've logged on to wish you good luck for the results today. I'm glad that you have private health insurance and I'm sure your wife will get the best of any treatment necessary. Treatment for cancer can be exhausting and debilitating, but it does pass. I'm sure the two months of separation will seem endless, but I hope that in a few years time, you will all look back upon this as a brief nightmare. I'm sure that your steadfast love for your wife will help and support her throughout this time. Good luck. xx Penny

Hi there, I am pretty new to the site and I sent you a reply last week but think it went to private messages. I don't know how I did it as I thought i was posting it onto the forum!
Coping with everything you are having to deal with can be such a lonely isolated business but as the others and yourself have said it seems like you have a good team of specialists and things are moving along procedurewise. Awaiting test results is the worst and I have found that dificult to deal with but it really is one step at a time which also helps in absorbing what you are confronted with.
You sound like a loving family which is a big plus, just take up all the help and advice you are offered. My partner and children (7&4) have been marvelous. Though the children can't grasp the reality us grown up are facing they want to know what is going on and help where they can. My 7 yr old boy amazed me the other eve when I apologised for being a bit short tempered of late. He said "it's alright Mummy, it's because you are scared". He hit the nail on the head I am so very scared but he gave me so much strength in saying that and I just thought what a guy.
Being "normal" has gone out of the window for the time being but as well as the pain and anguish, we are all learning a lot about ourselves and eachother which can bring rays of sunshine to our darkest hours.
There will be plenty of people who read these forums who don't write anything but I am sure they are thinking of you all and hoping for the best outcome.
I have also found that the weeks I have waited for the op have not been as long as I first thought they were going to be, so the separation you may face will hopefully not feel too long either.
I am going into hospital on Tues 1st for my mastectomy and recon op so won't be around for a week or so but I will be back to see how you and everyone else is getting on.
DianeA x

Had the meeting with the Oncologist yesterday and came out greatly relieved.

The latest CT scan (abdomen & pelvic area) has shown no other tumours at all and the full report from the original CT scan shows all other lymph nodes in the area to be normal.

The final report from the biopsy on the original lymph node has also been seen - this suggest that the search for the primary concentrate on the head and neck with particular attention to a possible squamous (?) tumour in the sinus-laryngeal area. This was endoscopically examined previously by an ENT specialist and pronounced normal.

The Oncologist has suggested that the primary may have been destroyed by the bodies own immunological system and may never be found. He also confirmed that the tumour in the Lymph node was not excessively aggressive and could have been there for some time.

He has, however, advised that we must not rest in our attempt to get shot of this for good and that treatment should follow the following lines:

1) removal and biopsy of the remaining lymph nodes in the area,
2) additional searches and a screening regime of, specifically, the head and neck area for a primary or any other secondary tumours
3) radiation/chemotherapy.

We have decided that Pauline will return to Taiwan for this (The oncology there is reported to be world class) and she flies out Wednesday night with me and Harry following on Friday for a week. We expect that she will return to Dubai after her treatment and we can pick up the pieces again from where we left off.

As a psychological thing, we have also decided that Pauline does not have cancer!!! She has had a cancerous tumour removed and is undergoing further investigative and preventive treatment.

One thing that I must say about the doctors we have seen here (one Indo-English, one Emirati and one Finnish) is that the warmth they have shown is in stark comparison to the sort of aloof attitude I was used to with British doctors (I have been out of the UK since 2000 and hardly ever visited them before so it may have changed??). To have a senior medical man put his arms round her and give her a hug and tell her not to worry is a tremendous boost.

We have also learnt who are real and who are fair weathered friends. The very word cancer seems to make people run away and yet it is so common (1 in 3 will be touched by it, I am told).

Still got things to do before our "holiday" in Taiwan but I will report any other events as they happen.

Paul
Dubai UAE

Dear Paul, Pauline and Harry, Delighted that your worst fears have not been realised. Look on the proposed chemo/radiation as a positive step in protecting Pauline and not as the enemy. Also glad you have had such a warm response from your doctors. That really does help with coming to terms with it all. I have to report that I, too, have had the warmest support possible from two hospital oncologists (consultant and in the ward), the consultant surgeon, hospital doctors and the cancer ward staff - and I am pleased to report they are all British.
Very best wishes for what still lies ahead, Evelyn

Dear Diane, hope the surgery yesterday went well; just posting this to wish you well with your recovery. So impressed with your little boy's insight. Between you and your partner, to have instilled that kind of perception in so young a child you've done well. As a family you will get through it if at all possible. Evelyn

Thank you, Evelyn for your wishes and I too hope all has gone well, Diane.

I have just returned from Abu Dhabi airport where I have just put Pauline and Harry on a plane to Taipei. (One of our Chinese friends is the China Airlines Manager there and he has managed to get them both an upgrade to Business Class) I am flying out in two days for just under a week, no doubt without an upgrade.

What happens then depends on what happens in Taipei! I have told Pauline that she doesn't have to stay there and that she can come back here anytime for treatment. In spite of the encouraging news, we still oscillate from the peak of confidence to the troughs of doubts about the future. I will keep all informed, although I cannot guarantee access to the internet next week from my Chinese in-laws house.

I have to say, though, that I have recieved many messages of encouragement from many people on this site, some in the form of private messages. I take my hat off to those of you who, in circumstances much worse than ours, have positively glowed with good humour, kindness and sympathy. I have not come to grips with this whole thing enough yet to offer this service to others, so I am, at the moment, taking more than I give.

I have always believed in paying my round and look forward to the day when I too can give more than I take, but not yet.

Thanks everyone, you are incredible.

Paul
Dubai UAE

Dear Paul, So far so good! It all sounds most encouraging and here's wishing Pauline plain sailing. Take care, show her and Harry how much you love them both, and hope when we next hear from you it's even better news. Evelyn

Pauline has now seen a Taiwanese Oncologist. She tells me she has been through the mill today and they are going to start more tests on Monday. They think they may have found the primary in the nasal cavity. MRIs are planned, and she has been told that the treatment will take about 3 months.

I fly out to Taipei tomorrow, dunno when I will be able to post my next message.

In a trough of despair today, I miss her so much..........

Paul
Dubai, UAE

Excellent news that they've located it - otherwise you would have been left wondering - and, I presume, the fact that they had such a struggle finding it means that it must be so tiny it can hardly be seen! Best wishes to Pauline, and hope everything runs smoothly. Now it'll just be hard routine stuff going through the mill of treatment - hard work but worth it! Best wishes, Penny

I got back a week ago (just me and Harry as Pauline has stayed in Taiwan for treatment). I haven't put pen to paper here for a while as my nerves were a bit raw but are now starting to smooth out as we adopt to our radically changed situation.

We spent over two weeks in Taiwan, mainly at the Koo Foundation Sun Yat-sen Cancer Centre in Beitou, just north of Taipei. Within a day we had had a biopsy on the suspect site in her nose which confimed that she had a small nasopharyngeal tumour.

This was so plain on the original UAE CT Scan that I don't know how they could have missed it and declared her clear although I appreciate that this is, outside of the Chinese world, a very rare cancer with a maximum of 20 cases per year in the UK. It seems that the Chinese are genetically predisposed to this and also 95% of the Chinese carry the Epstein-Barr virus and have a penchant for raw fish and preserved meats, both contributory factors.

There then followed more CT Scans, MRI Scans, Mammogram X-rays, a PET Scan (that cost me a bit!!!!), endoscopes and investigation into a suspected thyroid problem unrelated to the tumour and a minor liver malfunction, also unrelated to the tumour.

They found two small "hot spots" on the PET scan (one in the groin area and one in the lung).

I dont know how they do it in the UK, but at the Koo Foundation, the consultants gather all of the test results and have a case conference every Thursday morning where they come to a concensus on the nature, severity and treatment programme for each case, and monitor progress weekly thereon.

The consensus in our case:

The two hots spots on the PET scan are unlikely to be cancerous and are most likely to be infections of some kind - all sorts of things show up on a PET (for example there was a hot spot around the line in her arm!!) but they will of course, follow up on these to make sure.

The primary tumour is small and will be attacked by radiation treatment on a daily basis. In this they will create a personalised mask to hold her head steady and them target 7 x-ray beams on the tumour. The ensure they miss any major structures of the head, they are to undertake a full MRI "survey" to plot all such structures and to determine the best locations for the beams. They have also removed all of her wisdom teeth.

To tackle any other small secondaries that haven't shown on the scans, they are it coordinate a chemo programme with the radiation programme.

The above will take about 2 months, with a further month to recover, following which there will be a 5 year monitoring programme with decreasing frequency as time progresses.

My poor babe is really being put through the mill and it aint even started yet. I am so impressed by her bravery, she is (mostly) staying cheerful through all of this but occasionally we have a bad period on the phone. All I can do from here is to listen and I think it makes her feel better and, in that respect, I am not complaining as she is the most important thing. ANYTHING I can do to ease the next few months is worth it although sometime I can't sleep after a bad conversation.

Her Doctor is a lovely fatherly old cove called Dr James ??? (Cant remember the Chinese surname) who is a bit of an Anglophile. He is also a visiting professor at Duke University in the USA and regularly visits a large cancer unit in Manchester where he picked up a taste for Guinness!! He says that the UAE doctors shouldn't have removed the affected lymph node as 82% of Nasopharyngeal cancers seed secondaries there and this is how most are initially detected. Removing the lymph node is effectively removing a trap for metastasing cells.

It really does show that the experience of the medical staff in specific cancers is vital and this is why we agreed that Taiwan is the best place for her.

Dr James is confident that with proper treatment we can get through this. He says that nasopharyngeal cancers are very responsive to treatment and that the success rate is high, particularly as the tumour is small, that no other secondaries are apparent and that Pauline is young and otherwise healty.

The worst thing is not knowing how the next few months are going to pan out and being so far away from her when she need support.

I have decided that I am not staying in Dubai (god-forsaken, sand blown, overpriced place) and I am actively looking for work in Taiwan. If I can't get that, we shall probably return to the UK and move into our house in Snowdonia afer her chemo and radiotherapy.

This is going to be an expensive logistics nightmare (Moving furniture, finishing work, returning the hire car, disposing of unwanted household effects, selling Pauline's car, schooling for Harry, terminating leases etc etc etc) and its all on my shoulders.

Regarding returning to the UK, I have contacted the local Oncology department at the big hospital near Bangor, North Wales and they are prepared to do her monitoring programme after treatment. The only trouble is, will they know what to look for??

I would appreciate your thoughts on the ability and competence of the NHS to do this for a cancer unfamiliar to them.

Keeping cheerful (most of the time)

Paul
Dubai.

second to none compared to how we are treated in the uk, i had a grade 3 invasive breast cancer, told from the day of diagnosis that i would be having chemo, told again when the surgeon told me my histology that i wold be having chemo, so me and the hubby geared ourselves up it then got told by the onc that i wouldn't be having chemo, so i got straight onto the internet, researched what would be the better treatment for myself, which was to have the ovaries removed and to go onto arimidex, i did this using the excuse to the onc that i didn't want to go through the menopause twice, firstly a pretend menopause caused with tamoxifen, then the real thing after 5 years, which has happened to some women, anyway, fought tooth and nail to get this done, then on the morning of my op i read in my notes that i had apparently "declined chemo" and my oncologists report said that i was a grade 2 cancer (a typing error) to cut a long story short, i had a full hysterectomy, with both ovaries removed and i am now on arimidex, i did complain to the hospital (said onc is now retired), my surgeon had wanted me to have chemo as i was only 44 years old at the time and the reason that my apparently "declining chemo" was a misinterpretation of a dictated letter. i was offered a second opinion, still not sure if i did the right thing by refusing as i will always wonder if i have anything floating about my body that shouldn't be there.
that is just my experience, your wife sounds like she is recieving fantastic care, i have never been scanned to check if i did have any mestastises (think i spelt that wrong) to be honest, i don't think the nhs can afford to run these tests on us.
mind you, if you are going to Wales, well, at least you will be free of any prescription charges, or hospital parking fee's. Wales is completley different to England and Scotland now.
anyway, the emotional feelings you are both having are all part and parcel to this awful disease, but on here you will recieve a lot of really good support.,
All my very best wishes to you, your wife and your son, fingers crossed that you sunshine will shine for ever xxx
lots of love
Alisonxxx

Well, now at least you know the true nature of the problem. It's Fate that your wife was able to go to this excellent centre in Taiwan where they have correctly identified and have a real specialist who knows how to deal with this. Your wife is in good hands now. It is fantastic news also that the success rate is excellent.

The new few months are going to be hard, your thousands of miles separation exacerbating this. I presume your wife is staying with family, and at least has some support on the spot. You must be missing each other so much. I know you said that technology is not so advanced there, so I suppose Skype with a webcam is out. I can understand that you must be feeling absolutely drained with this news, the separation, the sole responsibility for Harry. Please do come on here and have a moan and groan anytime you need to, but don't want to burden friends or family. We understand and can listen without impatience. We will also understand everything being done and what you are each going through.

Snowdonia sounds like a wonderful idea. I can imagine the major upheaval it'll mean to transport everything there. The Guardian ran an article on Dubai yesterday - the community built out into the sea - many ex-pats saying it was not what the brochure had led them to believe. Now you've been there, done that, it's time to move on, and when your wife has finished her treatment, a completely clean fresh start would probably feel very welcome. Psychologically I hope it will help to put it all behind you. Now that the diagnosis has been made, surely UK oncology units should be able to do the periodic monitoring, or else she could fly out occasionally to Taiwan, when seeing family. Could this professor even see her at Manchester?

Your wife must be feeling very bruised and battered after all the tests (I looked as though I had been hit with a steak mallet as I have "awkward" veins and they struggled to get cannula in every test and treatment). What specific drugs are they arranging? I do hope the side effcts, eg nausea, aren't too bad. If fatigue is one of them, many people just feel a bit tired, although I did feel like a zombie, and found it a huge mental effort to drag myself out of bed every day to get to the hospital for my RT. It is hard to understand the level of these symptoms unless you've experienced them at first hand! However, as I say, I have known friends who have even managed to carry on working part-time.

I want to wish you the best of luck once again. It's great that you come on here, presumably because you find some emotional support. I know that many more people read these than feel able to join in, so there will be hundreds wishing you and your family well. xxxx Penny

You might find Thread: 'Living with partner with cancer' worth a look at Paul. I'm sure from my own experiences, that it must be a really tough time for you, your wife and family! It is frustrating and worrying to be looking on from near or far - awaiting test results & treatment - with so much to think about and do at the same time!

God be with you.

John

Hi Paul,
This just a thought but have you thought of the Christie hospital in Manchester?? I'm sure this is probably the hospital that Dr James visits as its a very well known cancer hospital. I've just finished treatment there and there was another patient who came from North Wales for treatment so I know its possible to go there from the region you'll be moving to.. They also have a 'hotel' ward where you can stay midweek and go home at weekends so that you don't have to travel daily.

Glenis xx