Chronology of events:
In August 08 my hubby had a persistant cough and was ref'd by his GP for chest X-rays. He was diagnosed with a pulmonary embolism (blood clot). After CT, PET and bone scans, this was elevated to non-small cell carcinoma of the lung. The original bone scan revealed a 'hot spot' on the scapula. When the lung was excised we were told that the scapula area was clear; we sighed a heavy sigh of relief. The tumour was 10 cms at the time of it's excision but we were told that my hubbies recovery was exceptional. At the six week point he suffered two massive siezures.
A bleed on the brain was blamed, probrary because he was taking Warfarin to prevent a further blood clot. This was soon diagnosed as a brain tumour following an MRI. The tumour was classed as operable. We had an appaling Christmas waiting for a date to go for surgery. My hubby experienced 3 days of unparralled headaches over the 'festive' period. I took him to RLUH A & E on the 30th of December whereby Abdo, brain and chest CT scans followed. The abdo scan was clear, the chest scan showed a tumour on the left lung. The brain scan showed multiple tumours and chronic swelling. The headcahes were caused by tumours that should have been treated with a high dose of steroids. He went from 2mg to 16mg overnight and the headaches subsided. On New Years Eve we were told that the brain tumours were now inoperable
Yesterday, the 17th January we saw the oncologist for a follow up appointment. It appears that my husband's lung tissue is being analysed at the Liverpool Women's hospital pathology department; they again question the diagnosis. Even though Ewing's sarcoma is rare, it generally reponds well to chemo (but not in the brain), he requires a bout of radiotherapy to tackle this head on. If he hasn't responded well and the pathology sheds a different light on things, there will be a third diagnosis.
The dox believe he had a primary elsewhere but cannot pinpoint where at present. A scheduled bone scan was cancelled so we may never know. It is worrying as we are given massive doses of optomism which are generally shot down by more disppointing news. I long to speak to someone in this position. I am aware that many people suffer from cancer in one form or another, common or rare. After so much misplaced optomism, we long for a bit of good news or at the very least, a bit of hope x
FormerMember
Hello Danielle,
I'm so sorry to read about the journey your husband has been on so far. It really has been a roller-coaster for you both hasn't it? I can't answer your questions as I do not have the same cancer but I understand your need for some more positive experiences. I can send you a hug though and hope that your husband will get a more definate diagnosis so he can then get the right treatment.
Thanks Pheonix, just gotta pull myself up by the breeches and start to change my mental attitude. My hubby is the patient but I feel like i'm suffering in other ways:
Hiding my feelings and trying to protect him. Cooking, cleaning, washing, ironing, driving etc.
I want to do everything I can to alleviate his symptoms so I run around like an idiot and injure myself. In the past three weeks I have accumulated three injuries, we were decorating pre-diagnosis and a door fell over onto my legs and I couldn't walk for two days. Whilst assisting with a jigsaw my back went into spasm and I couldn't move for an hour. I fell on ice and aquired a coccyx injury. As nominated driver I have had major difficulties getting around.
There is also the admin side of things, my hubby doesn't deal with bills, he hates paperwork and has always relied on my to deal with everything. The volume of things I've had to deal with has been overwhelming, critical illness, contacting numerous medical bodies, blue badge, DLA applications, frequent A & E vists. I've had to go through the process of cancelling a holiday with complete lack of sympathy from the company. It breaks my heart to have to discuss anything personal with complete strangers. It makes things so black and white and one dimensional.
The experience has opened my eyes to being a carer. I may sound self sanctimonious and indulgent but my stresses are valid, they are real and at times too much to bear. What an un-appreciated group of people they are. Carers allowance is poor and the paperwork is at present a burden. I am currently employed full time but as my hubby is at risk of siezures and has constant symptoms from ever changing presecriptions, I cannot and will not leave him unattended. I worry about everything including my job, my boss and my collegues. There is no instruction book, I'm picking things up slowly but whatever the future holds, we will fight it all the way x
So much to take on, no wonder you are having accidents as your mind is all over the place! It's perfectly natural to worry about everything but it's how you cope which makes the difference. You MUST make some time for yourself. It's such a cliche but if you burn out then you will be no help at ALL!! Find out all you can about how your finances will be affected and then find out what you will be entitled to ie benefits, grants etc that will help ease the situation (Macmillan Benefits advisors on this site are wonderful!) Talk to HR or Personnell or whatever dept you have at work and explain your situation and ask what can be done about working from home/part-time etc. Make lists and prioritise what needs to be done re paper-work and then tick off each thing on the list as you do it (gives a great sense of satisfaction doing this lol). THEN, do something just for YOU. Whether it's meeting up with friends for a coffee, manicure, massage etc, whatever 'floats your boat' as they say. This is vitally important for your well-being, it's not being selfish or self-centred. Cancer affects ALL members of a family, not just the person with it. Ask for help if you need it and NEVER turn down any help offered. It's not a sign of weakness, that you can't cope all on your own.
Sending you a gentle hug so as not to aggravate your bruises lol.
