Zotam- Lisa's Mum

Hi Zotam,
Have just read your comment about brain mets. I am sure there are lots of people interested in what you have to say! It sounds a bit odd saying interested in Lisa’s post mortem, but you know what I mean!

I read your posts about Lisa with interest. You both seemed such lovely people.My Mum died aged 30 from breast cancer and my nan ( who is still alive ) has struggled with it for such a long time. I was 12 at the time and now have secondaries myself. My own daughter is 11. Love julie

I have just thought that maybe it is too much for you to have your own thread. I am sorry if i have made things tricky. julie

No its fine Julie
I will write on here later … just wanted to answer you straight away. I am rushing out now but will tell you about Lisa later this morning or afternoon.
I come on here often and I keep up with you all especially the lovely people who wrote to me when Lisa was so ill and those that followed her story. She was an unusual case I know and thats why they wanted to do a PM.
Also if Debs reads this … thanks for your message.
Its still a long uphill struggle without Lisa … my Dr said it would get worse before it got better and he was right. You don’t realise that you are bit numb in the beginning but unfortunately the anaesthetic wears off! Simon is currently in the States, since Sept 22nd … he has taken 6 months career break to travel so I am having to go and feed 5 cats and look after house and have temporarily adopted Lisa’s dog. I have 2 dogs of my own … one being a puppy ( I must be insane) so I am kept very busy which cuts down on my ‘thinking’ time!
Will write later as promised
Love to all of you … Sue xx

Lisa’s post mortem for those who want to read it … but please don’t if it will upset you although to me its comforting to know why she died and I hope it will help the medics find answers.
For those who don’t know Lisa’ history … She was dx in May 2007 with IBC … she was aged 33 and with every chance of survival as she went immediately that she found the lump in her right breast. She received her first chemo 9 weeks later ( too long a wait I think) and by this time she had noticed a small lump under skin on her lower back … towards her hip. No one was really very interested and said that if it did happen to be cancer the chemo would ‘mop it up’. A young Dr who Lisa befriended however did take notice and did a biopsy on back lump … it was discovered to be the same breast cancer. This changed the whole thing as she now had a secondary cancer and therefore terminal cancer! She had the chemo with really no problems … bounced through it all determined it wouldn’t get her down … not even losing her hair. She was a very pretty girl with dark hair and dark eyes who didn’t look her age and has been described by friends and work colleagues as beautiful & vivacious. She donned several baker boy hats, big earrings and lots of eye make up and looked just as beautiful. So sure was she that she was going to beat this ‘thing’ and really she felt so well considering. She had a mastectomy and LD flap recon in November which she also bounced through. The surgeon did a wonderful job and she was so pleased with her new breast … had virtually no pain not even from her back …and the surgeon also removed what was left of the lump on her back and 19 lymph nodes. The scans that followed showed no cancer left at all anywhere … no cancer in her lymph nodes when they were removed. All was well and we had a great Christmas. In Feb she had to have 3 weeks of Rads to her back as a precaution. She got headaches which got worse as weeks went on … they said it was the rads. Then she started being sick, I made her go to hospital … she had scan … result 2 brain tumours … one very large in front lobe. Operation for removal end of March then WBR to other tumour in back of head and in case of any other mets. By April tumour at back of head had doubled in 3 weeks from 1.5 cm to 3cm! Growing very fast. From then on she had lower back ache … a one day session of rads …then she discovered another lump under skin on her back not far from armpit. She managed to get Avastin along with Taxol in April. The lump shrunk to almost nothing after 3 sessions of Avastin and 6 of Taxol. Then in May awful pains in neck started … they upped her steroids and she bloated up. Still she smiled through it. End of May she went in for pain relief. She hardly ever complained and so by the time she decided she couldn’t stand it any longer she was in agony and having double vision and a slight palsy at the side of her mouth. The pain relief worked in hospital but she was spending all the time in bed and sleeping a lot. She was on Morphine, Ametrypteline and another muscle relaxer. When awake however she was still the same Lisa, still joking and making plans for the summer. Suddenly on June 10th she couldn’t breathe and went downhill that day and died at 5pm. The shock will stay with me forever. She had had scans the week before and everything looked good apart from a thickening in the spinal fluid. A lumbar puncture was inconclusive. She was given anti viral, anti fungal, antibiotics.
I was asked the day after she died by the young Dr if they could do a post mortem as they were shocked themselves why she went downhill so rapidly … even though she had been an unusual case all along. We agreed …after thinking about it for 2 hours …because Lisa was so keen on forensic science and believed that once you had died only the body was left and that the person had gone and so if your body helped the medical profession then they should have it… Also we know she would want to help anyone else in same position. She had carried a donor card for years. We agreed to them keeping tissue for later use but Simon would not agree to them keeping whole organs. That wa sup to him I feel.
The PM report is several pages long but I will cut it down to a few lines.
She had no cancer at all in any organ in her body … all organs were healthy and weighed what they should. The good news ( for all of you) being that all the treatment she had been having had cleared any cancer cells throughout her body even the ‘lumps’ of cancer that had appeared under the skin.
Her brain wasn’t so lucky … there was " diffuse meningeal thickening, particularly around the central aspects and along the inferior aspect of the cerebellum". There was " thickening of the cranial nerves( third, fourth, fifth and sixth) " . She also had a cyst not far from where she had op to remove the large tumour in the front.
There was a lot of other medical jargon. But it was saying that although the CT scan couldn’t pick it up a week before the cancer was spreading quite rapidly within her brain and starting to grow new tumours. There was nothing they could have done even if they known only give her pain relief … probably by knocking her out. The thickening of the cranial nerves was causing the palsy, the double vision, and the awful pain in her neck. Pneumonia was what killed her that day but I was told that she would have suffered worse had she lived any longer as the brain controls everything and so she could have been paralysed, blind, deaf … who knows.
Please don’t anyone think this will happen to them because she was unusual hence them asking to do a post mortem. The speed that her cancer wa sgrowing in her brain was very unusual. I asked if pm report had helped them and they said yes it had and they had kept tissue to do research on. She had been doing so well and so hadn’t really suffered I am pleased to say …apart from last couple of weeks where pain in her neck got really bad…and certainly didn’t know she was going to die that day.
I miss her dreadfully and no one should have to watch their only child die … my very best friend … we did everything together. I have really awful days where I feel I cannot cope without her … but I try to keep busy and just hope this pain will stop one day. If I have any consolation from this at all its to know that she could have suffered so much more had she not died that day … and believe me she did not deserve that to happen as she had always been so positive and upbeat and always trying to make other people feel better! Everyone who knew her were in total shock.
I have written far too much but wanted to explain to anyone who didn’t follow Lisa’s story what had happened initially and I know that all of you (too many to name but I do remember all your names) who wrote to me at the time during her months of treatment and after she had lost her battle.
Lots of love to all of you and I just know that one day they will find the answer to why this happens to so many otherwise healthy people. No one could have been fitter or healthier than Lisa … her organs after she died proved that.
Love Sue xx

Thanks Sue for sharing these very private details with us, my heart goes out to you. This disease is so unpredictable and we all know the road that it leads us down, when we are on chemo we feel so dreadful and I personally always think the worse the effects the better the shrinkage. That will sound daft to alot of people but when I cant lift my head off the pillow or manage a shower without feeling I am going to keel over I think it is because the chemo is doing its stuff. The results of the p.m. could just prove that theory. Here’s hoping.
Thank you again Sue you have been a truly valuable friend to us on the forum and your duty as a mother is beyond words. I hope the waves of grief that knock you off your feet become less frequent and you find peace comfort and joy in all you do.

Love Debsxxx

Thank you for taking time to write Lisas story.I was diagnosed on 30 June so remember reading about her at that time.I didn’t post as I did not want to intrude on your grief.But I was very moved by your posts and the obvious love you had for each other.It was a brave but very good decision to have a PM.It can only help the medical profession to beat this thing.It will be very reassuring the girls on chemo that the disease had been destroyed by it.
I do wish you all the best and hope you can smile at your memories of Lisa before she was so ill.She was a brave and inspirational girl and you can be so proud of her,I am sure she was also very proud of having a mum like you!
Take care of yourself,
Love
Dot
x

Thank you so much for sharing your and Lisa’s story, I cannot even being to understand how hard is must be to write down, but the fact that you are willing to do so, to help others is amazing, thank you.

Sitting here shedding tears for you and your beautiful daughter helps not at all I know, but I can understand more of how my own mother is feeling watching me having my now 2nd battle with this dreadful disease now. She and I are also best freinds and I know how it is tearing her apart to watch what is happening to me, and to not be able to hold me close and make it all better, this is a battle that all who love me are fighting alongside me, and I am grateful for that beyond words, thier strength helps me.

My heart goes out to you and your family, and there is a bright star above where Lisa is now.

Thank you for sharing Sue

With my love & respect
Nikki

Dear Sue,
So difficult to find the right words but I read along with so many others your many posts about Lisa’s progress and was saddened by her premature death. Your love for your daughter and your tremendous courage and deserved pride in your child really stand out and you were both lucky to have one another. I struggle to find the words but thinking of you and wishing you strength and courage to carry on as Lisa would have wanted you too I’m sure. It is amazing that there was no damage to any of her major organs.
Thankyou for sharing so much with us all.

Take care,
Love Anne x

Dear Sue

Thank you for sharing the post mortem findings. I hope that there may yet be research that can be done using some of those findings which will help others in the future.

This is an awful disease and there is still so much unknown about how cancer spreads…understanding metasatic spread will I believe be the key to finding a cure…and still so relatively little research in this area.

very best wishes to you

Jane

Sue,
Thank you for that. It must have been so difficult for you. Cancer therapies are moving so fast and treatment that effectively crosses the blood brain barrier are an area of focus (eg Lapatanib).Lisa’s pm emphasises this and as you say could be seen as a hopeful example.Thank you for sharing it.

When I was younger I could not understand why my Nan took the death of my Mum (from this horrible disease ) so much more badly than me and my brother and Dad. Obviously we were devastated, but her hurt went so much deeper and was all consuming. Now, having a daughter of my own I understand.To watch someone suffer from this unfair indiscriminatory disease is tortuous. To see your own daughter must be horrific. It is a daily struggle to cope myself ,but it would be far worse if it were her.I am not sure that I could bear it.

You have been more than any daughter could wish for, and I am sure that Lisa knew that. Your love and concern shone out like a beacon. Thanks again… Julie xxx

Dear Sue,

Thank you for sharing this with is all. Like Lisa, I believe after we are gone the body is better used by people for a greater good, and I hope that something will be gained from the death of your lovely Lisa.

Love as ever, Rebecca

Yes Julie there is something really different when you watch a child die. I can’t imagine ever getting over it … like your mother. It must have been awful for you too though growing up without a Mum and why you must worry about your daughter.
It was truly awful losing my dad … watching my Mum die and then losing a brother to a sudden heart attack but nothing on this earth compares to losing not just a child but losing someone who you would choose as your best friend even if she hadn’t been a daughter. Someone who Lisa worked with said to me that Lisa was that sort of person that was good friend to anyone who wanted her to be. I was really proud of her and always had been. When she fell unconscious I sat holding her hand and talking to her and I told her how proud I always had been of her … as a child and as an adult too…and how much I really liked her not just loved her which went without saying. I just hope she could hear me. She was one of those human beings that always thought of others before herself. So many people have come up to me that I don’t even know and have cried openly because they had been talking to her just a couple of weeks before she died and she had made light of her pain. Gloria Hunniford says in her book that nothing compares to losing a child … it goes beyond description. Like someone has ripped out your whole insides. If I could change things and have it that I died instead then I would … honestly I would. I know that Lisa would be bad if I had died but somewhere inside you know its the right way round. When I was ill a couple of years ago and was rushed into hospital she was beside herself with worry and was so good at organising everything. . I just have to hope that when its my turn I go quickly.
By the way Lapatinab was not available to Lisa … not HER+ which I believe you have to be … we asked back when first dx with brain tumour. I am hoping that they will find out why it was spreading so quickly within the brain to be able to help others and to be able to prevent it.
Please everyone insist on a brain scan when they do the body scans. And I just hope they do find several chemos that cross that barrier into the brain. It seems to be getting more and more frequent with younger women.
Thank you all for your kind words.
I see that Kate isn’t at all well at the moment. I have everything crossed that she pulls through again.
Love Sue x

Thanks Sue for sharing the details of Lisa’s pm and hope it helps with research in the future. After having just gone through bc myself, my dad died very suddenly last thursday and he had a pm and he had had an aortic aneuryism. A new screening programme is about to be set up to screen men of my dad’s age as common in men 65-75 so may be his pm will help understand this condition too. Kate texted me the other day and I have visited her on several occasions and now she is very unwell. I hope she regains her strength soon. It is too sad for words at the moment. I will certainly by asking for brain scans when I need a scan thanks to you, Sue.

All the best
Rachael

Dear Sue,Thank you for sharing that,I cant begin to imagine your pain.My daughter is 34 now and I am so glad it is me not her who has bc.It is true that when you have children you would die for them if you had to and would do anything to keep them safe.I think Lisa was as blessed in her Mother as you were in your daughter.Love from Valxx

Oh Sue, like Horace can’t even imagine your pain. I followed Lisa’s story like many and somehow it helped me to come to terms with my dx as I tried to imagine what it must have felt like for you. The thoughts of losing one of my daughters to bc is something that I can’t even bear to think about. Much rather me than one of them I think of Lisa often and although I never saw her I now have a picture of her in my mind through your lovely description of her Take care. Eileen xx