Coping with Caring

Signing Off I guess

2010-09-29T22:56:55Z

My beloved husband died on 15 August 2010. He fought like a tiger and we were so proud of him. The day before he died we got married. We had a lovely day, he found it quite tiring but I know he had a lovely day and enjoyed seeing our friends and family all together. The next morning he started to deteriorate very quickly. We were warned that this could happen but thought it meant over a few days, not 12 hours.

I don't want to dwell on the negatives. I do want to thank Macmillans on behalf of myself and my family for the wonderful support that they gave us. The financial advice was crucial and it made an immense difference. The clinical help was delivered speedily - it was so reassuring to know that following a phone call from me, worried about the lack of pain relief been given, that within 20 minutes the specialist nurse was sent to see my partner to see what he needed. I'd been nagging for a few days and got nowhere but Macmillans knew who to contact. The drug information helped keep me and my partner sane when he got side effects that the nurses seemed puzzled by. Lastly, the kind support that many Macmillan blog readers and users gave was really appreciated.

I think Macmillans is the gold standard against which other charities should be measured, it is a terrific organisation and I can't praise it enough. Thank you all from the bottom of my heart!

It hasn't worked

2010-08-06T22:25:29Z

We were told the bad news that the chemo hadn't worked again, although we are getting a second opinion hopefully, to be honest I am not hopeful. The prof is a good doctor, he has tried everything.

My partner is now a wheelchair user. He is going to come home for as long as possible, if he gets an infection that will be the end. If we are lucky he has weeks.

Don't think I'll be blogging for a while, gonna be busy for a while (long while I hope).

Love and good luck to anyone reading this.

Chrissie

Wish the nurses would read Macmillans drug guides!

2010-07-27T22:10:32Z

My partner was treated last week with clofarabine and cytarabine and poor guy seemed to have every side effect going. Unfortunately, the staff aren't familiar with the side effects of these drugs. My partner thought he was a goner, he got Acute Inflammatory Response (soaring temperature, sweats) from one and the flu like symptoms of the other. After five days he got hand-foot syndrome. Thanks to the MacMillan treatment information I could see that he was having side effects but the staff kept talking about him having an infection. He has had dreadful nausea and couldn't keep anything down, at last he is going to be fed by TPN (nutrients into blood system via a drip). I am very relieved about the TPN as I asked about it over a week ago as I was extremely worried about him not eating.

If the staff were aware of the side effects I think he might have been less anxious and I wouldn't have felt like I was talking to a brick wall...

His hands and feet are looking a lot less swollen, but he still can't walk and we have to wheel him about at the moment.

When I got to the ward tonight, I looked through the door to his room and he wasn't there, another patient was sat on the bed, nearly had a heart attack, thought he'd been sent to HDU without them telling me. It turned out the ward is being deep cleaned due to a superbug. He'd been put in the room next door.

Asked him how the consultant's ward round had been and he said he hadn't been listening. Going to take a voice recorder in so that we have an idea of what is going on. I think my partner was probably very drowsy with the drugs and fatigue, but have no idea really where things are up to.

So I'll just have to keep hoping and praying that he's going to be OK.

Time together

2010-07-21T21:44:12Z

Today, after the anxiety about my partner's mood last night, I was quite drained, I had difficulty getting to sleep, just lay there praying for a miracle. He asked me to bring our sons to see him, in case he gets worse. I arranged for us to meet him in the Day Clinic after hours and it was strange to see it so empty when it is usually packed out. To be honest, I find it difficult to go with my partner when he had day clinic appointments. The hardest part is walking in and seeing so many patients, the numbers are overwhelming. I don't know if other carers feel like this, I think it's because it reminds me of my Dad who also had ALL and died when I was 8. Now I find myself taking my 8 year old to see his Dad with ALL.

On the way in, we bumped into the Consultant. He said 'he is struggling, it is a horrible disease'. I was pleasantly surprised to see my partner looking a bit more energetic than he has. He has been very lethargic, because of the chemo and the illness. He was good company and more his old self. We don't know if the chemo will help at all, the uncertainty is horrible. We try to make plans, we'd like to get married but will we have time?

My partner seemed more laid back about the side effects, in that he wasn't seeing it as signs of being on the way out. Really glad about that. My oldest son was shocked by his Dad's muscle wasteage, I explained that it was to do with his Dad being very fatigued and not having any appetite. I think he is now registering how ill his Dad is. He had a good chat about football (Bury beat Leeds Utd 4 - 0, his Dad supports Leeds) and work. I hope that my partner has a restful night, or as restful as it gets with obs and numerous drips etc. I think he'll feel really tired after having so many visitors.

Halfway through chemo

2010-07-20T21:54:24Z

Partner is very poorly. He may be transferred to HDU. He is very frightened that the side effects are a sign that he is going to die. He is extremely tired, may have an infection (or it could be 'acute inflammatory response'), is unable to eat. It is awful to see him like this, I am scared too.

I phoned his nurse and she was reassuring but has suggested that I get our sons in to see him. I feel very anxious but I am trying to organise it, it may help his morale a bit.

I am trying to stay calm but am finding the pressure of doing so very hard as I am scared for him.

Chemo has started!

2010-07-17T22:29:05Z

After the anxiety of this morning with my partner having a fever again, I am relieved to say that he has started the new chemo: Clofarabine (I think), usually for children with refractory (e.g. relapsed) leukaemia that has become drug resistant. He is also changing pain relief but said he can't tell any difference at the moment, except that the newer one tastes vile!

While I accept that it may not work, I am just glad he was well enough to start it. His mum and younger sister are visiting him tomorrow and I've bought him some posh writing paper and envelopes for his last letters. This is a very depressing aspect of the stage we have got to, however at the same time I'm getting a copy of his Decree Absolute as we are going to try to get married after 17 years, health permitting... Que Sera Sera!

Finding that obtaining Mortgage Interest Relief is a major chore. You fill forms out in great detail and then they ask for the detail again. Today I've been asked to provide details on a loan that was taken out 15 years ago and paid off. Hopefully I've still got the paid off in full letter somewhere, businesses don't have to keep records for as long as that! It is a major stress for me at the moment.

On Monday, I start a new job (sort of) as I'm working on a Casual Relief Basis, the new employer has been brilliant but it wasn't good to be asked to start on the first day of the summer hols, 2 days before the end of term, childcare was pretty much booked up by then. Am hoping (crossing everything) that my partner will be OK so I can just get my foot in the door as it were.

2 steps forward 3 steps back

2010-07-17T10:32:11Z

Hi there

Well, the bad news was that the ALL was back with a vengeance. To cut to the chase, my partner's consultant is going to put him on Clofarabine. 20% chance of it working (max). My partner has had an infection for a couple of days which always seems to come on during the night. He needs to be fever free or they won't start him on the chemo. We all just have to wait today to see if he can start. He is really scared he won't be able to and that they'll give up on the idea of it in which case the outlook will be really bad.

Please cross everything!

cheers

worn

Scary Week!

2010-07-15T17:52:27Z

On Tuesday night, my partner had an allergic reaction to the platelet transfusion. His temperature skyrocketed and his oxygen levels plummetted, it was very frightening for him. The staff were terrific and managed to stabilise him. He has been put on morphine and arfron (?) since then as the bone pain has got worse. Felt very scared about this, the docs kept saying it could just be a side effect of the GCFS but today we found out that the Leukaemia is back with a vengeance. I kept hoping that our Consultant might have a last card to play but it is a sort of Armageddon option. Today we found out that if he didn't continue with some sort of treatment, he would have a week to live. There is one last chemotherapy to try which will last 6 days. It is a very strong treatment normally used for ALL in children. We have always said that he got ALL, more common tragically in children, because he is a big kid. His consultant has had to pull a lot of strings to get this approved and we are both grateful from the bottom of our hearts that he has made this happen.

I just want to say that my partner is such a fighter, such a brave guy, please be thinking of him over the next 6 days, if only he could get into remission we could go for a stemcell transplant. Our donor is desperate to help. I daren't imagine right now what this strong treatment will entail, he's just come through high intensity chemo and it took about 3 weeks for his counts to start to rise a bit, despite all the GCSF.

I think my blog must be one of the most depressing reads ever, don't blame people for not wanting to read it but in a weird way, it is helpful to get this out of my system.

Stressbusters for Carers

2010-07-10T12:10:19Z

http://www.beliefnet.com/Health/Emotional-Health/Depression/12-Depression-Busters-for-Caregivers.aspx?nlsource=10&source=NEWSLETTER&utm_campaign=Inspiration&utm_medium=newsletter&utm_source=NL

Hope this link works, there are some good ideas in this presentation. I like the idea of fixing a break at a specific time, perhaps just for half an hour everyday. i think that could work. There is a good section about 'guilt' which resonated with me. I feel guilty about enjoying myself. I don't exactly whoop it up! I get flack from my mother in law for my lack of energy at times. Unfortunately stress at the moment makes me very tired. I don't know if anyone else is experiencing this, at times doing anything feels like running through knee high mud.

Have a nice weekend everyone

worn

A Good Day

2010-07-08T09:43:32Z

Watching the local news on Monday night, spotted my partner's consultant on TV, scurrying away from an Inquest. Amused to seeing him smoothing his hair down on camera, never suspected he was image conscious! He is an incredibly clever man but at times my partner says he feels as if the Prof is talking to a batch of cells rather than to a person.

My partner had an afternoon and evening at home, he put up a shelf and then watched the World Cup in the evening. It's good to see him having some energy, he is a workaholic by nature, the chemo induced fatigue he gets is particularly difficult to cope with, as is 'waiting' in general.

We are in limbo as we need to wait for his body to recover from the Hyper CVAD regime, this can take weeks whereas with his inital treatments his body repaired itself quite speedily. We are hoping he will be in remission long enough for a stemcell transplant to take place. We are crossing everything! I find the uncertainty very stressful at times. It's little things such as will my partner be able to drive my youngest to an event with Cubs next week? We just don't know until the last moment what is going to be happening with treatment.

I had a nice break yesterday morning, a friend who is a follower of Ba'hai, has been running a study group on Spirituality. I attend to give a perspective from a different faith background. It is comforting to know that lots of people are praying for my partner, it makes me feel less isolated. One of the group attending has just found out that her father in law has a tumour in his chest so we talked about chemo and good sources of information e.g. this wonderful website and practical issues such as children visiting - may not be allowed etc. I came away in a really relaxed mood, looking forward to the next time.

I'll stop now, but I wish anybody who chances upon my blog some peace and happiness in their day, have a good one!

kind regards

wornoutcarer

Waiting for the man...

2010-07-06T12:32:44Z

Today is ward round day so my partner should be seeing his consultant to find out whether he is going to start the Stem Cell Transplant process. Very fortunately, my partner's sister is a perfect match however she will need to take drugs to get her ready to donate so we are all on tenterhooks. Crucially it depends on whether he is now in remission (crossing everything, hope so!).

Off to watch my son in his Sports Day, he's quite nervous as there are house points involved and he's worried about getting any or not. Previously they got a sticker for taking part. I tell him that he only has to do his best and I'll be proud of him. Wish my partner could go but he has to avoid crowds and it would depend on when the consultant turns up.

When my partner is in hospital, the one benefit if I can put it like that is that I have time to do some crafts, I've made a top out of two extra large men's shirts from Oxfam and I am chuffed with it, I haven't really done any dressmaking for about twenty years :)

Wishing you all a good day today

love

Wornoutcarer