We Talk Brain Tumours

Hi Aquarius. So sorry you had to join our group but glad you found  us.

I am not posting so much these days but I saw your post and it is so similar to my own journey that I wanted to touch hands with you.

My husband Mark was diagnosed at this time last year with inoperable GBM4 right side. Fit healthy 55 year old. In our case the Biopsy caused the beginning of the paralysis on the left side but I think this would have been the progression of the tumour soon after anyway. Mark was initially offered 6 weeks RT but scan showed that the tumour was progressing so fast that he was given 6 sessions RT over two weeks . No chemo was offered. We hoped that the RT would shrink tumour and give some quality of life.......even for a short time, but in our case it just held the tumour at bay and gave us 3 months before it began to grow again. In those 3 months we did everything that was physically possible in a wheelchair( we drove all over, went away for weekends and even got to Italy 8 weeks before Mark died and most importantly, said all the things that needed to be said). My advice ( and others may disagree) is do everything possible just now...you may have much longer than us but dont wait thinking that you can do it after the effects of the RT wear off. We assumed that the tiredness was the  after effects RT but ..that never went away and just progressively got worse.

For yourself ...you must accept all the help on offer. You will be strong just now and think you can do it all yourself, but get help in place now. With two young children( mine are teenagers) life will be difficult enough. From experience when a certain type of help eventually is put in place, this hateful disease demands more.

Sorry if I sound negative. The one thing you have to remember is that no one person reacts the same way to this disease( how I hated being told that by doctors)...everyone reacts differently.

I wish you love and strength. Keep posting. You will find the Forum a lifeline at any time of day and night. Please PM me if you wish.

Thinking of everyone today.

Love Cathi x

Hi Aquarius.  Very sorry that you've had to go through this, but you've found the right place for support and advice.

It can be difficult to tell you exactly what to expect in the near future as each brain tumour is different (based on type, size, and location).  The radiotherapy will (as you probably know) have the effect of making the healthy tissue around the tumour swell up and give the impression that the symptoms are getting worse.

He'll be monitored during the treatments, but don't be surprised if the oncologist feels that the full six weeks might not be appropriate.

Try to do what you can to support your partner though this and calmly address each day as it comes (all of us live on a day-to-day basis here).

You've been told that you have a 12 month prognosis, but at this stage, that's a loose timescale as there's no telling how quickly the tumour will grow after the radiotherapy.

It might be an idea for you to have a private talk with the oncologist team and see what their feelings are and to answer your questions without your partner there.  You might be able to talk about subjects that you'd need to skirt around if your partner was there.

You certainly don't need to go through this alone, you'll have a huge amount of support offered to you, and don't be afraid or too proud to accept it.

Morning Pete.

How is your first weekend going? I hope you are going out with friends and getting out into the fresh air?

On the subject of help from all the different groups after your loved ones have gone.....I can only say that I have had no contact with anyone. It is almost as though you are now crossed off the list. Personally I did not really want anything...but there are some who do and it is quite sad that letters asking for  a Donation is the extent of the aftercare. The one thing I do still get is a once a week Reflexology session at home..and that is from a Private Cancer Charity who insist that I will still get it for as long as a year after bereavement.

I admire you for going through Ali's clothes. I still have everything hanging in wardrobes. This is helped by the fact that my teenage son likes to wear a lot of it..but I dont know when I will be able to part with everything. I still bury my head in Marks suits at sad times. My wedding ring is not coming off and I gave my son Mark's and my daughter got the other which was Mark's Mum's. I think Joanna's idea of blending them both together is lovely .

Martyn ..you have gone very quiet since you went on the wee pills.... !!

Julie..Hope things are better?

Love to all

Cathi x

Hi there Cathi.  Good to see you again.

I've had a few busy days, but now having a bit of a quiet weekend.  But the nights are getting increasingly quiet.  There's something very sad and lonely about the routine of shutting the house down and going to bed.  But at least I'm able to sleep without medication.

Heh.  I'm not sure I'll take up the chance of reflexology, I don't think anyone would want to touch my feet.  I had a back massage once, but it really didn't help at all.

It's nice that your son is wearing his father's clothes, making use of them and still feeling connected.  I can't really see myself wearing Ali's clothes though.  I can't even take the fleece tops she stole off me as she moulded lady-bumps into the fronts of all of them....

Aquarius

I too am sorry you have had to join us but you will find support here.  We will be honest and sometimes thats not easy to take.

When my husband was diagnosed we were told his tumour was inoperable, incurable and he had 3-6 months.  At the time he was still walking up to 14 miles a day with his beloved hounds.  He did get operated on, he did get RT (radiotherapy) and chemo, he lived for 18 months.  Like cathi we used the time to say everything to each other that sometimes you put off saying, he developed a "bucket list" and we ticked off each one of them - except the impossible ones like to become grandparents or to see our son graduate before he died, We asked for a wheelchair whilst he could still walk ready for the just in case, it takes time to put things in place so be prepared make sure you get the support now.  Get a macmillan nurse if you don't already have one, ask about the blue badge scheme - its so useful and start to claim DLA immediately - your mac nurse can help you.

Sometimes your husband may get angry and try to push you and the children away in a strange way to try to make it easier for him to leave you in the future.  I found this and we talked about it, we talked about how I would cope when he had gone.  For now though, you are at the beginning of your journey, try to stay positive, if you need to scream one of us will be hear to listen, drink virtual wine with you or eat chocolate.  Ask as many questions to your oncology team as you like, write them down before you go - they are used to it and get as much information as you can deal with.

joanna xx

Pete I'm so pleased Ali's special day was all she could have wished for. The sun shone brilliantly here all day and my thoughts were never far from your or your families. Ali's sister's comments on Ali's death announcement brought me to tears, I forget that she is also someone's sister, someone's daughter. I can't begin to imagine how her parents are coping either.

Your comment about returning to "our bed" touched me. I love that you still think of it that way.

Where we live, the Mac Nurses are attached to the Hospice. The Hospice rang mum every week for eight weeks and also extended the offer of counselling to my sister and I as well as to mum. She has now been invited to a once monthly bereavement support group. She went on Friday and said it was lovely to be with people who knew how she was feeling and she didn't have to explain anything. I don't feel I need counselling. I'm very sad and I miss dad desperately but I'm grieving so don't expect anything differently. I'm sleeping and eating normally, laughing lots as well as crying and don't consider myself to be depressed.

Lots of love to you Pete.

Naomi.x

Welcome to all of the new passengers on our train. When I have more time I will read your stories properly.

I don't feel able to offer much support at the moment, much to my shame. What I will say is that I couldn't have got through dad's illness or his death without the friends I have made on here. When nobody else understood or was bored of listening, there was always someone here to lend an ear or some very useful advice. We would have remained clueless about benefits that dad was entitled to or the end-of-life support he and mum were able to ask for and then received, without the benefit of the wisdom of the people here.

I will be back in touch shortly, keep going to everyone - whichever stage of the journey they are at.

Naomi.x

Very true, Naomi.  The amount of emotional support I've had here in our little section of WTBT has been amazing.  I know that I would have been a lot less "together" without people like this little band of fellow travellers.

It's so very important not to feel alone in all of this, and the experiences of others generates so much confidence.

Hi Aquarius

Well, I've only just been able to get back on the site and everybody else has already said everything I would have said. It's true, everybody's journey is different and the different stages can vary so much for everyone that it wouldn't really give you any ideas about how things will develop for you and your husband. But I do understand the interest in other people's stories, I'm almost obsessive about it. So I'll tell you how it developed for us because, if you're like me, you'll want to know everything about everyone else who is going through this.

Tony is 50. In April we went kayaking and he found it difficult to sit up straight in the kayak and was leaning to the left. Over the course of the next few days he began to develop a limp which eventually increased in severity and soon after his left arm also became weak. On 30th April he was told that there was something wrong in his brain and he was admitted into hospital.

He was diagnosed in mid-May with a GBM Level IV and was told it was inoperable. It was explained to him that it was sitting on the right hand side of the motor part of the brain which controlled the left side of the body - hence the symptoms. I spoke separately to the neuro-oncologist who told me that he expected Tony to have between 6 and 12 months. Tony didn't ask, he didn't want to know at that time. It was really awful knowing when he didn't. A very stressful time. The tumour was on the right side of the brain but looked on the MRI to be spreading to the left side of the brain too.

He began a cycle of radiotherapy in early June (30 fractions) and was given in conjunction with temozolomide (oral chemotherapy). I was told from the outset that there would be no cure and that the treatment is being given to help improve the quality of the life he has left, not to prolong it or cure the cancer. He has been extremely lucky in that the radiotherapy made him tired but not to the extent that he was dysfunctional and the chemotherapy has not caused any side effects at all. As I say, he's lucky in that. His arm and leg became a little stronger after the RT but not to the extent that it made any difference to the quality of his life. He was and will be wheelchair bound. He can walk a few steps with a frame but he will never be able to walk properly again to any significant extent.

He is now on temozolomide which he takes in 5 day cycles about once a month but they have said that there will  be no more radiotherapy.

He had a further MRI scan in early November which strongly indicated that the tumour was getting bigger although the consultant did explain that this could be caused by the radiotherapy. He was not showing any outward signs of further deterioration. He has now received a further cycle of chemo and will have another MRI tomorrow which will show whether the swelling is due to the RT or because the tumour is actually growing. We get the results on Wednesday.

In terms of his health? Well, I am so confused right now. I don't know if it's my paranoia or things are actually getting worse but I always thought that any outward signs of the tumour growing would be physical. Perhaps his eyesight would go, or his speech or maybe the other side of his body would begin to lose function - I have read all of these things are possible. But the things that are happening to him are more related to his personality. He seems to have lost all concept of what is really going on. He has decided that he owes it to the world to give everyone his opinion on everything (regardless of whether they want to hear it or not). So far he's upset practically everyone! His logical thinking has all but gone and so much of what he says, whilst seeming logical on the surface really doesn't make any sense at all. The simplest of things now seem to confound and confuse him. He can cope with one thought at a time but if he had to link two separate pieces of information then it would be beyond him. He is also become mildly obsessive about things and has decided to buy a speedboat!! He talks about it constantly, googles information, has his brother scouting websites for boats and has insisted I buy every magazine possible. He spends so much of his day tap tap tapping away on his Blackberry obsessing about some thing or another all the time. It's such a shame for him and us that he cuts us all off in this way. He has no idea that he's even doing it. It all makes sense in his own head.

A new carer arrived last week (we have a carer every morning to shower him and get him dressed) and the new carer Gladys has had a massive impact on him. He has decided that she is a clear indication that God actually exists. He now sings gospel songs every morning while she showers him - which is actually really lovely to hear. And now he wants to offer her a full time job as his carer because he wants to spend more time with her. It would be funny if it wasn't so desperately sad for us to see how he has changed. The children are finding it so hard to watch their Dad disappear and he never misses an opportunity to pour forth his wisdom on how they can improve their lives. 

On top of this he also seems to be developing problems with his toilet habits. I wouldn't describe it as incontinence but he seems to have lost the ability to know when he should go and almost every morning there is a frantic call from him to say that he's desperate for the loo. Sometimes he gets there on time but, to be honest, he doesn't get there more times than he does. He doesn't seem able to anticipate when he should go anymore. Poor thing.

Anyway, i was supposed to be helping you Aquarius but seem to have wandered off into my own challenges right now. Oh well. If anyone has any insight for me as well as Aquarius I would be really grateful. Does anyone else have experiences like this? Has anyone had explanations from the doctors. It would be good to know if this personality change is the tumour, the medication or the emotional impact of having a terminal illness. Just really to find out whether I should be worrying or not.

I am the kind of person who likes to know everything in advance and I find this horrible disease so difficult in its unpredictability. So I am constantly looking for signs of deterioration, sometimes to the point where it may come across as wishful thinking!!  Which of course couldn't be further from the truth.

Much love to all on here. Wishing everyone a peaceful, stress free and pain free night.

Pam

x

Hi there Pam.,

Sorry, but I had to chuckle a bit at the gospel singing you're describing.

I imagine that the personality issues might well be a product of tumour metastasis.  It also might be a result of the swelling from the radiotherapy.

It's really difficult to try and predict what's in your near future as it's pretty unpredictable.  Everything happening so painfully slowly really doesn't help things - there's some things that I missed because the changes were so subtle.

Ali also had toileting issues as well, the time between knowing she wanted to go and the actual going gradually got closer and closer until she reached a point where she wasn't aware that she was going.  We just dealt with whatever we had to on the day, often with the help of some pretty crude toilet humour.  Humour helped both of is deal with the indignities of destroying disease.